Pain Is A Four Letter Word

FIBROMYALGIA - NEW ARTICLE

2012-02-02T07:57:00.005-05:00

There was a new article published recently on Fibro.

The Clinical Concept of Fibromyalgia as a Changing Paradigm in the Past 20 Years

It is a very good article and if you have fibro, which millions of us do, definitely check it out. 2-4% of the population in fact have fibromyalgia!

Quite a large number huh?

This is a huge sweeping article that encompasses all aspects of the disease, from beginning to end, so even if you don't have it you might find it an interesting read.

I found it interesting in that it said that only 5-7% of patients are male.

Figures. Not only do I get a rare disease like CRPs but then I am in that strange percentage of patients that also develop Fibromyalgia and in that even smaller percentage of fibro patients that is male. Not to mention that most CRPS patients are also female. AND my CRPs is full body, or systemic and only 7-10% of CRPS patients end up with systemic CRPS. Then add in the number of those patients who go on to develop CFIDS (chronic immune deficiency syndrome ) I am not a math genius but I would say those odds are pretty high. Maybe I should play the lottery more.

I am not complaining. Life is what it is, you play the hand you are dealt. But it would be nice not to be so tired, exhausted, and just worn out all the time. And oh yeah, not be in pain. That too.

But the patients I talk to, the fibromyalgia patients that is, the overriding symptom they complain the most about is the fatigue, more so than the pain.

Similarly with CFIDS; as they say on the CFIDS Association of America website; the overriding symptom is incapacitating fatigue; (experienced as profound exhaustion and extremely poor stamina). There are other symptoms of course; short-term memory problems, difficulty concentrating, flu-like symptoms, etc.

Another interesting section of the article is where they discuss who should be doing the diagnosing now. They make the case that there is enough information available that there is no longer the need to refer the fibro patient out to specialists, that the PCP (Primary Care Physician) has enough information at hand that in his office setting he should be able to determine whether or not you have fibromyalgia; provided you do not have a multitude of other medical conditions which could possibly overlap. That a diagnosis of fibro should be made based on inclusion not a diagnosis of exclusion. This is a big point and well made in the article.

They also point out the importance of movement, activity, to the fibro patient. Do something, anything, to keep your body active. Walk, bike, swim, volunteer, something. The worst thing you can do with this disease is nothing. Your muscles will atrophy very quickly and the fatigue and muscle pain will worsen exponentially.

So check out the article, let me know what you think!

peace, Keith

American RSDHope

www.RSDHope.org

CRPS and Cold Weather

2012-02-01T04:59:00.006-05:00

This time of year many CRPS patients feel increased pain as well as other symptoms and may never have realized that there is a true connection between their CRPS and the temperature. But temperature changes, even barometric changes, can severely affect your CRPS.

CRPS Symptoms

Many patients report being able to tell when there is a storm coming, even small changes in weather patterns, by the subtle changes in their pain. For those patients who live in areas of the country that experience tremendous storms the pain can reach epic states, hopefully for only short time periods. Orlando is one area I know of that has some doozy thunderstorms having gone through quite a few. I have not been through any tornado's but have experienced a few hurricanes and they weren't much fun, neither were blizzards. I am sure you all have had your share of similar experiences.

For most, not all, living in the colder climates is simply too painful for CRPS patients. The extended below freezing temperatures cause too much pain throughout the winter months. This can all be traced back to the discussion of the damage that the application of ice has on the CRPS-affected area of the body we have on our website in the Physical Therapy section.

ICE and CRPS

The principal is the same, whether it is ice or cold, the damage to the myelin sheath protecting the nerve is the same, just slower. In addition what happens is all the forward progress the patient has made during the warmer months, regarding physical therapy/activity, is lost during those winter months many times, even if you are somehow able to continue with some form of therapy in the cold months (warm water exercise in a pool, walking in a gym, etc.), because of the damage done simply being outdoors in the normal course of living; going to and from the car going to the store, Dr., gym, etc.

And I think anyone who has lived in the colder climates will attest to the fact that no matter how much heat you have on, 70 degrees in the house during winter, never feels as warm in your body in the wintertime as 70 degrees on a sunny day during the summer or spring or fall months.

In the end, many CRPS patients move further south. But too much heat, becomes too much as well, and states like Florida and Texas are too difficult to bear.

These were lessons I learned the hard way. But like many of you, for much of the time I had no choice at the time or lived where I lived for family. Eventually I became what they call a "half-back".

What's a half-back? Oh, I am so glad you asked, unsolicited man in the back row. And a very good question indeed during Superbowl week! Go Pats!

A half-back is someone who starts off living up north, moves down south, then gets halfway back and stops. Half-back. We stopped in NC. Its' climate is a mix of mostly great weather 10 months a year, and very little colder weather. We basically looked at the map to see where in the country we could find the best weather, temperature-wise; not too hot, not cold, extended summer, shortest winter possible, etc. Of course there were a lot of other factors involved that people normally use when choosing a place to live; housing, jobs, cost of living, crime rate, and a biggie, medical care.

So don't be surprised this winter if the cold weather has been making your pain worse, your allodynia heightened, your sensitivity worse, or any of your other symptoms MORE! Find ways to lessen their impact if you can and hang on until spring. If it is possible to move, think about it. If it is not, start figuring out ways to lessen the impact of the winter on your CRPS; warm water exercise, more PT indoors, different clothing, discuss with your Dr., etc.

There are also some CRPS patients for whom the warm weather is best, they actually prefer the heat, real heat. For them, they should consider those hot states, Texas, AZ, New Mexico, FL and others. Where you live can have a huge impact on your pain.

The bottom line is we need to remember as chronic pain patients that we need to always be thinking long-term and that treating our disease does not mean only with medications and medical treatments but also lifestyle. Small changes can reap big rewards.

Peace, Keith

American RSDHope

Being happy doesn't mean that everything is perfect, it means that you've decided to look beyond the imperfections.

Loss of Karen (Orsini) Toner)

2012-01-25T07:51:00.005-05:00

We at American RSDHope, and my family especially, mourn the loss of a wonderful woman, person, mother, wife, daughter, and friend; Karen Orsini Toner.

Karen passed away on Sunday, January 22nd, 2012; due to complications from a long, hard battle with MS. Her fight took a sharp downward turn this past fall that her body simply could not recover from. She was only 55. There were other medical issues at play that the Drs were just not able to decipher.

You can read more about Karen by stopping by our website

She worked for many years now on the Board of Directors of American RSDHope and was a vital link in a very small chain. She helped fill a mighty big void when we lost my dad seven years ago, now we have lost Karen as well.

So many of you have talked and/or emailed Karen over the years; although you may not have known it. If you have written to us at RSDHope, chances are you wrote to her. She answered most of the emails that went to the office. That is a lot of mail believe me. She and mom, Lynne, handled all the dealings with the supports groups around the country; the Mentor program; all of the products that went through the awareness catalog; and a slew of other things.

She and Lynne got together every day to work, down in the RSDHope office, side by side, working on their files and computers. Karen scooting to work on her walker, then eventually on her scooter (they lived next door to one another). They had to move part of the operation over to Karen's nearer the end as it became more difficult for Karen to get over to Mom's and so mom would just pop over there and they would work there. But she kept on going right until she could no longer use her hands to type. She was amazing.

She was upset that she was leaving so much work for myself and mom to do, with the group, more than upset at her loss of being able to do it herself sometimes I think. She had so much courage, my sister. She was a strong person, got that from my parents, both amazing and strong people. Our family has been hit with some pretty tough things over the years. I know, everyones has. You just wonder sometimes, when does it get a little easier? When does the downhill leg come? When can we coast for a little bit or is it always going to be struggle?

I guess it finally is coasting time for Karen. She is in no pain, her body is whole, she is happy, free, and laughing with my dad in Heaven. She said she talked to him the night before she passed. I have no doubt of that. He was waiting for her, to guide her. She was at peace knowing that.

Death is always hardest on those left behind. We grieve not for the dead, but for ourselves, because those we love have been taken from us. We have their memories if we are lucky and if we were smart enough to make some great ones before they left. Be sure to make some great memories with the ones you love because you never know how much time you have left.

I have some wonderful memories of Karen, many, many memories. I am lucky. One day I will see her again I know.

Until then, our fight goes on. And we continue to make memories with those amazing people still in our life. Life can be short, don't waste it on anger and hate. Let go of the past and move forward.

peace,

Keith

We have one life; it soon will be past; what we do for God is all that will last.

Muhammad Ali

New articles

2012-01-22T07:23:00.002-05:00

We have posted a couple of new articles on the site, in the FDA section as well as in the Fibromyalgia and coping section (coping with pain and sleep), in case you haven't been there in January (2012).

We are trying to rotate the articles to keep them fresh on the new site. We won't keep as many as we had on the old site, it was just so much overload so as we add new ones, we will take the last one off in each category.

I did want to put in another plug for an article that we have on the site that I seem to refer a lot of patients to lately; Addiction, Dependence, and Tolerance - What is the Difference?

It seems there are still some Drs. who are confused about the differences between the three, probably because many medical boards are putting incredible pressure on them regarding the dosing of opiods, due to the illegal sale and use of them. It is a good article and may help some of you, especially with family and friends who ask about it. It is a very touchy subject lately.

Send in any questions you have to keeths@mac.com

peace, Keith

American RSDHope

Let's end ignorance of CRPS!

BEGINNERS GUIDE TO CRPS

2012-01-14T08:35:00.002-05:00

We have updated one of our more popular articles, "Beginners Guide To CRPS" on our website.

There is a little more information, more detailed, and probably better explained than the original version. It is a straightforward one page article that walks you through the website; explaining to first-timers, to both the disease and the website, what the disease is all about, the high points to hit for a better understanding of the disease, items of particular importance, and sections they definitely need to read in order to come to a better grip with the disease.

Some of the sections may be a little scary to the newly diagnosed but most find knowledge is key in this disease, seeing their symptoms come alive in front of them, knowing they aren't crazy, they aren't alone, and all the things they have been dealing with have a commonality.

Check it out and let us know what you think!

peace, Keith

American RSDHope

FDA ALERT FOR THE OXY FAMILY - JANUARY 2012

2012-01-14T08:31:00.002-05:00

There is an important recall notice out regarding the Oxy family of medications, sent out by the FDA;

PUBLIC HEALTH ADVISORY

It involves the following medications;

Endo Pharmaceuticals Opiate Products by Novartis Consumer Health: Public Health Advisory - Potential Safety RiskIncluding the following products:

Opana ER (oxymorphone hydrochloride) Extended-Release Tablets CII
Opana (oxymorphone hydrochloride) CII
Oxymorphone hydrochloride Tablets CII
PERCOCET (oxycodone hydrochloride and acetaminophen USP) Tablets CII
PERCODAN (oxycodone hydrochloride and aspirin, USP) Tablets CII
ENDOCET (oxycodone hydrochloride and acetaminophen USP) Tablets CII
ENDODAN (oxycodone hydrochloride and aspirin, USP) Tablets CII
MORPHINE SULFATE Extended-Release Tablets CII
ZYDONE (hydrocodone bitartrate/acetaminophen tablets, USP) CIII

For more details please click on the link above.

Peace, Keith

American RSDHope

CRPS and surgery

2012-01-14T08:28:00.002-05:00

There is a new article regarding CRPS and surgery on our website;

CRPS and Surgery

in case you ever have that question tossed at you, for yourself or a loved one. It is a question we have been getting asked a lot lately so we thought we should post something about it!

Keith

Books on Pain

2011-12-03T11:38:00.002-05:00

People are always asking me if there are any good books to check out. There are a couple of books I would recommend.

One of them is called "Living Beyond Your Pain" by Joanne Dahl and Tobias Lundgren. It is about using something called Acceptance and Commitment Therapy to ease chronic pain. A few years ago I gave a talk on it at one of the national conferences up in Portland, ME. I had the pleasure of speaking with Dr Dahl at length before I put my presentation together and pick her brain a bit and it was very helpful. I am trying to figure out a way to put some of the parts of the video presentation of that talk on our website.

You should be able to find a copy of the book on Amazon.

Another book that might still be out there on Amazon, used copies maybe, is called Persistence is Power by Jeanne Lazo. Good book. Some of the info may be out of date now but most of it is very good info.

Another author to check out is Dr Allan Chino. He is a psychologist who specializes in behavioral pain management. His most popular book is called "Validate Your Pain, Exposing the Chronic Pain Cover-Up". It is available on Amazon as well.

Dr Chino is a past governor appointee to the Oregon Pain Society and has worked tirelessly on behalf of pain patients. He also has spoken at a few of American RSDHope's past conferences.

So check these books out and see what you think, let me know!

have a great week,

Keith

Dead Links? Prior posts have links that don't work?

2011-11-22T10:09:00.001-05:00

BTW, if you are reading any of the old blog posts and you come across a link that does not work, it is because it is linked to the old website. Chances are the information is still with us, just on the new site in a different place. Let me know what you need and I can direct you to it.

The website address is still the same but the site is all updated!

If you haven't been yet, check it out!

Take care, Keith

American RSDHope

Radio Show - National Awareness Month 2011

2011-11-22T09:55:00.003-05:00

Hey everyone! Happy National CRPS Awareness Month 2011!

Happy Thanksgiving 2011!

If you were not following our new website you might not have seen that I was on one of the internet radio call-in shows last week. It was a 60 minute show, that they graciously extended to 90 minutes, to discuss CRPS / RSD and let me share some of my story and thoughts.

If you did not get to hear it you can go to the THE WEBSITE and listen to the show in its' entirety.

It was a great deal of fun, Marla the hostess is very funny and has a great outlook on life. We had some great callers and questions and both Marla and I have promised to do another show again in the future. I think she is very lucky to get to do this every week! She gets to talk to so many interesting people.

If you get a chance look through her show archives. One of her past guests was someone I have talked about here on the blog, Dr Spiegel. The Dr who I think is one of the best in the country at performing HBO Therapy. He even gets a chance to discuss something very near and dear to him, his charity work with returning soldiers. It is an amazing program that is growing by leaps and bounds.

The new look to the website, RSDHope is getting great feedback. Thanks everyone! It took a lot of work but it was worth it. If I was one of the "normals" (those people without disease of any kind) it probably would have been done in 1/5 the time it took me, but with all the cognitive issues to deal with everything takes so much longer. Plus, when you can only sit for so long at a time, well, you guys know where I am coming from.

There was an excellent article today from ABC News on Sjogren's Syndrome! I don't know if anyone else out there with CRPS has this but it is a real pain in the tuckkus!

After reading it if you think you might have it click on the link to the Sjogren's Syndrome website. It is a great website that has everything very well spelled out. It is easy to understand.

Well guys, have a wonderful holiday and if you have any questions, just shoot me an email. Check out our website and let us know what you think.

Peace all, be good to one another as they say,

Keith

American RSDHope

How many Americans Suffer from Chronic Pain?

2011-08-27T23:05:00.002-04:00

One Million?

Five Million?

Ten Million?

More?

Fifty Million?

No googling the answer now. No cheating!

Would you believe ... 100 Million Americans suffer from Chronic Pain?

In a June article on WebMD by Salynn Boyles they discuss the cost, around $600 Billion, a YEAR! And they say that is probably underestimated because it does not include the military and children.

Now we know that since the war in the gulf more soldiers are coming home with chronic pain due to the extreme nerve injuries from the IED's (and since they have been making them for many years can they stop calling them improvised already?), and every year more and more children seem to be getting diagnosed with chronic pain, so this number in my opinion, is waaay off. That would also make the 100 Million number off as well. But it does give you a good idea of the chronic pain problem in our country.

Years ago it was kind of the secret no one wanted to talk about. If you had someone in your family who suffered from chronic pain, they weren't able to work, they endured an endless chain of Drs trying to find the correct diagnosis, or were in search of the right combination of medication and/or treatment no one wanted to talk about them.

They were often labeled malingerers, layabouts, or other such things. Especially if they were unable to get correctly diagnosed. Think about some of the diseases that have only recently been accepted by many physicians as "actual diseases" with real symptoms but in actuality have been around for many, many decades as have their victims; Fibromyalgia, Complex Regional Pain Syndrome (formerly known as Reflex Sympathetic Dystrophy Syndrome), Epstein-Barr, Chronic Fatigue Syndrome, just to name a few. It wasn't too long ago that patients with these diseases were thought to be making up their symptoms.

Chronic Pain has often been called the "Invisible Disability" because so often you can't see pain. But ask any chronic pain patient if they can identify another CP patient and they will tell you absolutely!

So next time you see someone parking in the handicapped spot, that has a handicapped plate or placard but doesn't look handicapped to you, before you start thinking "He/she doesn't look handicapped to me!", think, "I hope they aren't in pain."

Take care, and be safe,

Keith

American RSDHope

www.RSDHope.org

American RSDHope launches new site!

2011-08-17T08:09:00.002-04:00

Yeah! Finally the new site is up!

You thought it wouldn't happen!

It took longer than we thought, the previous site was so huge, thousands of pages, but the new site is up and running and looks great!

www.RSDHope.org

what do you think?

Been pretty hot here, in the high nineties, high humidity, combine for a heat index of around 110!

Need to be up north, just not waaaay up north again. The thought of moving is vexing, never a fun proposition but sometimes you have to do what you have to do for your health. This heat is simply too difficult. The summer months in Florida are overpowering sometimes. We think we have found the perfect place and hopefully that will be happening soon.

Ok, so check out the new site, let us know how you like it and we will get to some questions later this weekend!

Have a great week all!

Peace, Keith

Pain is Tiring

2011-08-01T00:54:00.002-04:00

One am, up again. as usual. I know that all across the country there are chronic pain patients; sitting at their computers, mindlessly watching tv, possibly struggling through a book, or maybe staring into the fridge for the fifth time that morning. What do we all have in common?

Insomnia.

Of course if we share that word with the "normals" out there, our well-meaning friends, our loved ones, all of those who truly mean well, they will share their stories of long nights, the times they couldn't sleep, their family member who had trouble sleeping, or perhaps offer up an old family recipe for a sure-fire sleep-aid; not really understanding how diseases like CRPS and Fibromyalgia, and other types of chronic pain, impact the sleep cycle.

If any of you have ever had a Sleep Study you know how amazing the actual results are; not surprising, just amazing the actual numbers are. They tell you how many hundreds of times per hour you "come awake", how your body does not achieve REM sleep, and explain how pain patients, especially Fibro patients, are constantly awakened during the night and never achieve any real, deep, healing sleep.

You can take it a step further if you are a CRPS patient, especially if you have systemic or full-body CRPS and have severe allodynia; this means a heightened sensitivity to even the slightest touch (could be the sheets on the bed, nightgown/shorts, or even the pressure of the bed itself), vibrations, etc. And even the smallest noise can wake you up if you DO get to sleep because you are extremely sensitive to vibrations. It sounds strange to the partners of CRPS patients out there but we can sometimes feel the change in the room when someone walks in, definitely when a cat or a dog walks across the bed, a fan blowing across the bed, and every little noise outside our windows (motorcycles, trucks going by, people on the stairs or on the street, etc.), all of these things take us from the shallow sleep we might have attained back to a state of being wide awake.

Medications? yeah right. We have tried them all right? They just make us dopey so when we get woken up we can't do anything, ha ha. I think one of the worst feelings is when you are under sleep medications, finally deeply asleep, and get woken up and feel yourself being pulled to the surface of wakefullness (is that a word). Not sure how to describe that other than it feels like you are under water and being dragged to the surface. It might be because a smoke alarm goes off, your child/animal is getting sick, you hear someone yell, a crash nearby, a phone ring, knock on the door; whatever it is. You get pulled out of your sleep. Yikes, it is horrible. Then you get a headache and no chance of going back to sleep.

Normals say, ah, I am going back to bed. But once we are up, pffft, we are up. It stinks.

So, our loved ones are saying to themselves, "Should I not sleep with them? Should I sleep in a separate room so I don't disturb them? Walk on eggshells around them not to wake them? I am afraid they never get any sleep I don't want to wake them when they are sleeping!"

I can understand that thinking, I truly can.

Here is my answer, and I can only speak for myself. I don't want to sleep by myself. I need that contact, that closeness. If I need to be off by myself I can certainly move to another room but always assume I want you next to me, always!

I know that for some patients that is not the case. They prefer to sleep by themselves so it does not hurt to ask, to have that conversation. Be open with your partner about this and all things relating to your pain and disease folks. It will only help in the long run.

As to the noise issue and walking on eggshells? Again, I understand that thinking as well. Again the answer is communication. Talk with your partner. If they need quiet, find a place where that is possible, maybe you can arrange to make one room a quiet room; find an inexpensive way to add some soundproofing to some walls, rugs to the floors, etc. Make it a part of the house that is the furthest away from activities, if this is an issue. Arrange activities so when the patient needs quiet, activities are at a minimum. Or you go for a walk during that time, or you are out with friends, at a book club, or maybe volunteering while they are resting.

But, if they share with you that they are ok with some noise, even if noise bothers them, accept that answer. Sometimes we need to know there are people around. It seems strange but there it is.

Patients can also use sound machines to mask noise. I have used one for years now and it helps a great deal. The rain and waves sounds are my favorites. I also have taken to listening to Hemi-sync CD's. They have helped me a lot, in addition to my meditation. I will be talking more about these two topics next week. it is an exciting topic and there are a great many cd's out there to choose from. I have ordered some new ones I am very excited about getting.

Ok for now folks. Stay cool. Seems everyone is getting blasted with heat across the country.

Looks like the website launch is going to happen this week which is also exciting. Hope everyone enjoys the new look.

Peace, Keith

Where have you been???? - where are all the posts?

2011-07-25T07:22:00.004-04:00

It seems in the transition all the posts are gone from the last year. Bummer.

I have been so wrapped up in getting the new website taken care of, as well as medical stuff, moving to a new city, and so many other things, that I didn't notice that the blog posts had disappeared for the last year!!! It was only after Cathy wrote me to ask why I hadn't been writing anymore. (Thanks Cathy!)

Oh well, so much amazing stuff. I will try to reconstruct it someday perhaps.

Let me catch you up.

It is July 25th. 2011.

Ok, you are caught up.

Seriously, we are FINALLY ready top unveil the new website! Yippee! Yahoo! Google! Oh sorry, got carried away.

It should be opened sometime this last week of July, 2011. We are just testing the store program to verify it works correctly. You might wonder why it took so long for this project?

Well, we originally tried to hire someone to do the job of re-writing the website. The site was originally written in MySql, database driven, stack upon stack of information. Basically meaning it was originally never intended to be as large as it turned out to be. We built a one story shack and kept on putting on additions without changing the foundation. Eventually that little shack became a skyscraper and it was leaning badly. It started crashing a lot due to hackers who found a lot of security holes. We knew we had to make some major changes.

The people we talked to looked at the size of the site and said they would not even touch it. Too big a job, too time consuming. We would have to do the majority of the work before they would get near it. I even tried a few colleges to see if they would take it on as a project. No dice.

In the end we had to bite the bullet and do it ourselves. My computer guy built the bones of a new site on weebly, setting up some of the basics for me, and then for the past six or eight months I have been re-writing a section at a time and moving it over there. We also have eliminated quite a few sections as you might have noticed (if you have been there already).

What we have attempted to do is streamline the website, make it solely about CRPS, information, education, and understanding the disease. we eliminated many of the sections that did not directly hit on CRPS itself since now there are hundreds of support websites out there that touch on these areas.

For some people the new website will be a shock, they are so used to the look of the old one. But we think they will get used to it quickly. It is far more easily navigated, information is easier to find, once you get used to the lay-out, and we believe it will be used by more medical professionals as well (especially the ones you send there), and that will help your cause a great deal, because it does look more professional.

So let us know what you think about the new website. Be kind, it took a great deal of work ;-)

It does get difficult to do such things when you are limited to working an hour here and there because of your pain, the amount of time you can sit, how much your eyes hurt that day, what your pain level is, how asleep you are, etc. You guys know what I mean since you also live through this every day.

So, enough on the new site.

What topics do you want to cover over the next couple of months? Send me an email and let's debate some.

Thanks for listening!

Peace, Keith

www.rsdhope.org

idle no more

2010-06-23T09:39:00.002-04:00

Sorry for being so idle this year folks. I will be be back posting this week and get back being busy again here. We have been working on retooling the website and it has been keeping us very busy. It is getting a major overhaul and that isn't easy when you have a site with thousands of pages! Plus, because it is so busy we have been keeping it live during the overhaul so that has made it doubly hard.

But I have been neglecting this blog and that isn't good.

So updates are coming this week, June 23, 2010, promise!

Peace, keith

American RSDHope

Response to Robin - What specifically ...

2010-06-23T09:28:00.004-04:00

Robin;

If you go through the blog it gives great detail as to the steps they took for the HBOT, it was pretty explicit I think, at least I tried to be, as to what they did each treatment. It is a fairly long and involved process and it changes every few treatments. In other words, your techs need to be able to adjust as you go along. It isn't set in stone the exact depth and so forth with CRPS patients because everyone is a little bit different. You may need to adjust a little up and down, the length of the time you need to take to achieve depth, to come back up, and of course the exact depth that works best for you.

Also, the exact depth you go to will change slightly depending on what treatment you are on. You start at one depth then that will change as you go along. That method seems to work the best. if you use the exact same depth the entire 20-40 dives, the likelihood of achieving much relief is pretty small.

What really concerned me about your comment though was your description of the therapist using, insisting, on the use of ice packs to treat the CRPS. If they KNOW you have CRPS and STILL insist on the use of ice packs, they do NOT know how to treat the disease and you need to find a new place to be treated. Not only can you do long-term damage to the protective sheaths surrounding your nerves, but you can accelerate the disease through the stages and/or cause it to spread.

Please go to our website and read the section on Physical Therapy and specifically the parts that discuss the use of ICE. PLEASE! ASAP

PHYSICAL THERAPY AND CRPS

If you have any further questions, feel free to email me directly at our website or at rsdhope@mail.org

Peace, Keith

American RSDHope

www.RSDHope.org

HOW DO YOU EXPLAIN THE EVERYDAY UPS AND DOWNS OF LIVING WITH CRPS / RSDS ?

2010-01-04T23:16:00.003-05:00

How do you explain how everyday life impacts Complex Regional Pain Syndrome to your friends, family, co-workers, loved ones? How do you explain it to those people who you see far less often like the people who handle your Workman's Comp claim or Social Security Disability determination?

How do you even go about trying to get across to your boss, if you are fortunate enough to still be able to work, that due to the changes in the barometric pressure I can't come in this week? That it makes your pain worse? If you have even been able to share with them that you deal with pain everyday (I know some people are concerned if they share that they may lose their job and/or benefits).

Do you simply say "Sir, because the weather has gotten extremely cold this last week and the barometric pressure has been going up and down like a ride at a cheap amusement park my pain has been off the charts." And then hope they don't fire you when it turns into many, many days in a row?

Or how do you explain to your friends that you can't go out with them, again, because the weather has been so cold every night? They tell you to just put on a jacket and deal with it and you try to explain, again, that a jacket doesn't really help, that the cold affects your blood vessels and it is more than the cold it is the change in pressure and once your pain starts going up it is like trying to catch a train that has left the station. But you know your words fall on deaf ears.

How do you explain to that WC or SSD representative who filmed you coming out of the place you volunteer once a week, or the restaurant you just visited with friends, or maybe a ball game you went to with your kids, that now it will take you the rest of the night and the next day to recover from an event that "normal" people take for granted; and only if you take a few extra meds and make sure to do not much of anything during that rest time?

Or that the only reason you were able to handle that event in the first place was because you took your meds in the first place and made sure to get extra rest ahead of time and still knew you were going to pay the price in extra pain by going, but that having a disability doesn't mean you have to shut yourself off from every fun and enjoyable thing in the world. It just means you have to be smart about the choices you make.

No one can know what it is like, no one can truly understand, no one can make those judgements about you, not even those people who are paid to make them and really think they understand, unless they walk in your shoes.

We have an article on our website written by a former insurance adjustor who later ended up with CRPS. He writes how crushed he felt when he looked back on the judgements he made on people by only looking at snapshots of their lives without realizing the impact his decision had on them and how until you looked at the totality of their days and weeks you could not comprehend what it was like living with this disease, or many other chronic pain diseases.

If someone has a lot of time on their hands and wants to search for it, please do.

I don't remember the link off-hand, there are so many articles on the site :-D

So how then do we help our loved ones, friends, and co-workers understand that we are more than what they see? That it takes a great deal of effort to participate in the events we do attend and that what we need most is understanding and acceptance?

One of the polls American RSDHope took asked the question, "What one thing would you like your Family to know about RSD? The pool was taken way back in 1998 but I think the answers are pretty relevant still today;

SEE THE ANSWERS HERE

And then we asked "What one thing would you like the Public to know about RSD?"

SEE THE ANSWERS HERE

I think you will find the answers to these questions interesting and might want to share some with your family and friends.

Also, if you haven't read the "LETTER TO FAMILIES AND FRIENDS OF RSD/CRPS PATIENTS", or passed it on to your loved ones/friends, you might want to check it out. I haven't updated it in a few years and there are a few people on the internet who have tried to copy what I have done but this is the original :) It has been downloaded and/or forwarded almost 7,000 times already and who knows how many times it has been read. So it must be fairly helpful! If you have any suggestions on how to improve it, please pass them along and I may include them in the next edition.

BTW, there is an option on all of our webpages at the top left-hand corner to "refer this page to a friend", that sends the url of the page to whichever email address you like and lets you include a short note as well.

What else can you do?

If your boss knows about the disease and you think it might help, maybe you could sit down with him and give him/her a quick tour through the website, pointing out the basics; CRPS description, definition, signs, symptoms, etc. This way they might be more understanding when you do have those bad days and offer you options such as working out of your home, taking work home during bad weeks, or offering a more ergonomic work space, etc. Perhaps sharing some brochures with your office partners would be helpful? Maybe they would allow you to set up a CRPS information table at the next health expo your company hosts?

CRPS BROCHURES AND OTHER MATERIAL

There are always options if you are able to open a window of communications. I do realize though that sometimes you cannot share this information, that you may not feel your job would be safe if you did.

How do you improve understanding among your friends/family, besides sharing the website, friends/family letter? Again, share some brochures, maybe mail them to them or bring them by to lunch and take a quick minute to go over them. I have done that with some new friends and they were happy I did. They had no idea the disease was so involved and actually had it confused with Fibromyalgia. It also allows them to ask what they might otherwise had thought to be "stupid questions" or maybe even what they were worried might be embarrassing ones to you. This gives them a venue to do so. Let them know that they can always come to you with any question they have about the disease, a symptoms, or even if they think someone they know might have the disease.

I also try to explain to them what I have to do the day before and the day after a big event, such as going to a ballgame with them, including the extra pain I will be in by going, BUT making sure to add how I still go because I WANT to, I enjoy it and realize that there is a price to do so. That I would be in pain whether I go or not and that as long as I prepare my body before and take care of myself after, I can manage.

Look, a diabetic manages their disease and their life with their disease. Someone with arthritis does as well. If you lost a limb and were in a wheelchair because of it, you would have to make allowances as well. If you had a vision or hearing loss, you would make lifestyle adjustments.

Living with chronic pain requires adjustments to how you approach life. Unlike most other physical disabilities and diseases it usually requires constant adjustments, granted. And you may have to cancel events at the last minute, but if you manage your medications, your diet, your exercise, your mind, and your overall health you can have a real life; with friends, family, outside interests all involved and in an enjoyable way. It takes time to determine the proper balance and to get everyone on the same page but it is worth the work.

Life is too short to spend your life stuck at home. There are far too many wonderful experiences and people out there waiting for you to enjoy!

Just my two cents :)

Peace, Keith

American RSDHope

CRPS DOESN'T MEAN YOU HAVE TO STAY AT HOME

2009-12-26T06:12:00.003-05:00

I wish to suggest that a man may be very industrious, and yet not spend his time well. There is no more fatal blunderer than he who consumes the greater part of his life getting his living. All great enterprises are self-supporting. The poet, for instance, must sustain his body by his poetry, as a steam planing-mill feeds its boilers with the shavings it makes. You must get your living by loving.

I often get the question, "Now that I have CRPS what am I supposed to do? I can't work anymore, I have most most of my friends, many of my family doesn't understand ... all I want to do is stay at home because I hurt so much and the less I do the less I am going to hurt more."

I do understand. Having had this disease for 3 1/2 decades now, as well as other forms of CP, I know all too well the social issues that go along with having a chronic disease enter your life;

1) Friends fall by the wayside as you are no longer able to do the fun things you used to do together.

2) Family members who may not take the time to learn about your disease may feel you are "letting your pain control your life", or even that you are exaggerating your pain. Especially when it comes to a disease like CRPS that is so little understood.

3) Many patients lose their home and/or much of their life's savings due to medical bills, lost wages, etc.

4) Struggles within the family unit as the stresses due to all of the above and the actual disease itself impact the family like an atom bomb going off.

It is easy, considering all of the above, to let yourself curl into a ball, hide in your home, stay on the couch, and hide from the world. But thinking that by doing so you will be in less pain, by avoiding any possible behavior that could increase your pain will only serve to further insulate yourself and could put you into a deep depression.

Your pain will be there, still be there, whether you leave your house or stay. Whether you venture out into the world or stay and watch ten hours of TV a day. So you have a choice;

1) Get involved somewhere, out there.

2) Stay in your cocoon and build more layers of protection, further separating yourself from life.

If you do venture out it is true, you will probably increase your pain somewhat, for a short time. But it may just improve your quality of life. So now you may ask, What is I can do? My pain doesn't allow me to do much of anything for any length of time? I can't work, I can't do the activities I used to do? What's left?

A good way to get back involved in the world is to volunteer. Volunteers are needed all over the country, the world. In every aspect of your community. Do you like animals? Volunteer at an animal shelter. Belong to a church? There are many opportunities there. Like working with kids or young adults? Talk to your local school or community center. Have business experience to share? Talk to your local Rotary Club or Community College.

There are some wonderful reasons why volunteering works for people with chronic illness;

1) You can almost always set your own hours, how much you work, how often, which days, etc. Volunteer as little as two hours a week or three days a week, whatever your pain will allow you to do.

2) You are able to work with the volunteer coordinator, explaining your disability and why you are limited in the time you can volunteer. They are used to working with the disabled and working around your limitations.

3) These types of organizations are extremely appreciative of any assistance you can provide.

4) It is a very rewarding experience.

5) It gives you a mini-vacation from your own pain.

6) It opens you up to a whole new group of people who don't know you as that "person with CRPS" but rather as that new volunteer with the great attitude. And usually the other volunteers are also very nice people with very positive outlooks.

All these thing combined help to give you a more positive spin on life in general, even if you are only there a few hours a week.

I volunteer, not only with American RSDHope but with a local organization. It isn't easy and it is only for a few hours a week. There are many weeks where the day after I volunteer I am in a great deal of pain. But even with the extra pain, it is worth it.

My parents always taught me; Gods gift to me was my life, my gift to God was what I did with it. Whatever your religious beliefs, man has a debt to his fellow man. And if if it helps you in the process? More the better!

peace to you this holiday season. May you start out the new year with a renewed sense of purpose!

Keith

American RSDHope

www.RSDHope.org

HOW TO COPE WITH CRPS / RSD ON A DAILY BASIS?

2009-08-30T09:55:00.003-04:00

Hello Everyone!

Back to School time for many of you, either for yourself or your children/grandchildren means some added stress. Remember that that can also mean some additional CRPS pain, especially if you don't allow some extra down-time. Find some quiet times and some quiet corners during your day and evenings where you can be by yourself or at least where you can exert a increased level of control over the sound, noise, and vibrations and thereby reduce your pain or at least keep it from spilling over the top :)

Practicing these techniques and actively thinking about them each day can help you significantly. Try to make it part of your PCP; Pain Control Package;

1) DIET - Certain foods can make your pain better or worse, check out the chronic pain diet.

2) EXERCISE - especially aqua therapy in a warm water pool. The wrong types of PT an do a great deal of damage.

3) MEDICATION - The right combination of medication that addresses all your symptoms, just enough so you can function but not so much that you are sleepy.

4) ATTITUDE - How you approach your disease, how you decide to live with it, in spite of it, makes all the difference.

5) MEDICAL TEAM - Having a good physician, pharmacist, and for some, a psychiatrist, is very important in the management of the disease.

6) MANAGE YOUR ENVIRONMENT - This simply means BE AWARE of what in your house, workplace, friends home, etc. causes your pain to increase or decrease and adjust accordingly; A/C, fans, noise, dogs, children, TV, rest, neighbors, loved ones, stress, etc.

7) EDUCATE YOURSELF AND YOUR LOVED ONES - Use sites like American RSDHope and the RSDSA to learn about the disease. Arm yourself with the correct information and beware of sites with outdated and incorrect info.

The bottom line is that even though CRPS is ranked as the most painful form of chronic pain that exists today, if managed well, CRPS isn't a death sentence, don't live your life like it is.

NEW ARTICLES

For those of you who are new to the website, we don't normally send out many bulletins. People pretty much know where to look on the website for the latest additions to the website. We have MEDICAL ARTICLES sections, COPING WITH PAIN ARTICLES sections, etc. Inside those are many, many sub-sections and hundreds upon hundreds of articles with some of the latest information including the source URL's.

We put some of the new articles in the WHAT'S NEW section at the top of the website but not all so be sure to check into your favorite sections at least once a month or every couple of weeks. If you come across a chronic pain or CRPS article you believe fits on the website please email it to RSDHope@mail.org for consideration.

We also have very popular sections on Poetry by CRPS patients, humor sections and more. if you have submissions for those sections please send it to the same place :)

We have an on-line catalog where you can buy CRPS/RSD Awareness items with the profit going to American RSDHope's awareness programs or to sustain our organization. We have everything from T-shirts and sweatshirts with the national CRPS/RSD Awareness ribbon on them to national awareness bracelets and the national CRPS/RSD Awareness ribbon magnets for your car, and much more. Just pop by the website and you will find the link at the top of the page.

www.RSDHope.org

MENTOR PROGRAM

Our Mentor program is always looking for new Mentors. It is one of our busiest programs and if you are interested in helping your fellow pain patients, drop Karen and/or Lynne an email RSDHope@roadrunner.com

You can read more about the Mentor program on the website :)

ROCHESTER, NEW YORK - PHYSICAL THERAPIST

If anyone lives in the Rochester, NY area we have a patient who is searching for a Physical Therapist in the area who has a very good knowledge of CRPS and how to treat it. As we all know there is a world of difference between someone who knows how to treat CRPS and someone who doesn't. Far too many patients have been advance through the stages of CRPS by incorrect physical therapy; such as the use of ice, ice packs, hot/cold contrast therapy, etc. The damage to the nerves becomes so extensive the patient not only has their pain worsen but many times it spreads as well.

So if you happen to know of a CRPS-experienced physical therapist in the Rochester, NY area, please send an email with their information to RSDHope@mail.org and I will pass it on to them.

QUESTIONS ON MEDICATIONS, NERVE BLOCKS, TREATMENTS, etc.

We get lots of emails from patients concerning which medications they should be taking, what nerve blocks they should try and when, which treatments help, don't help, questions concerning physical therapy, etc. While we enjoy hearing from everyone most of the questions we get have been answered in great detail on the website and so we usually end up referring people back to the website.

The information there has been gone over by physicians, checked, re-checked, and is the most up-to-date available. We also tried to put it in very understandable language. Sometimes these things are written so only those with Phd's can understand them, which is fine if you have one but if you don't you are SOL.

There are separate sections on the website for everything from Drug Therapies to Nerve Blocks, CRPS Descriptions to Stages, to the latest articles on everything from Medication to those standing strong in the struggle. Need a boost? Check out the Poetry section. Need a laugh? Check out the humor section.

Information regarding this disease has come a longer way and we are blessed in that we patients and loved ones can educate ourselves a hundred times over what used to be possible. Take advantage of it.

So always check the website first. Use the Search box if you aren't sure where to look or use the link at the top of the website (navigating the website). You will learn your way around pretty quickly. You can send any page on the site via email to your friends and family as well. Doing it this way saves you time and you can get more concise answers.

American RSDHope

But don't forget to drop us a line once in a while too. It gets cold and lonely up in Maine in the winter time!

SUPPORT GROUPS

We have been getting a lot of emails from people wanting to start a local support group and not sure how to go about doing it. Having worked with a local group for about a year now I can tell you first hand it isn't an easy thing even if you have a great group of eager individuals. It takes a key group of dedicated people to get it off the ground and then to keep it going.

So, we need some of the long-lasting groups out there to send us your suggestions; what have you done to keep your meetings interesting? To keep your members coming every month, or other month? How did you get your group started and what would you recommend yo someone else who is just starting? What mistakes did you make they should avoid? What special events have you held that were successful? What else would you care to share?

Send these tips to RSDHope@mail.org and we will place the best ones on the website in the Support Group area for all to enjoy and benefit from! Thanks everyone!

That's it for now!

Thank you,

Have a wonderful day everyone! Thanks for visiting American RSDHope and for all of your kind emails, post cards, and letters and of course, your very generous donations. We survive on your donations, they keep us going and help us to provide our information to the thousands who visit our website every month! Eleven Million hits and counting!

You can make your donations directly to the website American RSDHope

All tax deductible of course!

Peace;

Keith, Karen, and Lynne!

American RSDHope

www.RSDHope.org

NOVEMBER IS NATIONAL CRPS/RSD AWARENESS MONTH

JUST A REMINDER !!!

SEPTEMBER IS PAIN AWARENESS MONTH

2009-08-30T09:50:00.002-04:00

September is Pain Awareness Month and the American Pain Foundation is asking everyone to help spread awareness by signing a petition.

Here is a quote from the text on their website;

" In recognition of September as Pain Awareness Month, the American Pain Foundation (APF) announces the launch of the Conquering Pain Together project (www.conqueringpaintogether.org). “Conquering Pain Together” is an exciting new public awareness campaign that will be the focus of our efforts during the month of September—there are ways forEVERYONE to contribute to this campaign! Professional presentations and community events are planned in communities throughout the country to highlight the need for improved access to appropriate and effective pain care. The Conquering Pain Together site directs visitors to an online “I COMMIT” petition (don’t wait, sign on NOW!) and features a list of planned local activities to bring the topic of pain to the forefront. The site also includes an easy-to-use toolkit with materials to raise awareness about pain issues in communities and information about what YOU can do for the first-ever National Day of Action scheduled for September 26th. WE ENCOURAGE YOU TO TAKE ACTION AND JOIN THE MOVEMENT. "

If you visit the American Pain Foundation website you will see the story on September being Pain Awareness month and the link to the Petition. Pass it along to your friends!

In other news, we just sent out a little news bulletin, not really a newsletter just a few simple thoughts we wanted to pass along. I will share some of them in the next blog, which I will publish in a few minutes, in the hope that they will help some of you.

Peace,

Keith

American RSDHope

CRPS - Why don't all injuries end in CRPS?

2009-07-16T08:27:00.001-04:00

Why don't all injuries end in CRPS/RSD?

Sorry it has been a while since I have posted on the blog. I have been having some connection issues with verizon. Still not much better but now and then I can get through and get caught up.

Just a quick one today to see how it is going to work.

We get this question a lot, why don't they all end in CRPS?

I ask myself this question every time I watch America's Funniest Home Video's and see those people; fall off houses, off of bikes, landing on their backs, bouncing their bodies on the sidewalk, and a hundred other ways they get look to get injured but seem to bounce right back up and even laugh it off.

I don't know whether to cringe or call them an idiot or both. Usually both.

While at the same time we hear from people who have developed CRPS from things as simple as stubbing their toe or maybe while just playing sports or enjoying their favorite activity, but not doing it in a crazy way.

So why do some get the horrible life-changing pain and others seem to bounce through life like a drunken bowling ball in a lane with bumpers?

I have only seen one study so far that really addresses the issue in a scientific way. There have been other articles written where people have made educated guesses as to why some people are more susceptible. But these guestimates have as many ridiculous answers as they have plausible ones.

But the credible study described how they believe that the brains of CRPS patients, and those who suffer from CP in general, are different. That our pain pathways are actually wider allowing for more pain signals to pass through increasing the likelihood of a chronic problem to set in. That is a watered down version of the research of course but you get the gist.

They didn't find any certain type of personality was more susceptible but it does seem that more Type A personalties have the disease.

The RSDSA recently completed a survey of CRPS patients to update the numbers and what they found was interesting. It updated a lot of the numbers that American RSDHope had from their last survey in 1998. Some things did change, such as the number of Drs that were seen before getting a correct diagnosis ( a lot less now) but others didn't (still about a 4 to 1 ratio of women to men).

I will talk about some of these in my next post assuming this goes off without a problem.

In closing,

I wanted to ask if anyone is affiliated with AT&T and so can help us, American RSDHope, in obtaining a discount on an I-Phone and/or it's accompanying monthly phone charge for one of the board members?

If so, drop us an email at RSDHope@mail.org

Thanks guys!

Peace, Keith

www.RSDHope.org

Oxycodone dhortage, FDA information

2009-04-17T04:54:00.003-04:00

I have to apologize for being gone a while. I have been undergoing some surgeries these last few months.

In the next blog I will share some tips on how best to handle surgery as I learned a lot between the two.

But first I wanted to share some information on a very hot topic; the shortage of oxycodone across the country. This is causing a real problem for chronic pain patients. If you have run into this already and haven't learned why, please check out the following link for more information;

copy and paste the following link into your browser;

http://www.rsdhope.org/Showpage.asp?PAGE_ID=170&PGCT_ID=4733

If you have any questions, drop me a line at RSDHope@mail.org

peace, Keith

How many HBO Treatments does it take for CRPS patients to notice a difference in their pain?

2009-04-17T04:48:00.002-04:00

Someone asked "How many treatments does it take to notice a difference?"

I wanted to share the answer here because it is a great question.

It really depends on the patient. There are just too many factors and variables to say specifically; "ten, fifteen, or twenty-five".

You have some patients who have had the disease for 1 year or ten years, have it in one limb or full-body, have CRPS Type I or Type II, or even a combination of the above.

Then you add in the various methods used by different clinics; depths used, lengths of treatments, etc. and you have different success rates.

Then add in how the patients follow the suggestions given in blogs like this and by the technicians themselves regarding how to deal with the treatments; taking supplements, getting enough rest, eating properly, getting through the wall, etc.

So you can see, there is no easy answer. It will be different for everyone.

Hope this helps!

Peace, Keith

American RSDHope

www.RSDHope.org

CRPS Update - February 15th

2009-02-15T04:36:00.002-05:00

Wow, what an interesting bunch of weeks it has been.

I have been dealing with some medical issues, not related to CRPS, and one of them led to my having surgery. The surgery went well but I developed a problem following the surgery due to the placement of the IV and the amount of time I had cold fluids going into the area of the IV. It caused a lot of swelling and pain. I was extremely concerned about bringing back the CRPS in an area that the HBOT had sent it into remission.

After two days of using pain patches, increased meds, etc. to no avail, I contacted Dr Spiegel. He is the Dr who did my HBOT. He suggested I come in right away and do a couple of dives to reduce the inflammation, thereby reducing the pain.

WOW!

Even though I have experienced the benefits of HBOT before I wasn't prepared for the immediate relief it gave me. After the first of the two treatments the pain was cut by 75%, after the second and last, it was cut by about 90%. Thanks Dr Spiegel!

People have posted here and emailed me asking how the HBOT relief has held out. It is holding out very well. I am very impressed with the relief I got and how long it has helped. The main areas of my CRPS pain now are pretty much what they were at the end of the treatment.

Remember, I had it full body. That means from head to toe, all four limbs, face, top of head, neck, shoulders, back, chest, eyes, ears, etc.

Following my treatments it was reduced to the eyes (original site from 1974), ears, feet, lower left leg, and hands. That is pretty much where it is now.

Cost? I saw a report that said HBOT was extremely expensive. My question, which they never asked, was "Compared to what?" Plus, it is non-invasive, unlike so many of these other treatments and implants that require surgery or surgeries. But I digress :)

Off I go.

Take care folks. It is rough out there right now.

Keith

CRPS Treatments

2009-01-15T17:22:00.002-05:00

Oh boy. Lately I have been getting inundated by "patients" writing to me in support of this or that Doctor, or this or that form of treatment for our disease who promise a "cure" for our disease.

Here is the problem.

They aren't pain specialist, they have no published reports, studies, articles, or anything that shows their "treatment" has been reviewed by their peers and been shown to be an acceptable, credible, and successful form of treatment for our disease.

Most of these new "treatments" or "procedures" aren't even covered by insurance.

So what is a patient to do? What is someone with CRPS, who is desperate for pain relief, desperate to have en end to their pain, who is being told by a medical professional that they can end their suffering, what are we patients to do when confronted by such a choice?

All too often we become so desperate for relief that we are more than willing to try anything. We don't always think through the consequences, the long-term ramifications, the possibilities for problems that can result due to this procedure, treatment, machine, protocol, implant, etc.

I know it isn't the easiest thing to do but we have to stop, think, investigate, and research, ask, and think some more.

1) Investigate both the physician and the procedure, treatment, device, etc. as thoroughly as possible. Use the internet, check out reputable websites; American RSDHope, RSDSA, NIH, WebMD, etc. Use these unbiased sources in addition to the Drs or companies own sites so you get a complete picture.

2) Talk to patients. Find a way to talk to patients who have had this procedure 6 months, 12 months, 24 months, and more, ago. Find out if they are still experiencing relief and/or if they have had any complications in the meantime. You may find that some of these treatments show early promise that fades quickly.

3) Talk to the loved ones of these same patients. They will be less likely to have a "dog in the fight" so to speak and will be able to present you with an outside-looking-in view of how the treatment and results went.

4) Is the treatment/procedure/device covered by insurance, WC, Medicare, etc.? If not, why not?

5) Research the Doctor. In this internet age that is very easy to do.

The bottom line is that patients need to protect themselves. Whatever you do to your body, or allow to be done, has long-term consequences, especially with CRPS. Even something as simple as a blood-test can cause an exacerbation of the disease so that should tell you something. It is an ornery disease :)

There are some wonderful Doctors, nurses, and physical therapists out there who spend every day trying to alleviate our pain. I have been fortunate in my life to have met quite a few. If you are reading this, thank you :)

peace, Keith

American RSDHope

CRPS - HBOT update

2008-12-23T05:53:00.002-05:00

Hey all,

the sun is shining, the grass is green

the orange and palm trees sway

there's never been such a day

in warm and toasty Tampa Bay ...

and it's December the 23rd ....

but I am not longing to be up north...

ah, sorry for those up in the great white north digging out from the latest nor'easter. Couldn't resist. Up in my old home-state of Maine, the family says they are digging out from 18 inches of snow just from Sunday's storm. They had 6 inches the Friday before, more a few days before that, and now they have another big storm coming on Christmas Eve. Oh, it is going to be a long cold winter.

Up north.

It has been 80 down here for the last couple of weeks BUT there is a chill-a-coming! The temperatures are expected to drop to the mid-70's for the next 7 days. Brrrrrrrrr. I will have to pull out the long pants.

Ok, I have had a lot of people ask me how my HBOT relief is doing. I have been remiss in not mentioning it but a lot has been going on down here.

As most of the readers here know, I underwent a series of HBO (Hyperbaric Oxygen) Therapy treatments in Palm Harbor with Dr Allan Spiegel. His clinic, National Hyperbaric Oxygen Therapy, is one of the best in the country. The staff is great, especially Dr Spiegel and his HBOT Technician Phil.

I did very well. My CRPS went into about 3/4's remission and that ended in September.

Despite a very severe fall in November that caused issues with my back and new disc issues in my neck, as well as a great deal of extra overall body pain for weeks, and other extra medical issues that I am dealing with right now, my CRPS seems to be doing fairly well. The HBOT is holding in most areas and that thrills me to no end.

The worst places for me are my feet and lower legs, especially left, and my eyes and ears. Those were the places that weren't touched by the HBOT. The areas that were helped by the hyperbarics are doing pretty well.

I was sold on this therapy after I went through it and still am. It doesn't work for everyone and it isn't a cure but the relief I have gotten (I have full body CRPS, true full body, head to toe), has been wonderful.

I may be undergoing some surgery in the coming year and other treatments, not related to the CRPS, so that will be a real test. But the good thing about this type of treatment is that I can always go back for some additional treatments if I need them, and they are non-invasive, AND they help people recover from surgery even quicker.

So that is the update! Thanks for tuning in and have a Merry Christmas from all of us at American RSDHope!

Stay warm :)

Keith

PS - To learn more about HBOT, check out our special section!

CRPS - Weather changes, do they affect CRPS? RSD?

2008-12-17T04:39:00.002-05:00

DOES THE WEATHER AFFECT CRPS?

Now that the winter season is upon us, for most of the country anyway, many patients are seeing changes in their pain although quite a few may not have ever made the connection. In talking to patients I often run into some who do not know that the changes in the seasons cause changes in their pain. They might have noticed that they get colder in the winter, that storms bother them, etc. but did not understand that there is the direct connection.

Barometric changes, especially drops in the BP, can cause increased pain for many patients. These can come from violent storms such as hurricanes and thunderstorms but they can also come with snowstorms and changes in the highs and lows you hear the weatherman describing all the time.

When you watch the weather next time, pay particular attention to when the next Low Pressure system is moving in and monitor your pain. See if you notice any changes/increases in your pain. Chances are that you will.

The other issue that CRPS patients face in the winter months, especially those who live in the colder, wintry states, is dealing with the extra pain that comes with the extreme cold.

One of the ways that CRPS patients suffer pain, (and I realize this is oversimplifying things) is from constricted blood vessels. These constricted blood vessels not only cause pain but also restrict blood flow thereby lowering the temperature of the extremities. When the temperature drops these blood vessels constrict further, increasing the pain and lowering the temperature even further.

The patient ends up in more pain and an inability to get their feet/hands warm.

So what do you do, to decrease the pain and effects of the winter?

Well, you could do what I did, move south! It is nearly Christmas and it is 70+ degrees here. But that isn't practical for most people so you need other solutions.

- Layered clothing helps, and definitely you need to keep your hands and feet and head covered as much as possible.

- If you have access to a warm water pool (85 degrees of more) that is EXTREMELY helpful, not only for raising the temperature in your extremities but also for keeping the chronic pain patient's body in shape and lowering their overall pain level.

- Soaking in warm water with Epsom Salts is very beneficial. You don't need fancy bath salts/oils but by using epsom salts your body absorbs the magnesium, which helps in restoring normal blood flow.

- Using microwave moist-heating pads (the kind with beads inside) helps as well.

What ideas have you tried that have helped? Share them here in the comments!

Have a great day everyone!

Peace, Keith

American RSDHope

CRPS AND MEMORY PROBLEMS

2008-12-05T08:01:00.002-05:00

Another in our series of popular questions we get asked at American RSDHope;

I SEEM TO BE HAVING PROBLEMS WITH MY MEMORY.

IS THAT PART OF CRPS/RSD OR IS IT BECAUSE OF THE MEDICATIONS?

CRPS/RSD causes short-term memory problems. This is due to problems related to the Limbic system of the brain. In addition to memory problems, changes in the limbic system can also cause depression and insomnia.

This is part of the Fourth of the FOUR MAIN SYMPTOMS OF CRPS.

For more information on more symptoms of CRPS/RSD see the following link; ADDTIONIAL CRPS SYMPTOMS

I think that perhaps this is one of the most difficult aspects of the disease to deal with for loved ones; aside from the financial impact and the issue of seeing your loved one in constant pain and having no ability to stop it. Dealing with someone on an everyday basis who forgets so much can be tough;

"When are we leaving?" "I told you, 3 pm", "No, you didn't", "Yes, we discussed this three times today" , "We did?" . "Wow, that movie looks good." "Yes, it was. we saw it twice already." an hour later ... "This movie looks familiar, I think we've seen it before", "You think?!"

And all of this can happen in the course of one morning!

Not to mention the difficulties that this causes with medications, Drs and medical records/histories, picking kids up, helping with homework, and so much more. It takes special and wonderful people to love CRPS patients! We appreciate them greatly!

Hope this helps!

Peace, Keith

American RSDHope

CRPS PATIENTS - FLU SHOTS

2008-12-05T07:36:00.002-05:00

It is well into flu season and if you haven't gotten your flu shot yet, best get your behind down to your Doctor, your local pharmacy, local clinic, or wherever shots are sold and get one! Or use the new mist if you have an aversion to the shots.

Most places will accept Medicare for payment for the flu shot.

Do you need to be careful of the actual injection itself? For fear of it aggravating your CRPS?

You should always take as many precautions as you can any time you have any type of injections; whether it be as simple as a flu injection (not normally a big deal) or something more involved like taking blood.

Make sure they do not use any needles in your CRPS affected area; if you have it in your arm/hand, make sure they use the other side for example. If you are having blood drawn, ask them to use the smallest needle possible, even if it takes a little longer to accomplish the purpose.

Why do CRPS patients need a flu shot?

Our immune systems are compromised because of the disease and we are more susceptible such things as the flu, coughs, colds, etc.

Remember, you can't protect yourself from everyone else who carries the virus unless you are protected. The germs are passed on through the air, shopping carts, hand-shakes, door-knobs, and a hundred other things we touch every day.

So, take a few minutes and save yourself a winter full of misery. This years flu shot protects against 14 of the major flu's. Not flu-proof but pretty close :)

Keith

American RSDHope

CRPS - RSD - TOP TEN QUESTIONS , CRPS or RSDS?

2008-11-28T08:27:00.002-05:00

We continue today in our series of some of the top ten questions we get asked at American RSDHope regarding CRPS. Some of you are probably getting a little confused by the terminology, CRPS/RSDS.

I was excited by something I heard the other day at our local CRPS Support group meeting (besides being one of the directors of American RSDHope I am also a member of a local support group down here in Florida). What did I hear? No, not "Keith, you won the lottery, here is your check for $35 Million!". (that was a couple of weeks ago). No, the good news was that of the four new members we had come last week, two were newly diagnosed (within the last year) and they were given a diagnosis of CRPS and the Dr knew right away what they had!

They actually were a little confused when they went on-line to look up information and saw some of the old terminology "RSD". This was good to hear because;

1) It means they are finally starting to use the correct terminology.

2) They were diagnosed quickly and the Dr knew exactly what they had based on the symptoms they presented (discoloration, allodynia (extreme sensitivity to touch), extreme pain, temperature differences in the affected limb, etc.

It is something that is reflected in the emails we have been getting and the discussions taking place on-line lately as well. More and more patients are getting diagnosed more quickly and correctly! And they are being given the new diagnostic term CRPS rather than the old diagnostic term RSDS, which is also good.

This shows that we have been making headway in the national RSD awareness campaign efforts and the educational efforts being undertaken at the medical schools and clinics around the country. It has taken a while I realize to start to notice the change, but at least it is happening.

For those of you who need to be reminded of the DIFFERENCE BETWEEN CRPS AND RSD, check it out :)

Ten years ago it took the average CRPS patient seeing 8 to 10 Doctors before they got a correct diagnosis. I think we need to do a new survey, and I believe we will find out that nowadays that number has been cut in half.

More patients are being treated correctly as well. Many years ago it was common practice to apply ice packs to CRPS patients from the day they walked into a PT center. They were told when they got home to alternate ice and heat all day long for weeks at a time. When they were at physical therapy they were immediately put into ice baths and told this was the way the disease was treated.

After a few months the patient was so advance in their disease the blocks had no chance of working.

( RSD/CRPS AND ICE TREATMENT )

For a long time, decades upon decades, Drs treated CRPS patients with sympathectomies in an effort to "cure" the disease. They froze, cut, burned, etc. nerves in an effort to make the pain go away and it wasn't until only a few years ago that the top Drs and researchers in the country came together and realized that in most cases, sympathectomies were actually making the disease spread and/or worsen rather than curing it! Nearly all Drs have since stopped performing these types of treatments.

As the years have gone on more and more Drs have come to see that the non-invasive treatments are the way to treat this disease. That when you cut or puncture the skin of a CRPS patient you actually run the risk and likelihood of the disease exacerbating.

Some of the exciting treatments today, like the 5-day low-dose ketamine treatment for example, are the new face of the disease and hold great promise for the future. One day they may very well find a cure for us. In the meantime, we would settle for some understanding, and ome pain relief without any treatment that makes it worse :)

Have a great week-end,

Keith

OPIODS - ADDICTION OR DEPENDENCE? WHAT'S THE DIFFERENCE?

2008-11-26T15:37:00.002-05:00

Here is another in our series of TOP QUESTIONS that we get asked here at American RSDHope. Todays question relates to, "What is the difference between Addiction and Tolerance as it relates to taking Opiods for Chronic Pain?

On the website we address this question directly, the article is called, appropriately enough, "WHAT IS THE DIFFERENCE BETWEEN ADDICTION, DEPENDENCE, AND TOLERANCE?"

It is a two-part article compiled by Keith Orsini, one of the Directors of American RSDHope.

The opening of the article states,

"Some medications used to treat pain can be addictive. Addiction is different from physical dependence or tolerance, however. In cases of physical dependence, withdrawal symptoms occur when a substance suddenly is stopped. Tolerance occurs when the initial dose of a substance loses its effectiveness over time. Addiction and physical dependence often occur together."
People who take a class of drugs called opioids for a long period of time may develop tolerance and even physical dependence. This does not mean, however, that a person is addicted. In general, the chance of addiction is very small when narcotics are used under proper medical supervision."

The article goes on to say,

"Most people who take their pain medicine as directed by their doctor do not become addicted, even if they take the medicine for a long time.""

the article continues ...

"In certain parts of the country, the crackdown on illegal use of OxyContin has made it hard for pain patients to get legitimate prescriptions.

"OxyContin was the first prescription medication listed as a drug of concern by the federal Drug Enforcement Agency, which made it a target," says Ronald T. Libby, PhD.

The drug, Libby says, is "monitored by pharmacies and [Perdue] Pharma, the maker of OxyContin. Some physicians, knowing the DEA or sheriff is looking at these scripts, refuse to write prescriptions for fear of prosecution. Doctors can be scammed, and if a patient takes some pills and sells some, the doctor can be guilty of diversion." Libby is the author of a Cato Institute policy report titled "Treating Doctors As Drug Dealers: The DEA's War on Prescription Painkillers" andprofessor of political science and public administration at the University of North Florida in Jacksonville.

"The war on drugs has become a war on legal drugs, on patients who take them, and on doctors who prescribe them," Serkes tells WebMD.

Later, the article discusses everything from the backlash of oxycontin abuse to truths and myths about Oxycontin. Information for the article was pulled from a wide variety of articles and sources and it can be used to help inform and educate your medical professionals about the differences regarding Opiods uses and abuses. Far too often all we hear about are the horror stories and Drs, and the medical boards that govern them, are too quick to lump everyone in the same category, abusers. Leaving those of us in chronic pain to suffer needlessly.

There are excellent pain medications available that when used correctly can be of great use in controlling chronic pain and the majority of chronic pain patients do use them correctly. It is time that the medical community understood that and acted, not re-acted, accordingly.

peace, Keith

PS - You can find more articles regarding Oxycontin, opiods, use, abuse, and other medication in the MEDICATION/MEDICAL ARTICLES SECTION of the AMERICAN RSDHOPE WEBSITE.

AMERICAN RSDHOPE - RSD - CRPS - RIBBON

2008-11-26T15:34:00.002-05:00

If anyone needs a copy of the NATIONAL RSD/CRPS AWARENESS RIBBON, for their website or blog, or myspace page, or facebook page, etc. send an email to keeths@mac.com and let Keith know that you want to help spread awareness of RSD?CRPS.

Help get the word out everyone!!!

Peace, keith orsini, Director, American RSDHope

CRPS RSD BLOG

2008-11-15T10:21:00.001-05:00

Next week we will tackle the topic "WHAT DOES CRPS PAIN FEEL LIKE AND WHY IS MINE DIFFERENT FROM HERS?"

Stay tuned!

CRPS RSD and ICE , Should it be used?

2008-11-15T09:10:00.002-05:00

The normal course of physical therapy following an injury is to use ice to bring down inflammation. They usually recommend something along the lines of ice packs many times per day, for weeks at a time. In quite a few instances they will also use something called Hot/Cold Contrast Therapy. This is where they alternate applying heat and ice.

For the typical pain patient recovering from the typical chronic pain injury these types of therapies can be very beneficial and have been used for many years.

However, (you knew there was going to be a however didn't you?), CRPS is anything but typical. And the application of ice, even in small doses like the use of an ice pack, can have very negative consequences and if used continually for days and weeks the application of ice can actually increase the pain of the disease and accelerate the CRPS through the stages.

How long have we known this? Many years.

Does every physical therapy center out there know about this? If not, they need to and should. The information has been out there, published in articles and medical journals, etc. I will share some of that below so if you know of a Dr or therapist that is still using ice to treat CRPS/RSD patients you can share this with them so they can learn.

Part of the problem comes in that the damage that gets done is not readily apparent. It isn't as if the ice application will make the patient scream out, like the "desensitization therapy" for instance. As a matter of fact in the very beginning it may actually "feel" good and in a weird way it sort of makes sense in your head to apply ice when your affected limb is full of burning pain!

So, let's look at why ice causes short and long term problems for CRPS patients and probable acceleration of the disease itself.

There are two basic areas we will look at and I will try to break it down into layman's terms and also provide the links for those of you who would like more in-depth information on the subject.

1) Some of the symptoms of CRPS, such as pain, discoloration, and spasms, are due to a constriction of the blood vessels. This causes a reduced blood flow to the extremities. many of you have seen the color show your feet/hands, legs/arms have put on where they turn dusky, purple, etc. and have felt the pain of the constriction as if your limb was being strangled, have felt the extreme coldness due to lack of blood flow, etc. These are all partly due to constriction of the blood vessels.

Now when you apply ice to that same affected limb you are constricting, shrinking, those blood vessels and reducing the flow of blood to your limb even further.

2) The second and more important aspect to the application of ice is the damage done to the myelin sheath (fatty tissue insulating the large nerve fibers) . The best explanation I have seen written on it was done by Dr Hooshmand many years ago;

"As the ice freezes the large nerve fibers, causing freeze damage to the myelinated nerves, the patient develops sensory loss and pain due to permanent damage to the large sensory nerve fibers. This aggravates the RSD by adding sensory nerve pain of non-sympathetic origin to the initial thermal sensory pain of sympathetic origin.

As a result, Ice provides total anesthesia and relief of pain for several minute the same way as the hand becomes numb being exposed to snowballs in the winter. However, a few hours after the cessation of ice exposure, the pain recurs with vengeance due to reactive enlargement of blood vessels after the constriction of blood vessels due to exposure to ice.

This phenomenon causes excellent relief of pain with ice treatment followed by not only aggravation of pain, but damage to the nerve fibers adding sympathetic independent pain (SIP) to the original sympathetic mediated pain (SMP).

The end result is aggravation of the RSD and SIP resulting in failure of nerve blocks and then the patient is told, "You do not have RSD anymore because the nerve block did not help you and the phentolamine test proved that you do not have SMP or RSD".

In most RSD patients ice makes the condition worse and can cause denial of diagnosis and treatment for the patient."

The link to the complete article can be found by going to;

CRPS/RSD AND ICE

Also, RSD and ICE THERAPY? HOT/COLD CONTRAST?

You can also read more about SIP (also called IMP or Independently Mediated Pain) and SMP by going to SMP OR IMP? WHAT IS THE DIFFERENCE

In the second ICE article it discusses this;

In stage I, the injured area shows hyperthermia (increased temperature) rather than hypothermia.This is because of a temporary shock to the sympathetic system not being able to preserve heat and to control any heat loss over the skin of the injured area. In a matter of a few weeks, the majority of such patients (over four-fifths of RSD patients) regain the function of the sympathetic system and develop cold skin over the skin surrounding the area of nerve damage. Such patients cannot tolerate ice. If anything, ice aggravates the disease and exaggerates the constriction of the blood vessels and hypothermia (coldness) of the extremity. Even in these patients, the small central area of nerve damage at the area of maximum brunt of the trauma, an area is left with total paralysis of the sympathetic function showing as a pin-point area of hyperthermia on thermography. In these patients which are the majority of RSD patients, ice application should be avoided by all means.

In one-fifth of the cases when hyperthermia persists for a few more weeks, the patient will continue to be intolerant of heat or ice.

In stages II and III, the extremity progressively develops more and more hypothermia due to persistence of the dysfunction of the sympathetic system.

Eventually, towards the end of stage III and beginning of stage IV, in some cases the hyperthermia has a tendency to recur. This phenomenon is in part due to the fact that the patient has had repeated sympathetic ganglion blocks. The repetitive, numerous sympathetic ganglion blocks cause what is called "virtual sympathectomy". This results in gradual hyperthermia of the extremity (warming of the extremity). Even though the extremity becomes warm due to the virtual permanent damage to the sympathetic system, the pain does not get any better. In these patients, again, heat should be avoided.

Regardless of which type of heat intolerance or cold intolerance the patient is dealing with, the so-called heat and cold challenge treatment does no good in RSD patients. It only confuses the diagnosis and treatment and it should be avoided.

In many patients, in stages II and III, in the same extremity, there are islands of sympathetic paralysis, (hyperthermia) and islands of marked hypothermia due to sympathetic nerve irritation. These are the cases that do not respond properly to sympathetic nerve blocks and are classified as SIP (sympathetically independent pain)."

What happens if there are repeated applications of ice and severe damage occurs? The patient can actually accelerate through the stages, so instead of being in stage one for six months where local blocks may give significant relief they are propelled forward into stage two or three where there is no relief at all from blocks. Not only is this discouraging to the patient and sometimes the Doctor, but in many cases the Doctor and/or deciding party (WC, Insurance Company, etc.) may say "If you aren't responding to blocks then you must not have CRPS/RSD". Either not understanding the role that the application that the ice played, not knowing how severely damaging it could be, or not even having a clue that it was a factor at all. The patient is left without a correct diagnosis, many cases without an effective treatment, and now, has damaged nerves as well.

Just one more reason (and there are quite a few) why blocks can work better with some people than others, better in some stages than others, and why we can never compare our pain to other patients pain.

Hopefully, between what I have shared above and the links you will have a much better understanding of why the application of ice is not a good idea for CRPS patients and be able to share the information with your Drs and therapists. Besides the above links there are additional links on the website as well.

Hope this helps!

Peace, Keith

American RSDHope

CRPS - RSD - NEW BLOG BEGINS NEXT WEEK - NOVEMBER 2008

2008-10-27T17:04:00.002-04:00

OK, folks the new era of PAIN IS A FOUR LETTER WORD, will begin November 2008. The new life will be all CRPS/RSD.

We have completed the HBOT cycle and now we will focus on CRPS/RSD, chronic pain issues. I will try to answer questions sent in to American RSDHope's website as well as to my email address and to this blog as well as bring up the typical questions and answers that we have had over the years.

We will start next week, November 2008.

I may drift in and out between then and now posting a few things so don't be surprised.

See you in a bit,

Peace, Keith Orsini

34 + year survivor CRPS, as well as Fibromyalgia

American RSDHope

DID I RECEIVE ANY RELIEF IN THE END???

2008-09-18T06:37:00.002-04:00

Ok, I know I said that was my last post regarding my HBOT treatment but I need to make two more points that are very important; one that I thought I had made but apparently not strong enough, and a second that I neglected to make that I absolutely should have.

1) I have heard from a couple of people, and I believe that Dr Spiegel has as well, who actually said they were sorry that the HBOT didn't work out for me. They thanked me for all of my work on the blog on behalf of other patients but felt badly that I didn't benefit from the treatment.

While i was appreciative of their comments I was quite surprised to say the least by their feeling I didn't benefit from the HBOT! I thought I made it pretty clear that I did very well in the end.

Until I re-read my last blog and realized that I never went back and finished the second part!!!!!

I was writing the last day of the blog in two parts and got interrupted by an issue with my computer and when I came back to it, my first part was gone and I didn't even notice it. I didn't think anything of it until people started writing to me saying they were sorry I didn't do well and Dr Spiegel wrote to me asking what was going on? People were saying the same to him and I had just had an appointment with him were we discussed that I had done pretty well!

Mystery solved! One whole blog entry gone!

So here it is!

If you were reading the blog in the days leading up to the final day you will remember that I had my CRPS originally all over, or "systemic".

You will also remember that over the last month or so of treatment that my CRPS pain was reduced to a only few areas; my eyes (original site), ears, right foot, and my left leg from my knee to my foot. The CRPS was only barely in s a few other areas. This is it!

The allodynia or sensitivity is still in quite a few areas but that is an enormous reduction in pain folks!

After I took a couple of weeks off, due to the hurricane, I came back for a week but we did not notice a improvement so Dr Spiegel felt that I had hit a plateau and he did not see any positive reason for spending any more time or money on more treatments and so we discontinued them as of last week, after 38 treatments in total.

So while I do appreciate the kind and heartfelt words, understand my CRPS pain was definitely reduced by the Hyperbaric Oxygen Therapy.

Now, many of you know that I also deal with Fibromyalgia, sciatica, back issues, migraines, etc. some people find that some of these issues are affected by HBOT.

While it doesn't seem to have affected my other pain issues I can say I have had maybe two migraines in the last two months!

Many patients find greatly improved sleep due to the HBOT, mine didn't seem to have been positively effected by it other than being very tired during treatment, which is very typical. However, I just talked to two patients yesterday who recently began HBOT and they said they have never slept better in their life!

What must be understood when reading something like this blog is a point I have tried to make often; every patient is different. You cannot compare your pain to mine, my results to yours. I present this blog simply as a summary of my experiences with this treatment and as a way of passing along information about the treatment in general, websites, descriptions, etc.

Most CRPS patients don't have all of the medical issues I do so they are typically easier to treat. They are what Drs usually refer to as "clean" patients, meaning they have just one medical problem. "Clean" patients are far easier to treat because it is easier to determine what works on the disease in question and what doesn't.

Think of the patient as a house and the disease as an electrical problem, which is fairly close actually. With a clean patient it is much easier to zero in on the source of the problem, try various things to treat it, determine what is working, what isn't, and fix it. When it is fixed, it is easy to tell, the lights come on, everything works normally.

When you have multiple electrical failures, and a plumbing leak, and a foundation issue all at the same time, trying to fix one thing presents a problem. When you start fixing one it becomes difficult to know if it is fixed becomes so many things are still wrong. Fixing one problem doesn't always show, it can be difficult to tell so finding a contractor to work on this "fixer-uppers" isn't always easy.

Ever see the move "The Money Pit"? That is how my body feels sometimes, lol.

Anyway, so what I addressed in my blog, about how the CRPS was attached to me, how it just wouldn't go away, was the parts that won't leave me. How no matter what treatment I try there is always seems to be a percentage that hangs on. I believe it is because I have had it for so long. Thirty four plus years now. I know a lot, a lot of CRPS patients across the USA and around the world and I don't know that many patients who have had it over 30 years. Why? I don't know. Question for the next blog maybe.

But since this page of the blog disappeared, and all people read was the second page, all they got was " the CRPS just won't go away" basically. So most people apparently felt whatever relief I had gotten went away and all my CRPS came back. Not true.

The relief I received from the HBOT a few weeks ago, I still have.

How long will the relief last? I don't know. I do know that you can get booster treatments down the road and keep your level of relief and maybe even attain more relief the next time.

I also know, from talking to a lot of HBOT patients, that you can actually achieve additional relief weeks after you stop the therapy. Sort of like a bounce affect. Why? I don't know. I will try to find out for you and post it in the CRPS log.

SECOND THING - DANGEROUS LIMB

Now the second thing I wanted to post about and didn't, but should have, is I wanted to talk about the success of the blog and how Dr Spiegel went out on a limb, a dangerous limb, by letting me blog about my experience at his clinic.

When I first talked to Dr Spiegel about doing the blog he talked to some of his fellow HBOT Doctors about it. I think, don't know but think, that they warned him off letting me do it.

You see, HBOT isn't like going on a diet, following an exercise plan, or doing a work-out regime. It isn't something that you typically write about every day that others can follow along and mark your daily progress. With HBOT you may go forward one day and backward the next. One week you may have a great breakthrough and the next, you might hit the wall and want to stop because your pain goes over the top.

If people read that their pain will actually become worse by doing this therapy, the other Drs feared, they wouldn't even want to begin it. If they were thinking of starting HBOT and read how it was up and down, or worse, read that it didn't work on me, they wouldn't ever do it.

This was the biggest fear. Because many people know me, through the RSDHope website, if it didn't work for me, it might turn a lot of people off Hyperbaric Oxygen. And since I had all these other issues, besides RSD/CRPS, there was a good chance it might not work, after all it doesn't work for everyone.

In addition, how would Dr Spiegel control or know what I was writing until after I had written it? What was my ulterior motive in all of this?

So I have enormous respect for Dr Spiegel. Because he trusted me. He understood what I was trying to do. He understood the bigger picture. For him it wasn't just about trying to drum up business for his practice. And while he wanted to help me personally reduce my pain, he understood it was about much more. It was about educating the pain community about Hyperbaric Oxygen Therapy and how it could help many, many patients and not just one.

Even if he was a little nervous at first with the blog, he settled down quickly as he saw how I shared information with everyone about Hyperbaric Oxygen Therapy; how it works, what it does, who it works for/doesn't, the thousands of studies available, links, and more. He, his technician Phil, and Susan Rodriguez (of Rapid Recovery Hyperbarics, one of his colleagues) helped me answer the many, many questions sent in to me by everyone reading the blog.

I was amazed at how the Hyperbaric Community, the Doctors and technicians at the various clinics around the country, talk with each other, share information, ideas, and work together to try to get the best help for patients as they can. It is all about reducing pain. It is an amazing sense of dedication to pain-relief and as someone who deals with pain patients on a regular basis, a joy to experience.

So hopefully all of those who were a little nervous in the beginning have come to see how much we have accomplished. Google now brings up a lot when you search "RSD and hyperbaric", or "CRPS and hyperbaric" and we are adding more information all the time.

It isn't the only treatment out there for CRPS obviously and as we mentioned, it doesn't work for everyone, but it is one more tool in the arsenal and it is non-invasive.

I hope this clarifies things and I do apologize for the confusion!

Peace, Keith

American RSDHope

keeths@mac.com

WE COME TO THE END OF THIS TREATMENT PROGRAM - WHAT HAVE WE LEARNED?

2008-09-14T06:33:00.002-04:00

"If you want to live your whole life free from pain, you must become either a God or else a corpse". -Menander

Todays blog I seem driven by quotes. I have included so many in my talks over the years and have a passel of them (for you young folks under the age of 100, passel means a lot). I don't know why but most of the points I wanted to make in todays blog , every time I thought of what I wanted to say, up popped a quote in my head.

For instance.

When it comes to where we are in my treatment. we have reached a plateau. My pain, what is left of the CRPS portion, doesn't seem to want to go away. It apparently has grown too attached to me to leave.

Am I shocked? Not really. When I had my low-dose ketamine treatments (2003 and 2007) even though I got into almost complete remission, about 85 to 90%, it never completely went away. I have had this disease for over 34 years now and it is full body. It has had a long time to sink its claws deep into every crack and crevice in every system, cell, and fiber of me.

Am I disappointed? Absolutely. Every time I try a new treatment of medication I do so with the hope of being free of this monster.

Will it set me back? Let me put it this way ...

"Retreat, hell! We're just advancing in another direction."--Oliver Prince Smith

After all, we made great progress with the Hyperbaric treatment. Thanks to Dr Spiegel my CRPs pain is down significantly. Mainly I have the CRPS pain now in my left leg from my knee down to my foot, in my right foot, in my eyes and ears, and then of course the allodynia issue. But, if you had seen my pain chart when we started you would be amazed. My darkened areas, those places where my CRPS was, was pretty much everywhere; both legs all the way, both arms and hands, eyes, ears, face, and of course back, neck, and a few other places.

So compare then to now!

I have also cut my meds down some as well. That in itself is a good thing as all of you know. I am so sick of taking medication. I have been on them for so many years now and even though I have regular tests on my liver and have blood-work done, I do worry about the effects of all of that. Not to mention I am just, like many of you, a little over the side effects of some of these things; the tiredness, the sluggishness, the , sleep problems, and, well, other issues.

But having said that ...

One of my favorite quote and one that fairly well describes me and well, I guess my stubbornness (I am a Taurus after all) is this quote attributed to Calvin Coolidge;

"Nothing in the world will take the place of persistence. Talent will not; nothing is more common than the unsuccessful person with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent."

So, like so many of you I forge ahead because I am too stubborn to turn around. I once was told that I was like a rhino. That they have tough skin and can't turn around, they can only charge forward, can't go sideways, something like that. I hope when they said "tough skin" they meant I was tough and not that my skin looks like a rhino's! Either way, that is what I am going with.

George Patton once said; "Success is how high you bounce when you hit bottom."

Some of us are fluffier than others and probably bounce a little more. (this is evidenced by anyone who has watched WIPEOUT on Fox-TV). A silly show to be sure but a hoot to watch.

Of course, there is always the alternate view as espoused by Homer in the Odyssey, "The lot of man - to suffer and die".

Cheery guy. Unfortunately over the years I have met quite a few patients who feel this way. This disease has hit them, it isn't fair, their life is over; their Doctor told them they are the worst case he has ever seen so they are sure it is so and their live is surely over and they will never get better. They can no longer do what they did, are not who they once were, don't want to hear what they can be or what they might do in the future because they become so mired in what once was.

At this point it isn't about the physical pain, it is about dealing with the emotional pain and the damage it has done to your psyche.

So often patients focus on the past, they focus on what they have lost.

"Never say of anything I have lost it, only say that I have given it back."--Epictetus

"We must embrace pain and burn it as fuel for our journey."--Kenji Miyazawa

I realize it isn't easy to focus on the future, to accept what has happened and accept the new reality. But until we do, we cannot move forward. Until we can do, we cannot hope to begin healing.

When it comes to chronic pain, especially long-term chronic pain, we may have to give up some of our past in order to gain our future. But if we don't we will find ourselves mired in the past and unable to move forward.

"Giving up doesn't always mean you are weak. Sometimes it means that you are strong enough to let go."--Anonymous

Do more than just accept where you are. Move forward. Seek out information, find ways to decrease your pain, find ways to help others, seek out others and together form groups to help others who have to daily deal with chronic pain.

"Many things which cannot be overcome when they are together, yield themselves up when taken little by little."--Plutarch

It is easy to sit on the sidelines, to let someone else do the work, form the group, gather the people together, form fundraisers, educate the medical community and public, and inform the school systems about our disease. It is much harder to participate, to be involved. To actually lead. Don't think for a minute that those who step into these leadership roles do so because their pain is less. They do it because they are driven to make a difference.

"Conditions are never just right. People who delay action until all factors are favorable do nothing."--William Feather

The choice you get to make every day is what you will do today. Your pain will be there anyway, whether you sit and do nothing or whether you reach out and make a difference. You decide. It could make all the difference for you, and for many others.

In the coming weeks I am going to begin a new blog, a new version of PAIN IS A FOUR LETTER WORD. It will be one for CRPS/RSD. Because so many people have responded positively to the information contained in tis blog when I discussed CRPS, I decided the need was there for one where I could pass along information, share new websites, updates from the website, answer questions sent in to us on the site, etc.

I will put an announcement on the website in the WHAT'S NEW section about it so keep an eye out for it!

I want to thank Dr Spiegel of National Hyperbaric Oxygen Therapy for all his help in answering questions posed here by patients, and myself, in putting this blog together. I also want to thank Susan Rodrguez of Rapid Recovery Hyperbarics for her help along the way.

I also want to thank everyone who wrote in, sending in their questions and comments along the way. They helped move the discussion along and provide some interesting questions and answers!

So in closing let me leave you with this thought from Pakenham Beatty;

"By your own soul, learn to live. If some men thwart you, take no heed. If some men hate you, have no care. Sing your song. Dream your dream. Hope your hope and pray your prayer."

Peace, Keith Orsini

American RSDHope

www.RSDHope.org

CRPS, RSDS, WHICH IS IT?

2008-09-10T16:48:00.003-04:00

so, as another day passes.

What do I feel?

It's always something.

Apparently I pulled a muscle in my left side a couple of weeks ago. For any of you guys who played football it feels like I was on the bottom of a pile and I got sucker-punched in the kidneys a few times after the whistle was blown.

It only hurts when I move.

or breath.

Other than that, It isn't a problem.

When you have CRPS, every little injury, every little pain, gets exaggerated. Because of your everyday pain, the "normal" pain of your CRPS that you deal with 24/7, when you get an additional source of pain, however small, it gets exaggerated tenfold.

Ok. I have a question for all you patients out there with CRPS/RSDS. Now, if you have kept up with the medical information in the last few years know that the definitions in our community have changed. (see CRPS or RSDS, WHICH IS IT? )

What used to be called Reflex Sympathetic Dystrophy Syndrome, RSDS, is now known as Complex Regional Pain Syndrome, CRPS, Type I.

What used to be known as Causalgia is now known as CRPS Type II.

So slowly over the last decade the medical community has truly made a concerted effort to make that changeover on medical charts and forms to the CRPS terminology and away from the RSD term. It is a slow process to be sure and the medical professionals who see the disease less often are more likely to use the old "RSD" rather than "CRPS". Understandable.

The problem though is that patients, especially the newer ones, are getting extremely confused. Quite a few are getting multiple diagnoses; one with RSD and another with CRPS. They then write to us at American RSDHope (and probably the folks at the RSDSA) and ask us which is they have? Or they write to us and say, "No, I don't have RSD, I have CRPS", or vice versa.

Now of course it is possible to have CRPS and not have RSD. Those people are the ones who have CRPS Type II.

But nearly every time people are told this it is because they have gotten conflicting opinions on the name but in the end, the same diagnosis. It leads to a lot of confusion for the patient.

So here is my question for all of you.

How many of you has this happened to? How many of you were unaware of the name change, here many years later? Any medical professionals out there unaware of it? (anonymity promised, I just am curious)

So if you would like to send in your comments here that is fine or email them to keeths@mac.com

thanks, I appreciate it.

I hope you have a great night,

Keith

WHY DON'T ALL INJURIES END UP IN CRPS?

2008-09-09T17:17:00.002-04:00

Does anyone else watch America's Funniest Videos? Do you see these people doing the most insane things and wonder "How has the human race survived this long?, How can people actually do these stupid things and still be alive?"

But most importantly, and the question I ask myself ten times a show, HOW DO THESE PEOPLE NOT END UP WITH CRPS????

I am not one of those people who sits and says "Oh woe is me ... why me and not that person", things like that. But my gosh, people fall off buildings, get hit by cars, have porches fall on them, and get run over by mini-bikes but then get up and walk, or sometimes stumble, away and are just fine.

Yet I hear story after story of CRPS patients who get it from everything ranging from stumbling their toe to spraining their ankle. Yes, there are much more serious injuries that can cause it; bullet and knife wounds, back injuries, etc., but many times our disease is caused by fairly simple injuries.

So, the question remains.

Am I the only one who watches this show and wonders this?

Or wait, should the question be, Am I the only one who watches this show?

hey, I admit it. I like the show. It makes me laugh. I am constantly amazed at how stupid people can be. I am not a big fan of the baby stuff but that is probably because I don't have kids.

Anyway, this is pretty far off topic. I just wondered.

So today I had my second day back at HBOT after my break. It went well. My body seemed to enjoy the oxygen boost of the last two days. My pain level is about what it was when I left just over two weeks ago. In other words, my relief held firm. I had a pain spike during the hurricane week but then it settled back down to the pre-storm level.

I am at a pain level of about a 7 but that includes all of my pain issues; CRPS, failed back syndrome, neuropathy, fibromyalgia, etc. My CRPS seems to be staying in my left knee to foot, my right foot, my eyes, ears, and that seems to be it right now. That is where it was when I left.

My allodynia is in a few more areas, but it was before we stopped as well.

I have some questions for everyone who has been through this treatment, who has had 30 or more treatments. Did it affect your allodynia? The sensitivity to touch, sound, vibration?

Did it affect your memory issues? Concentration problems?

If you have any input, please send it to keeths@mac.com

Thanks guys!

Keith

ONCE MORE INTO THE BREACH DEAR FRIENDS

2008-09-07T17:15:00.002-04:00

IMMMMMM BACCCCKKKKKK!

Did you miss me?

Just a little bit?

C'mon, you can admit it.

the bad jokes, the dry sense of humor, the information thrown in with all of that?

Ok, maybe not too much :)

After taking some time off to deal with hurricanes and to see what would happen if I took a couple of weeks off I will be going back to HBO Therapy tomorrow, Monday the 8th of September.

How many treatments have I had now? Just under 7 weeks; 33 treatments altogether. Most of my treatments have lasted 90 minutes each, a few were 60 minutes.

Many people have written to me asking what my protocol has been. I must stress that the exact protocol that Dr Spiegel and I put together for me was something he had never tried before. So it would not be prudent for me to share the exact everyday protocol because it isn't likely to be duplicated by whomever does your treatment.

I will be back doing my daily blog beginning tomorrow, Monday. I hope you will join me.

Please send in any questions you have regarding the procedure, HBO therapy, the treatment overall, etc. You can send them to keeths@mac.com or leave a comment here at the blog.

If you have questions on CRPS I would be happy to try and answer them as well.

Wish me continued luck and pray for me.

Peace, Keith

LET ME PUT YOU ON HOLD FOR A MINUTE ...

2008-08-20T10:32:00.003-04:00

Well it has been an interesting few days here in Florida and it should be an interesting week.

For most of us here on the west coast Hurricane Fay turned into Tropical Storm Faux. In other parts of Florida, that originally never expected to see the storm are now bracing for heavy winds and rain, some already received up to 12 inches of rain from it. Weather is a strange thing.

We live on the coast here and quite a few people south us were put on voluntary evacuation, unless of course you live in a mobile home then you were told to RUN! RUN AWAY! But better to err on the side of caution with these things these days.

Seriously though, everyone else sort of prepared for a storm but mostly just prepared for a very heavy summer thunderstorm. I guess they are just used to such things and aren't phased by them anymore. Much the same way that we in the north had gotten blase' about Nor'easters; those blazing blizzards of snowstorms that rage in the winter. Stock up on food, water, and then have simply go about your business as normal until something serious happens while watching the newly arrived scramble around buying everything in the stores that isn't named down, including nails.

So, what did we end up with? So far all we got in our area, just north of Tampa, was a ten minute rain shower. The way this weird storm has run who knows where it is going but it appears to have gone away north; possibly coming back onto land around Jacksonville and maybe crossing the state and heading into the Gulf or shooting into GA/AL/MS .

But while we didn't get the heavy rain/winds of a hurricane we did get the ups and downs of the barometric pressure changes; which for me brings big changes in my pain picture. That is not unusual for CRPS and/or Fibromyalgia patients nor people with back problems. For me that is a trifecta!

Since it looks like we will be dealing with this storm system for another few days at least and we have been dealing with it for the last two, I knew that my pain levels would be all over the place as well, mostly very high. Between the fibromyalgia, the failed back syndrome, the sciatica, and what is left of the CRPS, as well as a few other things, I knew that my pain would more than likely be extremely high due to these barometric changes and strong weather patterns, with or without an actual hurricane.

Why am I sharing this with you? Especially since most of you are probably saying out loud as you read this, "Big deal Keith, me too!"

Well first of all, stop talking to the computer. Second, the reason I am sharing this is because after discussing this with Doctor Spiegel and realizing that because my pain would be up and down, mostly up, so we would not be able to accurately track my Hyperbaric Therapy this week, we decided instead of taking a couple of weeks off next after this week we would take this week and next week off and then go right back in.

Did you follow all of that?

No HBOT this week. None next week. I will be back in HBO Therapy the first week of September.

To date I have had just under 7 weeks of HBOT, 34 sessions altogether.

It will be very interesting to see how these weeks off go. Many patients report a decrease in pain when they take a break. That is what I am planning on! Plan your work, work your plan!

There was a quote, on a show I particularly like, that really stuck with me. It reminded me of how some of us deal with chronic pain and/or how we are told to deal with it.

"Sometimes you can't control the outcome. Sometimes you have to look at the reality in front of you and accept it"

I would add "accept it and move forward".

So I am putting the treatment on hold for two weeks. But I don't expect the healing to be put on hold :)

Peace, Keith

A MIGHTY WIND

2008-08-17T18:32:00.002-04:00

Ah, the joys of living in Florida in the summer. Tropical Storm Fay, soon to be Hurricane Fay, is bearing down on us here on the west coast of Florida. As I write this it is crossing over Cuba and heading for the Florida Keys. We went to the store today to pick up the typical hurricane supplies; water, batteries, canned food, alcohol, sandbags, daiquiri mix, flashlights, etc. It was quite busy. They are talking about some evacuations for the counties below us but it is still too early to know. It may wind up going further into the gulf, or turn inland, just too soon to know.

If it does become a problem and we get flooding we may lose power here and I won't be doing the blog for a few days so I thought I should come on tonight and post a quick note. We do get flooded very easily where we live here but we but some of those foam noodles and a couple of the inflatable floats (the kid with the pillows and drink holders of course) so we should be fine. We even got a little inner tube and some water wings for our cat.

Ah, you may laugh but when I win $100,000 on America's Funniest Home Video's who will be laughing then huh? Ok, hopefully it will still be you. But I digress.

Wish us luck guys and hopefully I will be able to catch you up on whatever treatments I am able to get to this week! Saying a prayer wouldn't hurt either :)

In closing, something to think about ...

“If trees could scream, would we be so cavalier about cutting them down? We might, if they screamed all the time, for no good reason.”

... Jack Handey (a brilliant man)

Peace, Keith

PS _ yes, in response to one of the recent comments left on my blog, I do want to thank Susan Rodriguez of Rapid Recovery Hyperbarics for her help in my dealing with the HBOT. She has been a great help. I have made mention of her website many times in my blog and given out her link quite a few times as well. if you haven't been there, it is ell worth a visit!

HBOT - Moving Forward

2008-08-15T19:16:00.002-04:00

This will be my fifth blog post this week...

There are three types of people in the world.

Those who can count ...

and those who can't.

My father always told me the two most important things that have guided me throughout my entire life.

1) Never tell everyone everything that you know.

and that brings me to another subject. In my last post I talked about how great I was doing, how low my pain level was and how great my HBOT was going. I neglected to mention where I have been getting my Hyperbaric Therapy from, for those who are new to the blog and didn't read the first couple of weeks entries.

I have been getting treated at NATIONAL HYPERBARIC OXYGEN THERAPY in Palm Harbor, Florida by Doctor Allan Spiegel and his technician Phil. His entire staff has been so wonderful every time I go in there, they are always so cheerful and friendly. That makes a big difference on those days when your pain is bad let me tell you.

So today is Friday and my seventh week has ended. Next week is one of those weeks where we had a choice. We could either take a week or two off, which many patients do, or we could push through five more days to complete eight weeks then take a few weeks off and see where we stand. The hope is that at the end of that time my CRPS will be in remission and no further treatment will be needed.

That would be extremely nice to have happen. I have a lot of catching up to do!

Oh yeah, it would be nice to be out of pain too ;-D

But seriously, it takes a lot out of you when you under-go this therapy. You are tired a lot, especially after the treatment and in the evening. And in the morning. And at night. Other than that ....

Definitely the vitamins help and I was on some before, but added more during.

This was a big week for me, especially the first part of the week. I saw great progress in my pain-relief over last week-end and the first couple of days this week. I am hopeful that trend continues next week.

I know quite a few people who have been following this blog have either started their HBOT and/or are getting ready to. I appreciate your sharing your comments and experiences with me. Please keep me informed as to your progress as you go along even after I this blog is finished.

Because of well this blog has been received I am contemplating doing a once-per-week CRPS blog that discusses some of the latest items related to our disease, articles, questions patients and loved ones submit, things like that.

What do you guys think?

One other really wonderful side effect of the HBOT is that I haven't had a migraine in weeks!

Migraine Cure

A man goes to the doctor with a long history of migraine headaches. When the doctor does his history and physical, he discovers that his poor patient has had practically every therapy known to man for his migraines and STILL no improvement.

"Listen," says the Doc, "I have migraines too, and the advice I'm going to give you isn't really anything I learned in medical school, but it's advice that I've gotten from my own experience. When I have a migraine, I go home, get in a nice hot bathtub, and soak for a while. Then I have my wife sponge me off with the hottest water I can stand, especially around the forehead. This helps a little. Then I get out of the tub, take her into the bedroom, and even if my head is killing me, I force myself to have sex with her. Almost always, the headache is immediately gone. Now, give it a try, and come back and see me in six weeks."

Six weeks later, the patient returns with a big grin.

"Doc! I took your advice and it works! It REALLY WORKS! I've had migraines for 17 years and this is the FIRST time anyone has ever helped me!"

"Well," says the physician, "I'm glad I could help."

"By the way, Doc," the patient adds, "you have a REALLY nice house.

I couldn't help that, sorry :)

But, no, that wasn't me talking to my Doctor.

Also, my muscle spasms, that were a near constant companion in the evening and through the night helped only by taking baclofen, have been reduced to almost nothing. Before my treatments, you could actually sit there and watch the muscles in my legs bouncing around, doing the rolling spasms (I know many of you are familiar with these horrible things), and getting so painful they woke me up. No more.

Some people have asked how in the world I have managed to deal with this disease for more than three decades. My short answer is always the same ... I didn't like the alternative! My longer answer lies in a talk I gave at the last national CRPS/Pain conference we held in Maine.

Those of you who know me, have watched any of my DVD's, or seen me speak at a conference, have probably learned how important I feel that humor and positive thinking are in the healing process.

I don't simply mean thinking "I am not in pain, I am positive I am not in pain", or ignoring your pain or anything like that. Bringing the power of positive thinking into every aspect of your life, changing how you view your life IN SPITE OF YOUR PAIN is not easy but is absolutely necessary if you are going to move forward in life; in my opinion. That was one of the major topics in my last DVD (copies are available on the RSDHope website for very little do-re-mi) .

We set the DVD's up so they could each be shown separately at a local meeting and discussions could occur afterwards. It is especially good in areas where it is more difficult to get speakers. Just a thought!

In closing today, I will leave you with this thought. You figure it out.

Your brain is a masterpiece, divided into two parts, left and right. In the left nothing is right and in the right nothing is left.

and for those of you in Florida remember, as Yogi Berra once said, "It ain't the heat, it's the humility"

peace, Keith

HBOT - HUGE BREAKTHROUGH!

2008-08-12T18:25:00.002-04:00

Well, when my HBOT journey began a little over 6 weeks ago my CRPS was full body. For you newbies that means it was head to toenail and everywhere in between! Nearly every inch of my body. There were a few areas on my chest that didn't burn with the pain of CRPS, very small areas, and while my cheeks (facial) did have allodynia (extreme sensitivity to touch) they didn't burn. But other than that, pretty much everywhere else I was a mass of burning nerve endings with allodynia all over.

My CRPS began in 1974 when I was hit in the face with a baseball. It fractured my cheekbones and broke my nose. I was 14. this started my CRPS in the eyes. It stayed in the eyes until 1985. Then in 1985 I was in a severe automobile accident and, among other injuries, I broke my back. That led to my CRPS spreading full body over the course of the next year or two. It got extremely severe within a year or two of that.

That is basically what I have dealt with since then.

Ok, we are up to speed.

I will assume that those of you reading this have been following my blog, waiting with baited breath for each new installment! ha ha , ok, maybe not. But I hope you have found them helpful. I missed yesterday's as my uplink was down. Sort of a downlink.

Last Sunday, on the third, I had one of the worst days "pain-wise" I have had in years. It continued on Monday to such a degree that I did not even go to my HBOT session. I felt like I had been hit by a truck, my pain went through the roof, my burning was horrific, and the allodynia was such that people ten feet away simply breathing were causing me pain! other than that ....

Because I had been forewarned that I would hit some walls along the way during this treatment, and had already hit a few of them, I was sort of prepared. Still, it was rough. But on Tuesday I knew I had to get right back in the chamber if I was going to beat this beast back down. It took me until Friday but eventually it was back in its' cage.

this past weekend I too a positive turn, a big one. I gained back the ground I had lost and then some. if you use % to describe how much of my body was covered in pain, then last Sunday it was back to about 99%. As of this past Sunday it was back down to about 40%.

On Monday, after the chamber I was doing even better. As of this afternoon (Tuesday) after I left the chamber my pain is down to about 15% !!!!!!! The main parts that are still affected are; the eyes (original CRPS site); the left leg, from the knee to the foot; and a little bit in the right foot. That is it!

The allodynia is greatly reduced as well. It used to be everywhere, even in my mouth, my groin, my ears, well, everywhere. Now it is mainly in my left leg, from the knee through the foot; the right foot; and a little in the hands.

Isn't that great news!

Such a huge change! i think there will be even more significant changes coming this week. I had something happen in the chamber today that was pretty kewl but it only lasted fifteen minutes. I am hoping it will happen again tomorrow and the relief will last much longer! I will say more on that tomorrow, hopefully!

Peace, Keith

BTW, several people asked how the pool party went for the Tampa Bay CRPS group went and how the new Central Florida CRPS Society is coming along.

The Pool party was a lot of fun. It rained for the first part of it but we had reserved the recreation room which had a full kitchen, big screen TV, pool table, etc. so we had fun down there until we could get out and start grilling! It was great fellowship and we got to know new people.

The Central Florida CRPS Society is going strong. Lots of new people getting involved and it should be a very strong group.

If you need information on either group, let me know.

keeths@mac.com

HBOT - DEALING WITH THE ROUGH DAYS

2008-08-10T15:11:00.003-04:00

One of my new HBOT friends wrote to me recently about how her HBOT journey was going. She is in one of those rough periods, when the pain actually gets worse before it gets better. She said it has helped a great deal being able to read the blog because she knew ahead of time that these rough patches were going to occur, if she hadn't know that she probably would have quit.

Her HBO Tech, at the clinic, told her that it was the reason why so many people quit; they just aren't mentally prepared for their pain to worsen before it improves. It is a story that is repeated at clinics all over the country, a frustrating one because these technicians and Drs know that if these patients would only stick with it, work through those difficult spots, get through the wall especially, they would see remarkable improvement. They know because they have seen it happen time and again. It just could happen so much more often than it does.

And sometimes a patient sees their greatest improvement after they finish their sessions! It could be as long as weeks after they are done. Why? It is an ongoing process, this remarkable healing of the body. It is not something that happens overnight, or like the flipping of a light-switch.

Hopefully I have helped to prepare some of you for these tough times so more of you can achieve success; either partial or complete. Any relief is a help.

I am not too worried about this new friend of mine. Why? Because she is a fighter like me. Let me share with you what she wrote;

but I am strong - we RSDer's (are) the strongest people around . We get knocked down wipe ourselves off and get back in game over and over and over again -Most people have that challenge once or twice in their lifetimes. We sometimes have it 10 times in a day;)

So true. When you get right down to it, we deal every day with what is classified as the most painful form of chronic pain that exists today, CRPS. On the McGILL Pain Index nothing else is even close. We have to cope with occasional flares that produce even greater pain. If there is anyone better equipped to handle increased pain, I guess it would be us! Especially if it means the possibility of eventually reducing that pain.

That same friend wrote something that quite a few others had written in one way or another that I wanted to share because I wanted some of the Drs and clinicians who are following this to read it. Some of them were very nervous and/or against the idea of my doing a blog about HBOT, documenting my journey, for several reasons. Some of them I could understand.

1) They were concerned that people would think that if it didn't work for me that it wouldn't work for them. Hopefully I have made it clear that every case is different and especially so in my case where I have had CRPS for more than three decades and mine is full body. Entrenched is a perfect word to describe my CRPS!

2) That people would have a difficult time understanding in a blog the complexities of the HBOT process. I hope I have dispelled that by taking a lot of time to explain the process in detail, how it works, why it works, information on the various types of chambers, sharing all manner of websites and information, etc.

3) That when people heard about THE WALL, it might scare them away. Hopefully the contrary is true, that by informing people of what lies ahead of them they re better prepared for it and are then able to mentally work through it so they can stick with the therapy instead of giving up on it.

Having said that, here is what she wrote today.

There is not enough written about the difficulty of this process . Your BLOG IS DOING A GREAT SERVICE ON THAT END. People think they go in- they do the treatments and they come out in remission or at least a whole lot better. No one talks about this CRAZY journey.

So I hopefully have helped a few people better understand it :)

Someone wrote about whether or not Fibromyalgia would be helped by HBOT. There are many websites that speak to this, you can find them linked on our HBOT SECTION on the American RSDHope website, but you can also find a quick and easy answer by going to HAELEN HYPERBARICS.

Next week, is week seven! Only two weeks to go, 10 treatments. That is the plan!

Remission or bust! well, or really really close.

See you tomorrow, go hug your significant other, caregiver, or maybe a really cute stranger.

Keith

HYPERBARIC OXYGEN -

2008-08-08T16:54:00.002-04:00

I want to make one thing perfectly clear ...

I am not a croo ..

on no, wait.

I did not sleep with that wom ...

nope, that's not it either.

Oh yeah.

I wanted to say that I hope there is no confusion about my purpose with this blog. I talked to someone today who felt that it was only about one person's journey with HBOT. That many people who read this would probably not understand the overall message that I was trying to convey. I was surprised because I thought I had come across with my goals fairly well.

I hope that in my writings I have shared much more than that.

My purposes in doing the blog were many. Among them;

1) Open up the world of Hyperbaric Oxygen Therapy to the CRPS Community.

2) Share as much of the vast amount of information available on HBOT as I could; articles, studies, websites, clinics, etc. as I went through the weeks of therapy.

3) Try to answer questions patients/loved ones had who were considering HBOT, were going through HBOT, or maybe had gone through it in the past.

4) Explain from a first-person viewpoint what it was like to experience the therapy, what the side effects were, what to expect along the way, what if any supplements were recommended to take to enhance its' effectiveness, what a dive was like, how to prepare for the days/weeks when the going got tough, etc.

If I only succeeded in making it appear as "one-person's experience" and nothing else, then I have failed. If I have not gotten across the point that every patient's treatment may be different, every experience, while following similar patterns, many be different, then I have failed. If I did not get across the point that my own personal treatment must be looked upon in the aggregate rather than what each individual day was like, then I have failed.

I hope I have not. I hope I have been able to move the discussion forward. Time will judge :)

There are some other tidbits I wanted to share in response to questions I have received in the past few days.

HBO therapy affects the body in other ways. For example, it enhances the function of white blood cells, which fight infection. This is important because increasing the efficiency of white blood cells through the use of HBO therapy has a positive effect on the immune system. Also, HBO therapy has a positive effect on peripheral blood vessels and causes the formation of new capillaries, which are tiny, thin-walled blood vessels. Such formations effectively increase blood flow to the body's extremities (your hands and feet)

The above is from CHICO HYPERBARIC website.

I have talked a lot about what the monoplace (single person) chambers are like, because that is what my personal experience is. I have also tried to throw in some information on the other types as well. But while looking for some information in response to a question I received, I found this great description.

How Is Hyperbaric Oxygen Therapy Administered ?

When a patient enters the hyperbaric chamber they sit in a chair for the duration of the treatment. If a patient is unable to sit in a chair then a gurney can be used. When the chamber door is closed compression takes place with standard air, or the air we normally breathe. It takes 10 to 15 minutes to reach the desired pressure, equivalent to a depth of up to 60 feet of sea water. Once the desired pressure is reached a large, see-through hood is placed over the patient's head and 100 percent oxygen begins to flow into the hood. The patient breathes 100 percent oxygen for the prescribed amount of time, usually 60 to 90 minutes depending on the condition being treated. During treatment the patient can watch TV, read a book or just relax.

After the prescribed amount of time has elapsed the flow of 100 percent oxygen is stopped and the hood is removed. The chamber is decompressed, or returned to the same pressure that exists outside the chamber, which takes 10 to 15 minutes. The patient then leaves the treatment environment. If a patient is receiving two treatments a day the second treatment follows the first after a 3 to 4 hour break outside the chamber.

A patient receiving one treatment per day will spend about two hours at the treatment facility in either the morning or afternoon. A patient receiving two treatments per day will spend about four hours per day at the facility. The Chico Hyperbaric Center offers treatments Monday through Friday; treatments are not normally scheduled on weekends.

Someone asked me about HBO's affects on the vasoconstriction problems of CRPS. This is an excellent question and the answer I got, when I first looked into this, is what gave me my "lightbulb moment". It is what first opened my eyes to the possibilities and made me seriously look into the existing research.

At sea level, our lungs absorb a certain amount of oxygen molecules from the air. When descending to lower altitudes (below sea level), the pressure is greater (above 1ATA) and now the lungs more easily absorb the compressed oxygen molecules in the air. ... During a hyperbaric “dive” the fluids and tissues of the body receive an infusion of readily available oxygen. In fact, even cells and areas of the body with limited circulation become saturated in oxygen. The effect is an uptake of oxygen in the blood, plasma cerebral-spinal fluids, and tissues. In addition, the vaso-constrictive nature of hyperbaric therapy has an added effect of reducing inflammation and edema. (From Wisconsin Hyperbarics)

So let me close with this thought;

"Hyperbaric oxygen adhering to all the gas laws of physics delivers free molecular oxygen to the cells for immediate metabolic use without energy exchange, even with compromised circulation" -- Edward Teller PhD (Father of the Hydrogen Bomb)

The late Dr. Edward Teller (1908-2004), one of the great geniuses of our century, served as Director Emeritus of the Board of Advisors of the Ocean Hyperbaric Neurologic Center.

Peace, Keith

CRPS / RSD TREATED WITH HYPERBARIC OXYGEN

2008-08-06T17:21:00.004-04:00

Sometimes a pickle ... is just a pickle ...

Many of us have gone to the Doctor and tried to explain to him, or her, exactly where our pain is. Sometimes there is an simple explanation ...

A man goes to the doctor and says to the doctor:
"It hurts when I press here" (pressing his side)
"And when I press here" (pressing the other side)
"And here" (his leg)
"And here, here and here" (his other leg, and both arms)

So the doctor examined him all over and finally discovered what was wrong...

"You've got a broken finger!

and then there is our disease.

I hurt my foot. Now my ankle hurts too. It burns. Now I think my other foot is burning too. And it feels like my bones are being crushed, and it my foot is freezing all the time. yeah, I know I said it burns, but it is freezing too. Oh yeah, I forgot things a lot. And I have trouble concentrating. And my foot and leg keep having muscle spasms and these little red dots are appearing. Sometimes it feels like I have these creepy crawlies all over my foot and leg. And it seems swollen. Oh yeah, every time a breeze blows over it I scream. Did I mention that? And loud noises make it worse too. Am I depressed? Wouldn't you be?

So, what is it?

Now do you see why it is so hard for Drs to diagnose?

At the same time, patients who educate themselves about CRPS, and learn about these symptoms, see how obvious the set of symptoms are and think, "If someone came to me with these symptoms I would be able to spot CRPS right away!" Once you know what a kumquat looks like, they are easy to spot.

For more information on the SYMPTOMS OF CRPS, drop by the American RSDHope website.

Someone asked about the various MEDICATIONS USED TO TREAT CRPS, we have a section on the website for that.

My latest flare has slowly quieted down, especially after todays HBO session. Today we did the shallower depth for 90 minutes, yesterday we went to the deeper depth (45 feet) for 90 minutes.

Someone asked what the typical treatment depth was for CRPS. That is 45 feet, or 2.4 atm's.

Something interesting I have noticed. I feel so rejuvenated after I get out of the chamber, even though i am tired. It is such a positive feeling. Hard to explain. Maybe someone else who has been through it or is going through it can explain it better than I.

I got an email from "Janice" and she shared - "I am on my 5th treatment and I am already seeng a big difference.My stiff dystonic hands are starting to move much more freely and my dystonic feet /toes do not look at attention(my terminology). They seem more relaxed and they do not hurt at all. My calves are not permanently cold YAY!"

That is fantastic! Thanks for sharing Janice!

She also mentioned that her clinic does not take patients to the 2.4 atm depth, not for CRPS or for any disease. I was a little surprised at that since most clinics I have talked with, and patients, it seems that that is the standard treatment depth for CRPS patients. But every clinic is entitled to treat their own way :)

She seems to be having success right? Hopefully Janice will keep us informed as she approaches remission.

Short blog today. Time for dinner and then a Red Sox game. I am taking the night off!

Tune in tomorrow :)

Peace, Keith

PS - Payback is a , well, a pain in the butt.

The CEO of a large HMO dies and goes to heaven. St. Peter shows him to a lovely villa, wonderful music, great views, full staff of servants, gourmet meals, etc.

The CEO says, "This is terrific!"

"Don't get too comfortable," says St. Peter. "You're only approved for a three-day stay."

HYPERBARIC OXYGEN AND CRPS -- If a CRPS Patient screams in the woods, and no one is around to hear it, does he still make a sound???

2008-08-05T18:40:00.004-04:00

There's a little black spot on the sun today
It's the same old thing as yesterday
There's a black hat caught in a high tree top
There's a flag-pole rag and the wind won't stop

I have stood here before inside the pouring rain
With the world turning circles running 'round my brain
I guess I'm always hoping that you'll end this reign
But it's my destiny to be the king of pain

---- Music and lyrics by Sting and the Police - "King Of Pain"

I talked to a 13 year old girl recently who has been dealing with CRPS pain for over a year. She has it in her foot and leg. Her whole life has been turned upside down due to this disease. She had to leave school, stop cheerleading, most of her friends have stopped calling and stopping by, and she spends every day in agonizing pain.

She asked me, will she ever get better? Will there ever come a time when she isn't in pain?

None of the Doctors her parents have brought her to have helped. Nothing they have done has helped; blocks, medications, EMG's, etc. Some of these things actually made her worse, especially the EMG (as it will most often do for CRPS patients).

As a matter of fact, her Doctors have told her parents that because nothing has helped her she probably doesn't really have anything medically wrong with her; that her problems are psychological in origin. Oh sure he says, she has spasms, her skins changes color, and she is exhibiting signs of pain. But he insists that she is causing these changes, causing these symptoms, to occur and if she wanted to she could stop them just as easily. She "must be doing it for attention", or there are "problems in the home", or a few other things he tossed out.

I remember when she first wrote to me, shortly after she started having symptoms. Her case escalated in the classic way and her symptoms are classic.

The biggest problem now comes in that her parents are believing the Doctor instead of their daughter. And the months tick by without her getting the help she desperately needs. She has educated herself via the internet, going to our site and a couple of others and learning all she can about the true facts of this disease; description, signs, symptoms, stages, and so much more that is available and tried to share some of it with her Dr; to no avail.

She feels confused, alone, and doesn't know where to turn. She is a member of a strong on-line group and that has greatly helped her but she can't live there. We all need someone to believe in us, it should be those closest to us but unfortunately, especially with this disease, that isn't always the case.

Why have I shared this story with you? Because there are a few things I share with people when I talk with groups on this topic (well more than a few but a few that I try and stress);

1) Never compare your pain with someone else's.

2) The pain IS in your head,(that is where we register pain) but you aren't making it up!

3) You aren't alone anymore.

4) Don't sweat the petty stuff ... and don't pet the sweaty stuff.

Don't feel you have to battle this disease, or any chronic pain disease, by yourself. There are support groups and chat-rooms, and listserv's all over the internet. Or look for a local support group to belong to, to help grow, to share your energy with. Just do your due diligence to ensure they end up being a positive influence on you and others. And if you are in remission or heading there ... don't pull away from these groups. Now is when the other patients need to hear from you the most.

So the next time a Dr or a friend or anyone says "Your pain is all in your head", say "OF COURSE IT IS SILLY! For that is where we register everything; pain, happiness, sadness, taste, you name it!" Then walk away with your head held high. Or roll away, or limp away, but --- away with you! Leaving them with a confused look on their faces and you smiling.

I have stood here before inside the pouring rain
With the world turning circles running 'round my brain
I guess I'm always hoping that you'll end this reign
But it's my destiny to be the king of pain

There's a king on a throne with his eyes torn out
There's a blind man looking for a shadow of doubt
There's a rich man sleeping on a golden bed
There's a skeleton choking on a crust of bread

King of pain

So, how is the HBOT going?

On Sunday I had a bit of a setback. The burning pain in my feet, hands, lower legs, and arms came screaming at me and went through the roof! I realize, in talking with other patients that this can happen during treatment but boy-o, was it tough. It felt like I was run over by a truck on Sunday and then a smaller truck on Monday.

Today is a little better. I had a treatment this morning and the burning pain is much lower again in my hands and right foot (that left foot is stubborn). What also got raised on Sunday was the crushing pain ( a common CRPS symptom) in my legs, which has thankfully subsided, and that most horrible of feelings; what I like to call "walking on broken glass". It feels like my heels are full of pieces of broken glass and every time I place my feet on the ground those shards slice upward. I haven't had those feelings for many weeks and so it was ugly having them back.

My eyes, which were the first place I ever got CRPS, have always been the worst pain for me. I haven't met too many other people who have it in their eyes but I have had a lot of people ask me what it is like having CRPS, chiefly burning pain, in the eyes.

This is where I can absolutely relate to those patients who have talked about how they wanted to have their arm or leg amputated. Their pain was that intense, that horrible. Of course nowadays we all realize that doing so would simply lead to phantom limb pain, no limb, and the patient still having CRPS. But early on in my disease, back about 30 years, they looked into the idea of some sort of an eye transplant. Not because of the CRPS (they hadn't diagnosed it yet) but because of the poor vision. They thought the eye disease I had, that originally they believed was the cause of the pain, might be eliminated if they switched out the eyes. We never did it of course although I did end up with a corneal transplant, which didn't help either the vision or the pain.

When I was younger and they were still confused about what was happening what they were convinced of was that I was exaggerating the pain. There was no reason for the kind of eye pain I was describing so I was either making it up or possibly taking drugs or seeking attention or maybe a combination of the above. I was fortunate in that I had parents who believed in me absolutely.

So, what does it feel like? The burning in the eyes?

It feels like having two hot burning coals where your eyes should be. Like there are giant flames shooting out of my eyes all the time and I am confused why no one else can see them. If I could only rip them out of my head, I wouldn't hurt so much. I need to constantly douse them with water to keep them moist but it is like trying to put out a forest fire with a squirt gun. (part of that is because I had my tear ducts sewn shut many years ago - not because I didn't want to cry but due to another issue). Bright lights hurt them, a slight breeze causes them pain, if I am tired they burn more, when I am stressed they are the first area of my CRPS that gets increased.

The bottom line is, although I have CRPS full body (although less so currently due to the Hyperbaric Oxygen Therapy thankfully), my eyes are definitely the most painful area of my body.

When I went into nearly complete remission in 2003 and again in 2007, the part of my body that was not affected by the ketamine was my eyes. For that treatment, as with HBOT, it is "what was affected first will go way last". So even though many patients report a positive change in their vision during HBO Therapy, I am not anticipating any change in the eye pain until nearer the end. But I am praying and hoping to be surprised sooner!

In spite of Sunday, in spite of that spike in pain, I won't give up. I did take off Monday from HBOT, hence no Blog yesterday, but I was in no shape to drive. But I was right back at it today.

I am too stubborn to give up!

Peace, Keith

HBOT - END OF WEEK FIVE - Varied Depth Dives

2008-08-01T15:39:00.003-04:00

Ok, so not a very exciting title today but it is Friday :)

Someone asked me what the difference was between the two different depths, why should the two different depths make a difference in the treatment of CRPS?

Good question. The simple answer, as shared by Susan Rodriguez of RAPID RECOVERY HYPERBARICS ; "RSD is neurological in nature and yet it manifests itself in physical symptoms," she says. "What that means is that the disease needs to be treated with two approaches. One goal is to restore circulation, reduce inflammation or edema, and remove the swelling in affected limbs so the limbs can live. The other goal -- if you want to eliminate the disease -- is to work on the brain."

"With RSD, pain is read through sensors in the sympathetic nervous system. (The sympathetic nervous system is what is activated in phantom leg pain, for example.) "Hyperbaric Oxygenation Therapy, however, can make the switch in the brain back to the central nervous system," Rodriguez says. Under a doctor's direction, she treats both the affected limb and the brain by different atmospheric pressures when the patient is inside the chamber."

"Different undersea depths work on different parts of the body," she explains. "Deeper depths (up to 33 to 45 feet undersea) work more on tissue and bone, while milder hyperbarics (such as 18 to 24 feet undersea) work on the brain. Since we are working on both things, I take patients to all those levels. Almost always, the first symptom to come is the last to go. And then the symptoms are gone!"

You can read more on this article by going to "HBOT, WHAT IS IT"

Studies have shown that CRPS patients have abnormal blood flow in the brain, and that blood flow is restored to the brain at between 1.2 and 2.0 atm. The goal is to normalize the blood flow and enable the brain to "read pain" properly. That can sometimes be achieved by HBOT at the shallower depths; such as 1.75 to 2.0 atm. But first you have to normalize blood flow and nerve function to the affected part of the body, the CRPS affected area, through the deeper dives. Relief, and a "re-setting back to normal" if you will, can hopefully therefore be achieved by a combination of the two depths.

This is the idea behind the varied depth dives.

As I wrote yesterday every patient is different. I have heard from quite a few people who had the varied depth dive protocol and there were a handful of different approaches with basically the same idea; the main variations being the number of total treatments (averaging around 35-40), the days used for each depth (either every other day or switching depths during each dive), minutes at each depth, etc. The bottom line ends up the same.

I also have some other information to share today.

Some have asked what the larger multi-person chambers looked like; CLICK HERE FOR A PICTURE.

There is even a picture of one of the earliest "monoplace" units used in 1915. Reallllly looks comfortable!

The National Hyperbaric Centre in Ireland website answers another question submitted; "does smoking affect my HBO Therapy or would it preclude me from even trying it?"

The whole idea behind this treatment is to promote healing and recovery. This process of introducing oxygen, in solution, into the tissues of the body, promotes the clustering of capillaries and increased collagen to the tissues where the body needs the effect the greatest. Tobacco smoke is known to reduce that effect and literally retard the benefit of the therapy the smoking patient receives. It is highly recommended that the patient refrain from smoking during their entire course of treatment, maybe even allowing the patient to quit all together.

Also, Two other questions were asked at the recent pain meeting as well as asked via email.

DOES MY PRIMARY CARE PHYSICIAN OR A SPECIALIST REFER ME FOR THIS TREATMENT?

That depends upon the reason you are being referred for Hyperbaric Oxygen Therapy. Your Primary Care Physician may refer you directly to us for treatments or he or she may first refer you to a specialist who may then recommend treatment with Hyperbaric Oxygen Therapy.

In any case do not feel intimidated from asking your Primary Care Physician to prescribe the therapy for you. If you need treatment for one of the above source diseases or disorders, you may wish to seek advice from a second physician to be sure you are getting the best treatments available. If your practitioner hesitates or is not completely familiar with Hyperbaric Oxygen Therapy, check out our library of articles and show them to the practitioner, or even refer your practitioner to us.

WHAT DOES THE TREATMENT FEEL LIKE?

If you have ever dove to the bottom of a pool, or flown in a plane, you can relate to the sensation of your ears popping. You will be instructed on methods of equalizing the pressure in your ears. Please follow the instructions carefully and avoid a feeling of fullness in your ears, this will protect your from any discomfort during your experience. By holding your nose and attempting to blow through it, or simply swallowing, chewing gum, or sipping on water will allow the pressure to equalize in the middle ear, through the eustachian tube. It is only necessary to do this during the first few minutes of the treatment. The remainder of your treatment should be a time for you to read, sleep, watch TV, or just relax. Patients of all ages generally tolerate the treatments very well.

At first, while the chamber is being pressurized, or what is referred to as a diving to depth, you will experience the sound of the air or oxygen (This is depending upon the type of chamber you are being treated in.), which may be quite noisy. It will get warm at first because as you add pressure to any given object, it will increase the temperature, but when the chamber reaches the pressure or “Depth of Dive”, the temperature will automatically adjusted to a comfortable setting.

Both of these answers come from the National Hyperbaric Centre in Dublin, Ireland.

Thanks!

Have a great weekend guys!

peace, Keith

HYPERBARIC OXYGEN THERAPY FOR CRPS - VARIED DEPTH DIVES

2008-07-31T16:29:00.002-04:00

Good day everyone!

Or good evening, depending on when you read this of course.

I want to thank everyone who has not only shared this with their friends but also those who have forwarded it on to the CRPS and RSD websites they are a part of. I appreciate the vote of confidence.

On another note, because this blog has been so successful I was thinking of starting one this weekend for another organization I belong to; Procrastinator's Anonymous. But on second, that can wait until September.

People have asked how I like it down here in Florida, if it has been good for my CRPS. Absolutely. The cold weather made our CRPS worse. If you check out the RESULTS OF A NATIONAL SURVEY OF CRPS PATIENTS that American RSDHope did a number of years back (most of the results of which remain the same), you will see that 71% of respondents felt that the cold made their pain worse. 16% felt the warm weather made it worse, 22% felt it made no difference. (it adds up to more than 100% because some patients reported that both the warm and cold weather made their pain worse)

Also in that survey, 95% of CRPS patients reported having Burning Pain; 79% memory problems (I think that was the number); 74% said they dealt with Depression; 89% dealt with Allodynia; 60% were Touch/Sound Sensitive; 64% dealt with Weight Gain. There were many other findings. Drop by and check out some of the findings!

I think that one number that mot likely has significantly increased from the time of the survey is that 44% belonged to a Support Group. I think in the last five years alone membership in these groups, both local and on-line, has increased dramatically; as well it should.

On-line groups provide a place for patients who aren't mobile and/or don't have access to a local group as well as provide patients with a way to share information regarding their disease. Local groups provide much needed personal contact for not only patients but also their loved ones. They also enable patients to share information on local physicians and therapists.

It is time we did another national survey though.

So, how is my HBOT going?

It is going well. We had hit a wall, as most of you know who have been following my blog, a sort of impasse, where my pain had actually increased. This is a typical point in the therapy for CRPS patients unfortunately. It is one most of you will also have to deal with at some point and have to PUSH THROUGH. It isn't easy but any of you who have dealt with this disease, have lived with this disease for a year, or two or five, are tough, are strong. If you can deal with the constant pain of this disease you can handle pushing through the wall, especially when it could mean a lot less pain on the other side!

So how did we do it? What did we do to help get me through, over, around the wall?

We did something that was brand new to Dr Spiegel and his clinic. Something suggested by Susan Rodriguez of Rapid Recovery Hyperbaric's in CA, and several full-body CRPS patients I know who have been helped. That is, the varied depth dives.

There are some clinics around the country that are doing variations of this method; where they vary the depth of the dive either from day to day or even during the same dive; from the standard treatment depth of 2.4 atm to the shallower treatment depth of 1.75 atm.

I heard from many places and nearly all had great results. Dr Spiegel was open to trying this since we seemed to have come to an impasse in my treatment. I was not getting beyond the wall so we decided to try three days completely at the shallower depth. At the end of those three days we seemed to have broken through the ice and the healing seemed to have begun.

That was last week. You will notice that was when my pain began to drop.

This week we did, Monday and Wednesday at the standard treatment depth, and Tuesday, Thursday at the shallow depth. If you recall, my burning pain has been receding steadily!

So we will continue on this path and se where we are at the end of next week, and then reassess.

Now, does this mean that this approach should be used on every patient or that here at Dr Spiegel's clinic he is going to change his protocol for CRPS patient's to the varied depth protocol?

No and No.

Remember, every patient is different, especially with CRPS. Every time I speak at a pain conference or meeting I try and stress this point when patients and/or loved ones ask about various treatments. CRPS is a very complex disease. It can begin in many different ways and take many different paths as it progresses. One treatment may work for 3 patients and not for the next 7. About the only thing that holds true is that we need to try and stay away from invasive treatments, anything that can possibly further involve nerve damage.

So, we will continue our therapy, continue trying this version and learning as we go. maybe it will help another patient down the road and hopefully it will continue benefitting me as well.

Take care everyone,

Peace, Keith

HYPERBARIC OXYGEN THERAPY - PUTTING CRPS INTO REMISSION?

2008-07-30T16:08:00.002-04:00

Well, it is still too early to tell what the end result will be but it sure has gotten a foot in the door.

As I mentioned with quite some excitement yesterday the burning in my hands went down to about a one last night. By the morning it went up a little to about a 1.5 or a 2. Still amazing. I am anticipating it will continue to fall. The left foot continues to be about an 8, the right foot has dropped to about a 5, the eyes are still very strong and my ears as well. But, considering I started out with burning almost everywhere, THAT AIN'T VERY MUCH :)

I have noticed that my allodynia hasn't gone down very much yet. Some of the past patients have mentioned they saw a big difference around the 30 to 35 treatment mark.

So before I get to your questions, here is mine for you.

For those of you who were helped by HBOT, did you have your allodynia decrease as well, and if so, when did that occur?

Also, I have only heard from four of you who had the varied depth treatment. Are there any others who had their HBO therapy changed after the 25 or so treatment? In other words, where they altered the depth, maybe day to day, going from shallow one day to deep the next? If so, what were the results?

Ok, now here are your questions.

Someone had written to me asking if it were possible for someone with a spinal column stimulator to have HBOT?

The answer is yes. As a matter of fact I have a link for an HBOT study that was done on patients who had SCS units.

Someone else asked, "Why does HBOT work?"

On the Hi-Tech Hyperbaric Medical Center website, it states;

"Nature has dictated that healing cannot take place without appropriate oxygen levels in the body’s tissues. In many cases, such as those involving circulatory problems, Strokes, anoxic brain injury, and near drowning just to name a few, adequate oxygen cannot reach the damaged area and therefore the body’s natural healing process fails to function properly.Oxygen given with increased pressure can correct many serious health problems. To provide this increased pressure one must be within a pressurized room, a Hyperbaric Oxygen Chamber. Oxygen, given at normal atmospheric pressure is insufficient to raise tissue oxygen levels. The answer is to deliver oxygen with a slight increase in pressure with a chamber to raise the oxygen tension above the normal red blood cell saturation.

Interesting.

Also, it was asked whether you could continue your HBOT if you develop a col or the flu. This is best addressed by your HBO Doctor but the main problem here would be the inability to clear your ears. If you can't clear your ears you won't be able to descend.

Another question was "How do I know that my HBO Technician is properly trained?"

In 1991 the National Board of Diving and Hyperbaric Medical Technology (NBDHMT) introduced a standard certification program for all hyperbaric technicians.

And someone asked for more testimonials besides the ones on Dr Spiegel's site and the Rapid Recovery Hyperbaric site. Here is yet one more site with more testimonials of various diseases treated with HBOT.

Lastly, if anyone is reading this who lives in the Tampa Bay/Palm Harbor area, or happens to be visiting the area, our local CRPS support group will be holding a pool party this Saturday, August 2nd, in Tampa Bay. It should be fun and we will be having a cook-out as well. C'mon over! I promise to try very hard to stay awake for the whole afternoon!

Take care guys, and remember, hug your caregiver tonight!

Peace, Keith

OXYGEN IS A GAS!

2008-07-29T16:38:00.002-04:00

Humor is one of the best ways to deal with chronic pain. Laughing triggers endorphins and that helps battle pain.

So hear are a few little tidbits for you;

Science Exam Quotes (from 11 year olds)

_{Laurie Sale/Norman Josephs}

* "Water is composed of two gins, Oxygin and Hydrogin. Oxygin is pure gin. Hydrogin is gin and water."

* "When you breath, you inspire. When you do not breath, you expire."

* "Three kinds of blood vessels are arteries, vanes and caterpillars."

* "Blood flows down one leg and up the other."

So, what is the latest update?

Fantastic news. After this mornings treatment, I noticed the burning in my hands has decreased to only about 10% !!!!!!!!!!! That is nothing! So exciting!!!!

The allodynia is still quite strong, as it is in in my feet, legs, and arms still and the burning is still strong in my left foot and a little less so in my right foot. But one step at a time. This is so amazing.

After my discussion the other day of the Third Symptom of CRPS, Spasms in the blood vessels and muscles of the extremities, I received a few emails. Some saying they were grateful to hear they weren't the only ones who experienced those things and some asking what the other three symptoms were. I even got two asking if you needed to have all four symptoms in order to have a diagnosis.

So let me try and answer all of those here :)

First, the FOUR MAIN SYMPTOMS OF CRPS are;

1) Constant Chronic Burning Pain (includes allodynia - extreme sensitivity to touch, sound, vibration,

2) Inflammation - This can affect the appearance of the skin, bruising, mottling, etc.

3) Spasms in blood vessels and muscles of the extremities

4) Insomnia and Emotional disturbance (includes major changes to the limbic system; among them are short-term memory loss, concentration difficulties, inability to find the right word, depression, etc.)

There are other CRPS symptoms of course.

In answer to the question about whether you need to have all four symptoms; no. But it is unusual for a patient not to have at least three of the four. Not every patient has the constant burning pain but probably 85% of patients do.

On another note, we recently added an article from TIMES ONLINE called "IS PAIN ALL IN THE MIND?"

It is an interesting article but I think it falls far short of what the typical chronic pain patient deals with. It deals more with what I term "simple pain". But check it out and decide for yourself.

HBOT CLINICS - Someone asked me for a list of clinics around the country. If you visit the links in our HBOT section you can find some of the clinics there and most of them have a list of clinics. For example; the AZ HBO Clinic has a LISTING OF HBOT CLINICS

Also, someone asked what conditions are covered for HBOT and which aren't covered by are treated with HBOT.

On the RAPID RECOVERY HYPERBARIC website, there is a great page that lists these two things right next to each other. Check it out!

Ok guys, that is it for today. Check back tomorrow!

peace, Keith

HYPERBARIC OXYGEN THERAPY - WEEK FIVE

2008-07-28T16:08:00.002-04:00

I began my fifth week of HBOT today.

So what changes have I noticed?

My CRPS, which was full body at the start of this process, seems to be mainly in my feet, hands, eyes, ears, and some in the lower legs and a little in the arms, at this point.

Now a "typical" CRPS patient might look at having CRPS in their feet, hands, etc. as being pretty horrible. As well they should. But for those of us with full-body or "systemic" CRPS, that is actually a big improvement. A cause for celebration.

Celebrations are all relative, as the joke goes ...

My wife and I were sitting at a table at my high school reunion, and I kept staring at a drunken lady swigging her drink as she sat alone at a nearby table.

My wife asked, 'Do you know her?'

'Yes,' I sighed, 'She's my old girlfriend. I understand she took to drinking right after we split up those many years ago, and I hear she hasn't been sober since.'

'My God!' says my wife, 'Who would think a person could go on celebrating that long?'

And that's when the fight started....

Hmmm. lol

Anyway ...

I was speaking at a meeting for a new CRPS group in Orlando on Saturday and someone there asked me "What is it like to have pain everywhere? Is it really head-to-toe?"

I know she hesitated asking it and even said, "if it is too personal I apologize" or something to that effect. It is a question I have been asked many times. Consider that only about 8% of all patients end up with systemic CRPS and that most patients haven't spoken to or met many other patients, it isn't unusual for most to have never met someone with full body. I don't mind sharing my story at all, it is part of what I consider my mission, how I enjoy helping other patients and their loved ones.

So now my pain isn't everywhere. Right now , as I mentioned, my pain has "localized", meaning instead of being centered in the brain it seems to have gone out to the extremities and the pain is now being felt where it is supposed to be felt, in the extremities themselves. It is as if the nerves are re-learning the correct pathways again, are re-training themselves to function normally again. Maybe I am oversimplifying it but that is what it seems to me.

I did want to answer some questions posed to me over the weekend by either patients considering the treatment or those undergoing it now.

1) Does HBOT make you tired? Absolutely. It will make you extremely tired, as if you ran a marathon. Most patients take a "hyperbaric nap" after their treatment and then sleep well again in the evening often reestablishing their REM sleep patterns.

2) Is it normal that you feel really hungry? Yes. Your body is re-building pathways, generating new blood vessels, growing tissue, etc. I am not sure that is why but it makes sense to me. Either way, yes you will be very hungry and need to eat, especially right after your treatment. It is very important to eat fruit or something along those lines immediately following your treatment. That will also help to prevent those annoying little headaches that can sometime crop up.

3) Is ear pain a sign I can't have more treatments? Ear pain is a serious issue with regards to HBOT. Because you are constantly descending and ascending you have to use your ears as "balancers" so to speak, they allow you to equalize the pressure as you descend and ascend. There is a small percentage of patients who develop ear issues, these can be serious. If you experience ear pain, let the tech and/or Dr know right away. Don't hide this fact thinking it will go away.

Oh oh, ok. guys. we have another one of the many thunderstorms that role through Florida this time of year. Need to get off the computer.

If you have questions, send them to me at keeths@mac.com or leave a comment on the blog and I will try and find the answer for you.

Thanks for listening.

Kei --- arrrrrhhhhhhh

ooops. That was a close one!

Today, try to make a difference in someone's life

2008-07-26T06:54:00.003-04:00

Today's blog is quite different. It is not about HBOT. It is about what I have been thinking about while I have been in the chamber this week, when people ask me why I am doing it, besides the obvious reasons.

After all, I have done the low-dose ketamine, and blocks, and many other treatments. Most treatments except invasive treatments. Why do I keep doing them? Besides the prospect of going into remission, which I have achieved in the past and while glorious is also not permanent yet. I get asked this question a lot. While getting ready for a meeting of CRPS patients in Orlando today, I thought about it some more. Here are some of those thoughts.

What will you do today that will enhance someone's life?

What piece of information will you share that could help re-shape how someone looks at their life, their pain, or simply enable them to better approach this day?

What kind words can you offer a friend or a total stranger that could have an impact far beyond the effort it takes to impart them?

Success should be less about what we personally accomplish and more about what we enable others to achieve. Not how high we climb, but how high we encourage others to dream.

When you depart this world will they say;

"He was a man who made a lot of money, he was a success!"

"He was a man who touched many lives, his presence will be sorely missed."

My father was such a man, Bob Orsini. His presence filled the room and his smile lit up every face there. He always had a kind word for you and he had time for everyone. I think he was at his happiest when he was with his family but a close second was when he was with a group of people, any group.

Bob, or Dad O as many in the RSD community knew him, helped many RSD/CRPS patients; as has Mom O, Lynne. I think of both of them and the hours upon hours they put in, and Lynne still puts in, helping patients and their loved ones deal with this disease every day.

Why these thoughts?

When you lie in these HBO chamber for hours each week, even with the TV going in the background, you have a lot of time to think. I think a lot about my Dad and hope that he is proud of the work we are still doing with American RSDHope. It is yet another reason why I am doing what I am doing with the blog and the HBOT. To try and educate the community, patients, and their loved ones. Our family has dedicated much of our lives to this cause for the last 15 years and we have lived with this disease nearly three and a half decades.

We are not martyrs by any means. There are countless other families and individuals all across the globe as dedicated, reaching out, doing everything they can to further the cause. We have been very blessed with success, we have gotten so much more out of the whole experience than we have put in, and met some amazing and courageous people along the way. One day we hope that we, and the other organizations, will be so successful that we will no longer need to exist. A cure will be found, and there will be no more CRPS!

So what can you, one person, do?

You can reach out, over, down, and help someone else. Put aside your own pain for a moment and think about how you might be able to encourage or educate someone else.

I am not saying to stop thinking about your pain and it will go away. You have been told that before and as they say, "How's that working out for ya?" It works about as well as trying to drain the ocean with a tea strainer.

Forgetting about something that permeates everything you do, every second of your day, awake or asleep, is next to impossible and is usually only encouraged by people who have never tried to do it.

Sort of like putting a smoker in a room, surrounding her with cigarettes, and telling her to stop thinking about smoking. Sure. No problem.

I am not asking you to stop thinking about your pain, just asking you to put it on the back burner. Instead, think about what else you can do. It doesn't have to be anything big. Do you know of another patient who is feeling down? Having a difficult time and could use a little encouragement, maybe a card or a phone call to let them know they aren't in the fight alone? Or maybe share a few jokes you found on the internet, or a humorous story, by calling them. Don't just forward it to their email box, that takes no effort. Maybe you came across an article that you know might help someone; a friend or a loved one.

It is also a good thing to remember those who take care of us. Take a few minutes to drop a line, letter, or an email to your caregiver, nurse, or Doctor. Let them know you appreciate the extra care and attention they give you. When was the last time you did that? You might be surprised how far these simple thank-you's go. They have a cascading effect.

Let people know you believe in them, ask them how you can help them achieve their goals. we are always so quick nowadays to ask others for favors but far slower to ask people how we can help them.

Not everything we do in life has to be about us. We have to work with others in mind because everything we do affects other people in some way. the great thing is, WE get to choose if it is for the better or the worse. What is your choice today?

Just a few random thoughts, from my hyperbaric chamber this week :)

peace and freedom from pain, it is all we seek,

Keith

HYPERBARIC OXYGEN TREATMENT - END OF WEEK FOUR

2008-07-25T05:20:00.002-04:00

So today ends my fourth week of HBO Therapy. Actually Monday since we missed one day due to a holiday. After today that will be roughly 27 or so hours of HBOT, actually therapy at treatment depth (not counting the time it takes to descend and ascend).

Which brings me to a question someone asked me last week that I wasn't able to get to.

What exactly does the dive entail? What is it like? How do you prepare?

On the website for the Hyperbaric Oxygen Clinic of Sacramento website it explains this well;

The treatment process may be modified for different types of chambers, either the monoplace or the multi-place chamber. In the monoplace chamber, one person at a time is treated, whereas in the multiplace chamber where more than one patient is treated at the same time, with an attendant present in the chamber. (I am being treated in a monoplace chamber)

Only 100% cotton gown, which is supplied, is permitted in the chamber.

(This varies by clinic. At all clinics what you wear needs to be 100% cotton only but in some you can bring your own cotton clothing. For instance, I wear shorts and a tank top usually. )

No cosmetics, perfumes, deodorants, hair preparations, wigs or jewelry are worn during the treatments. Patients are advised not to take carbonated drinks or alcohol for at least four hours prior to each treatment, and that they should give up smoking and tobacco products, as these interfere with the body's ability to transport oxygen.

Once inside the chamber, the patient will be experience the changing pressure which is the same as that felt in an airplane when ascending or landing. Prior to the treatment, the patient is instructed in techniques of equalizing the ear/sinus pressure by yawning, swallowing, or attempting to blow through the nose while holding it shut. During the treatment the individual will be breathing 100% oxygen, dispersing oxygen into the blood plasma and delivering up to 15 times as much oxygen to tissues as would breathing room air. The treatment length is 60 - 90 minutes, depending the diagnosis and the physician's determination of treatment. The acrylic walls allow for the trained technicians to closely monitor the patient, as well as providing comfortable viewing out of the chamber. From inside the chamber the patient can always communicate with the attending technician via intercom, as well as watch TV, listen to music, or just take a nap.

Yesterday, after my session, Jason Bingham came by Dr Spiegel's clinic for a tour. many of you have been to Jason's RSD BLOGSPOT where he shares all sorts of articles on RSD. He got to see the many chambers available there.

So what is my latest update?

I have had a pretty good week. My full body CRPS seems to be in a serious state of flux. Many of the areas where it once was, it has retreated from and it seems to be concentrating more in the four extremities. It is too soon to really go beyond this description but we will see how everything feels by around mid-week next week. It does appear to be headed for a significant change right now though, the biggest so far.

I have also noted a fairly significant change in the frequency and length of the muscle spasms in my arms and legs. I have had, despite some of the best meds, these spasms for many years, especially at night. Most of you probably have as well. Spasms in the muscles and blood vessels are one of the FOUR MAIN SYMPTOMS OF CRPS. It wasn't anything I hadn't learned to deal with but it could be painful at times and it was always annoying and kept me up or woke me up at night. But these past three nights my muscles spasms have pretty much stopped! I was also able to cut back on the medication I take for them without noticing an increase at all!

As I mentioned before, I would be thrilled to go into remission from this treatment but I would be almost as happy to get 50% remission, especially if I was able to cut my medications significantly in the process. How sick are all of you of dealing with the side effects of the medications? More and more I have been looking to natural remedies where possible to help.

Speaking of which, some of you have asked about vitamins and I thought I had spoken of some here but I will again briefly.

During the HBOT it is recommended that you take vitamin E and some form of B. Many clinics administer vitamin B injections; some before the treatment and some after. These will help replenish the body and speed healing during treatment. It is also recommended that pain patients as a general rule now seriously look at a few other vitamins/supplements such as; Vitamin D, magnesium, and Fish Oil. Many pain patients are found to be deficient especially in vitamin D. Another one to look at that helps promote a more restful and healing sleep is melatonin; the fast-acting chewable or sublingual version rather than the caplet or pill.

ok, I am off to my session. Tomorrow I am going to visit the Orlando CRPS group for their first meeting!

Then collapse and sleep most of the weekend :)

peace, Keith

TREATMENT CONTINUES - BLURRY EYES - HBOT,WHY NOT MORE WIDELY ACCEPTED?

2008-07-24T06:38:00.005-04:00

Ok, tried to add a post yesterday but my eyes were blurry again following treatment so I am not sure what it would have ended up looking like and decided I better not chance it. Although I remember in high school reading about a study they did where they filled a room with chimpanzees and gave them all typewriters and by the end of the week they said they had a complete novel just by chance!

Although, looking back, I think that story was told to me a teacher I had who was trying to teach me TYPING at the time. You can probably guess how good I was.

So how is treatment going?

Well, I jumped a little too soon feeling I was over the wall, or through it. I am doing better though. I hate to give percentages on improvement or use the pain scale for reasons mentioned before. Plus, my saying I am a "7" has no meaning for anyone else because my 7 could be your 9, or your 5. Plus, this treatment, at this particular point in my treatment, is an up and down thing. One day up, another day a little down.

I will say a few things though.

1) I definitely feel like it is helping.

2) My sleep has improved.

3) I feel like I am at the top of a precipice and am so close to jumping off of the pain hill, so close.

4) even if I don't achieve complete remission at the end of this, I will be thrilled with partial relief, a reduction in meds, better sleep, etc.

5) Everyone needs to remember that I am not a "typical" case. My CRPS is not only systemic it has been around for more than 3 decades so it is heavily entrenched.

6) Because of what I just stated, I am thinking I need to go beyond 20 treatments if we are going to have a real chance at beating this thing.

I am a little behind in answering some questions posed to me. I will try to catch up this weekend if I can. Bear with me, I will eventually get to them all.

What is happening right now, besides the blurriness, is something weird but something that is positive and is supposed to happen to those of us with full body CRPS. My pain seems to be extending outward, to the extremities, like a bomb went off in the middle of my body and it forced all my pain outward to my four limbs.

Now some of you might say, "How is that progress? Having pain in all four limbs?" Well, when you have had it full body for decades, in every part of your body, having the majority of your pain seem to extend to just your limbs, mainly feet and hands, that is a pretty kewl thing!

It has only happened in the last few days and we will have to see what occurs in the next few but it is exciting!

I did want to get to a couple of questions quickly before I went in for my treatment this morning;

1) A Doctor emailed me asking me if this was a viable treatment for his CRPS patients and who would he talk to about it.

The answer is absolutely yes. For more specific information on CRPS and Hyperbaric Oxygen Therapy check out the link on Doctor Allan Spiegel's website. I would also suggest your talking with him directly Doctor. Before I was treated by him, before I even was thinking of being treated by him, I sat and had a couple of long talkes with him about HBOT; what it was, how it works, and more specifically, why it would work on CRPS patients. I think you will find a talk with him as illuminating as I did.

You can find his main website, NATIONAL HYPERBARIC OXYGEN THERAPY, here.

2) What does the chamber look like that I am using? I added an image above, at the top of the blog today. I tried to add it here with the question but I couldn't seem to do that :(

If you don't get the picture in your version, you can see one by going to THIS LINK. scroll about 1/4 of the way down.

3) Why isn't HBOT more widely accepted? In an article written by Elmer Cranton, M.D. "IF HYPERBARIC OXYGEN THERAPY IS SO GOOD, WHY IS IT NOT MORE WIDELY ACCPETED?" written in 2001, he said that only about 15% of medical schools have HBO chambers. If Drs don't know about a therapy they obviously won't prescribe it. If they don't prescribe HBOT, there is no incentive for more facilities to be established.

"Therefore there exist very few chambers, despite the potential need and benefit that could otherwise be achieved. Many of those are dedicated to diving accidents and are not available for other medical conditions. And, many are located in hospitals that restrict HBOT to a small number of medical conditions reimbursed by Medicare."

It is also very expensive to set up a new facility; anywhere from hundreds of thousands for a single unit to in the millions for multiple units and multi-place chambers. Zoning, fire protection, safety precautions, training, and much more increase the costs even further. These costs reduce the number of facilities even further.

The article goes on to state something that I believe strikes at the hear tof the matter;

"Psychological defense mechanisms also come into play. If a doctor is not taught about HBOT in medical school (and most are not), and if a doctor therefore does not routinely use or prescribe HBOT for patients, then one of two things must be true in their minds: 1) either that doctor's medical education was deficient and he or she is not providing the best of care for patients; or, 2) other doctors routinely using and prescribing HBOT for conditions that are not FDA-approved (off-label) must be "quacks" who exploit desperate patients. Which do you think their choice will be? It's apparently difficult for many medical doctors to shed an attitude of God-like omniscience and admit that they simply do not know everything there is to know."

"The medical profession is becoming polarized concerning HBOT. A large and powerful majority of medical doctors believe that HBOT should be restricted to treatment of those rare conditions with prior FDA approval. That majority now criticizes and even attacks the growing number of physicians who have become familiar with more than 30,000 published scientific papers the subject, and who advocate or use HBOT to treat patients with so-called off-label (non-FDA-approved) conditions. Opponents of such expanded utilization of HBOT should admit that they are remiss in their care of patients, they should open their minds, educate themselves further, and change their ways."

It goes on to discuss the plethora of published evidence and much more.

Definitely check out the article. It is very well written, here is the link again.

Have a great day everyone!

Peace, Keith

BLURRINESS IS AN ISSUE - VARIED DEPTH DIVES ANYONE?

2008-07-22T16:00:00.003-04:00

SORRY NO POST YESTERDAY - short post today.

My eyes, which are the original site, have been very painful the last few days and I have been experiencing blurriness in both eyes so typing isn't too easy. So this will be short too. Bear with me though ok?

I am not quitting, I will continue and come out the other side.

I have a question for those of you who have been through this before. It is one I have heard from a number of you about but I need more info on.

It is about varying the depth of the dives for CRPS patients after the third to fourth week of HBOT.

Some patients have stated that once they hit the wall, once their pain actually started to get much worse before it improved which usually occurred around the third to fourth week of HBOT, that at their clinic they changed the treatment protocol at that point; especially full body CRPS patients.

That instead of continuing the deeper dives that they had been doing they switched for a short time to shallower dives, to go after the sympathetic system if I understand it correctly. That the body is switching back to the central nerves instead of the sympathetic nerves, the signals are trying to re-route themselves to be sent along the correct pathways.

What ends up happening is what was affected last will go away first, and the first part of your body affected by CRPS will go away last. If I understand all of this correctly.

I see it in my minds eye as a gallon jug of pain slowly draining away. The stuff on the bottom of the jug was put there first and will be the last to go.

With full body, or systemic, CRPS it is made even more difficult because the disease is so entrenched, the bad pain pathways are so deeply embedded.

So, if you have been through the varied dives, especially if your clinic has done this on a regular basis, and/or yo have information you can share with me that I can share with everyone here, please email it to me at keeth@mac.com

Ok, sorry so short but my eyes and hands and feet are a little rough today folks.

Thanks for understanding,

Keith

HYPERBARIC OXYGEN THERAPY - END OF WEEK THREE

2008-07-19T16:06:00.003-04:00

Ok guys, it is Saturday and the end of week three.

Last weekend, I believe I stated that I thought this third week would be a big week. A week of some big changes. I thought I would hit the wall and I surely did. I also have been able to get over the wall and am coming down the other side.

Have you seen the new version of the show AMERICAN GLADIATOR'S? At the end of the show they have to run a gauntlet of obstacles. The last thing they face, when their bodies are fairly exhausted, is having to climb up a downward moving treadmill and then crash through a wall.

That is kind of how I feel. I have run the gauntlet, and Monday I hit the treadmill (or the Wall), and by Wednesday I was breaking through the wall. I still have a ways to go which I hope will happen over the course of the coming week, but I am considerably better today than I was on Monday/Tuesday.

With some treatments there is an immediate result, good or bad. Anyone going through this treatment has to look at it as if you are doing a marathon though and not a sprint. You have to understand from the outset that it is going to take however long it takes and you are going to stick with it to the end and beyond. Remember, sometimes the best results aren't seen for weeks afterwards.

How does HBOT actually work on CRPS?

Let me quote an article you can find on our website;

"Hyperbaric Oxygen Therapy (HBOT) is a new therapy for many individuals with CRPS/RSD. Interestingly, however, this therapy is not new at all." (Doctor Allan Spiegel)

"Spiegel says that HBOT supersaturates tissues that have been deprived of oxygen because of the swelling of a limb. Specifically, saturation levels of oxygen in blood and tissues increase 10 to 20 times while in the chamber. Further, HBOT has a tendency to constrict vessels by about 15%, which causes a decrease in swelling from the edema present in most people with RSD. "With HBOT,"Spiegel says,"we are looking at long-term improvement, reduction in pain, improvement in sleep -- and reduction in depression, because pain causes depression."

Susan Rodriguez, a certified hyperbaric specialist from San Bernadino, California, "With RSD, pain is read through sensors in the sympathetic nervous system. (the sympathetic nervous system is what is activated in phantom limb pain, for example). "Hyperbaric Oxygen Therapy, however, can make the switch in the brain back to the central nervous system," Rodriguez says. Under a doctor's direction, she treats both the affected limb and the brain by different atmospheric pressures when the patient is inside the chamber."

"Different undersea depths work on different parts of the body," she explains. "Deeper depths (up to 33 to 45 feet undersea) work on tissue and bone, while milder hyperbarics (such as 18 to 24 feet undersea) work on the brain. Since we are working on both things, I take patients to all those levels. Almost always, the first symptom to come is the last to go. And then the symptoms are gone!"

You can read the whole article by going to HYPERBARIC OXYGEN THERAPY, CAN IT RELIEVE YOUR PAIN? By Patricia McAdams.

So what are some of the things you should look for in a clinic?

In that same article cited above they offer some tips;

Choose a reputable center for your treatment, where your therapists understand all the risks and take all the safety precautions necessary to avoid a problem.

A reputable center will;

1) Be staffed by a physician and other healthcare professionals certified by the Hyperbaric and Undersea Medical Society.

2) Require a Doctor's prescription before giving therapy.

3) Have two or more staff members in the building at all times in the event one has an emergency.

4) Have strict rules about allowing nothing whatsoever in the chamber with the patient that could be combustible.

I have added some new links to the American RSDHope website section on Hyperbaric Oxygen Therapy. Pop by and check it out.

Now, to some questions.

Some have asked about books regarding HBOT. Here is an excellent link;

HYPERBARIC CLINIC OF SACRAMENTO - BOOK LIST

Also,

WHAT ARE THE POSSIBLE SIDE EFFECTS OF HBOT?

Someone asked me what the contraindications are for HBOT;

WHAT THINGS/SITUATIONS/DISEASES/CONDITIONS can present a problem for HBOT?

I hope that brings me up to date. Feel free to drop me a line, add your comment below about HBOT, CRPS, or just say hi!

Peace, Keith

ALL IN ALL IT'S JUST ANOTHER BRICK IN THE WALL

2008-07-17T19:08:00.003-04:00

All alone, or in two's,
The ones who really love you
Walk up and down outside the wall.
Some hand in hand
And some gathered together in bands.
The bleeding hearts and artists
Make their stand.

And when they've given you their all
Some stagger and fall, after all it's not easy
Banging your heart against some mad bugger's wall.

from PINK FLOYD'S "The Wall" album, "Outside the Wall (Waters)"

Ahhhh, the WALL. That ubiquitous wall. That smothering wall.

The wall is not unique to HBOT. CRPS patients, and other chronic pain patients, have often run into a wall when they have gone through treatments and/or started medications.

Today was treatment day NUMBER 13.

My pain is definitely down from Monday. On Monday and Tuesday walking was a very painful experience. Typing was very tough. Even sleeping didn't come easy. But Tuesday was a touch better and today, Wednesday, was even better. I am not quite yet where I was last Friday but it feels to me like I am starting to roll downhill; in a good way not in a Sisyphus way. As i mentioned at the beginning of the week or over the weekend maybe I had expected this to be a week of big changes. I am excited to see what next week brings!

My friends and loved ones are all walking up and down outside the wall, saying their prayers for me, and hopefully I am sharing some good information with everyone along my journey.

Someone wrote to me asking me "Does HBOT work for peripheral nerve injury?"

Yes, it is one of the things they are finding they have very good results with treating. Here is a link to some information on it; PERIPHERAL NERVE INJURY AND HBOT. (scroll all the way to the bottom).

BTW, we have added some new articles to the RSDHope website that have an impact on anyone on Medicare. Check out the WHAT'S NEW section for them, at the top of the AMERICAN RSDHOPE website

Tomorrow I should be even better than today so I expect to be able to contribute longer blogs again, back to where I was the first two weeks. Thanks for bearing with me this week guys. I promise to pick things up!

Peace, Keith

BREAKING THROUGH THE WALL

2008-07-16T17:07:00.002-04:00

On Monday I said I definitely hit the WALL, that place during Hyperbaric Oxygen Therapy where the pain actually gets worse before it gets better. It is also, unfortunately, the place where far too many patients call it quits feeling that getting worse wasn't in the bargain.

So, how did today go? The third day banging my head against the wall? Well, my head, feet, legs, arms, hands, etc.?

I walked in today and Phil, Doctor Spiegel's HBO technician, asked my what my pain level was my reply was "8% less than Monday".

"8% less?" he said. "But what is that on a 1 to 10 pain scale?"

Now any of you who know me know the conversation that followed :)

I hate the 1 to 10 pain scale that traditional pain medicine uses. I don't think it is useful when applied to CRPS patients especially. I understand, and Phil explained it well, the reasons that the medical community needs to use it; the universality and understanding of it across all types of medical issues.

My problem with it, and many CRPS patients problem with it though is that it is only useful as a yardstick, when looked at in totality of the patients numbers, rather than as a single days number. My 8 is nothing like a typical patients 8. CRPS is ranked as the most painful form of chronic pain that exists today.

Doctor Ronald Harbut, who is known in the pain community as the "Father of Ketamine" for his groundbreaking work in the field of treating chronic pain patients with low-dose ketamine, created a Pain-Chart sheet that I discussed with Phil and he asked me to bring it in to him and said he thought they might be able to use it. I have shared it with many Drs over the years who have adopted it.

Basically it is a standard 1 to 10 chart across the top, then below that you break down your pain even further by symptom; burning, tingling, crushing, etc. Many different symptoms are listed and you mark each one on the 1 to 10 scale. There is also a figure of a body where you mark where your pain is currently. Last, there is a space for additional remarks. Patients are asked to mark a new page for each day of the week, three times per day; morning afternoon, and evening.

By using three each day for a week, the Dr gets a very accurate idea of when your pain is the worst/best, how your pain ebbs and flows, and also eliminates the possibility that on the day you have a Drs visit you might have a day when your pain isn't too bad and you aren't showing many symptoms the Dr doesn't understand what your symptoms are; (which does happen, like bringing your car to the shop and it suddenly stops making that rattling noise, until you get it home again).

Long story short, well, ok, long story long, I said my pain was pretty much the same as Monday but a little bit less, still about a "9".

whew, I sure took the long way 'round the block there.

What I was trying to point out was that I think I am coming down off of the WALL, it is just a little so far, the pain is still pretty high, but it does feel like I am a little improved from Monday. I am really looking forward to tomorrow and Friday! I figure the rest of my treatments are all forward, that the hard part is behind me. I am not out of the woods yet I know. But I know I can see the other side of the wall :)

And that's a good thing!

Tomorrow I will have some additional HBOT information to share with you. Also, if you have any questions for me, please email them to keeths@mac.com

Don't forget, if you want to subscribe to this blog (it is free of course), just scroll to the very bottom of the page and click next to where it says POSTS (atom) that way the blogs get sent directly to your email box!

Have a good day guys!

Peace, Keith

DAY ELEVEN OF HYPERBARIC OXYGEN THERAPY

2008-07-15T16:28:00.002-04:00

Today my pain is still in a bad cycle.

I understood this was coming and everyone who has been following my blog should have too. If this is the first day you are reading my blog, please scroll down and read the days in order so you can understand all about how patients undergoing HBOT will sooner or later hit "the wall", the point during their treatment when their pain actually gets worse not better.

But it is at this point that you have to tough it out, hang in there until you get over the wall, go around it, or break through it. On the other side your pain will go down and the hope is, and the evidence points to, most patients having their pain going way, way down.

So to me, hitting the wall is a good thing. It tells me that the HBOT is working!

Think about it.

Just as Dr Spiegel, and most every HBOT Doctor advises, I have not started any other treatment at the same time, have not changed any medication, and I haven't changed my schedule much (except to cut down on my physical therapy a bit and of course gotten a lot more rest). This was to ensure that we knew any change that occurred to my CRPS, good or bad, we would know was due to the HBOT.

So it stands to reason if the pain is worse it is because of the HBOT. My body is growing new blood vessels, among other things, in those areas of my body where I have had CRPS (which is pretty much everywhere) for decades. The worst areas for me have always been my four extremities and my eyes; the very things that are screaming in pain right now. My body is trying to adjust to the healing taking place.

I know it is a simplistic way of viewing it but I liken it to the CRPS trying to hang onto my body while the HBOT is trying to toss it out. It turns my body into a battleground. It is why I am in such pain right now.

But I can fight through it as I said because off the pay-off. It is tough, but one day at a time.

Humor is one of the best tools to battle pain. Our HUMOR Section on the website is one of the most visited sections, outside of the pain areas. That and the POETRY Section have proven to be very popular.

Here are some of the excerpts from some CHURCH BULLETINS, always a good source for humor.; one of God's greatest gifts!

1- Miss Charlene Mason sang "I Will Not Pass This Way Again" on Sunday, giving obvious pleasure to the congregation.

2 - At the Evening Service tonight the sermon topic will be "What is Hell?" Come early and listen to our choir practice!

3 - Eight new choir robes are currently needed due to the addition of several new members and to the deterioration of several older ones.

4 - Scouts are saving aluminum cans, bottles, and other items to be recycled. Proceeds will be used to cripple children.

5 - Please place your donation in the envelope along with the deceased person you want remembered.

6 - Don't let worry kill you off - let the Church help!

7 - Irving Benson and Jessie Carter were married on October 24th in the Church. So ends a friendship that began in their school days.

8 - The ladies of the Church have cast off clothing of every kind. They may be seen in the basement on Friday afternoon.

Ah yes, humor is a wonderful thing :)

Lastly, on this day I want to give a shout out to the most influential man I have ever met. He had a wonderful sense of humor and even though everyone didn't laugh at his jokes, he certainly enjoyed them. Kind of like me today! Four years ago today he was called home. Dad, we miss you every day.

Peace, Keith

THIRD WEEK, DAY ONE - THE FIRST DAY OF THE WALL!

2008-07-14T16:18:00.003-04:00

ok, today I think I can officially say I have hit a wall, maybe the first, maybe the last, but it is definitely a WALL.

For those who don't know what I am talking about please refer to some of my previous blogs.

If you want to know what it feels like to have your CRPS pain spike a great deal in one afternoon.... let me sum it up in one word;

ARRRRRRRRRRRRRRHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!

Ok, maybe that sounds more like a pirate. "But I don't wanna be a pirate!"

I don't even own a puffy shirt.

Little shout out to all my fellow Seinfeld fans. Great episode.

Ok, my pain was flaring this weekend as I shared, but today after the treatment my feet and hands just went nuts within about 2 hours after the treatment.

So, should I just give up? After all, this HBOT was supposed to decrease my pain not give me more pain right? If I told my friends and family members it was making me worse they would certainly understand if I said I wanted ti quit. Well, some of them. Some of them would say, "What the heck did you spend the last two weeks doing if you are going to quit now? Just push through it you whiner!"

Then I would have to punch those guys and decide later that they were right so I will just skip all of that and decide for myself, it is just a wall.

I can handle a little extra pain. After all, the prize at the end of all of this, even the potential prize, is worth it. 50% , 75%, 100% relief of my CRPS pain/symptoms. Not to mention the fact that HBOT also helps Fibromyalgia, which I have as well. Who knows, in a month or two I may be so pain-free I will feel like I am 13 again. Minus the pimples and growing pains and awkardness, and, ok. maybe not 13 but that was the last time I was pain-free, 100% pain-free.

Short blog today. My body needs lots of rest today.

By guys, pray for me! I will be back tomorrow and know I won't give up. This is simply a minor set-back and I was expecting it.

Keith

AS THE VALVE OPENS ...

2008-07-13T12:56:00.002-04:00

Imagine waking up in the morning and feeling like there are giant flames shooting off of your feet, or like your legs are being crushed, or to see your hands curled up in a ball because of the crippling pain. Imagine recoiling in horror at the mere thought of your loved one hugging you, for fear of it causing you unimaginable pain.

Imagine not wanting to place your feet in shoes, your body in clothes, your feet on the very ground you walk on because you know that doing so will send ripples of pain throughout your body.

Now imagine knowing you will have to face these thoughts, these pains, every hour of every day, of every week, for possibly years to come.

That is what living with CRPS (Complex Regional Pain Syndrome), what used to be called RSD, is like.

So you can understand why patients suffering from this disease are willing to try just about anything, are so desperate for relief, are simply so worn out from fighting this disease, that any time someone offers them the slightest hope of relief, especially when they promise a cure or remission, they jump at the chance.

It is also why we have to be extra-vigilant. We have to make sure that we do our due-diligence when it comes to researching these treatments and methods. We need to find as much information, talk to as many people as we can, exchange information with other patients who have been through it, find studies regarding the method, etc. before we jump on the bandwagon.

Don't be afraid to ask questions; of your Doctor, of your friends, of your fellow patients, of your parents/loved ones. Remember, when it comes to health-care you are the customer, make sure those treating you remember that. They are providing you with a service and should not only be courteous and kind but also be willing to answer all of your questions without making you feel like you are imposing and keeping them from a much more important client/date.

All too often patients feel rushed by their physician and so they don't ask the questions they want to. Bring someone with you, as a portable memory since most of us with CRPS have a problem with short-term memory. Take notes and go in to the Drs office with written notes and questions. I always try to bring a written summary with me to the Drs office; how I have been doing since I saw him last, how I am doing now, major issues, and any refills of medications I need. It saves him a lot of time, which he appreciates, and this way I don't forget anything. Plus, I make a copy before I leave which I keep in my records so I can track it myself.

We were talking about HBOT on RSDHope Teens; a listserv for Teens with RSD/CRPS that is sponsored by American RSDHope. Sometimes there are questions that need a more in-depth answer or information that we have on the website that I will share.

If you are a teen or just entering college, this is an amazing group of young people. They are very smart, well-versed on RSD/CRPS, and not afraid to challenge their Drs with information they find. They also are one of the most supportive groups on the internet. I am constantly impressed by them and their questions. We formed this group back in 1997 I believe, shortly after we opened the RSDHope website. Some of the original teens have gone on to become educators and therapists; some have gone on to get graduate degrees; and some come and help out the current teens when they can with their support and answers.

We were talking on the teen list about HBOT. we were discussing a few specific cases and were talking about costs, length of treatments, length of dives (in minutes), how often you dive,

Some of what we discussed, my answer to the questions, I thought I would answer here.

- Some patients actually benefit from taking a few days or a week off from the HBO, then coming back to it. Maybe they are physically or mentally exhausted and need to recoup. Whatever the reason, they seem to improve oftentimes. Most of the time they do not recommend it though. They suggest you continue straight through your course of therapy; unless you develop problems with something like your ears, or another medical issue unrelated to HBOT such as a dental problem.

- HBOT can often have a delayed result as well. In the beginning of your treatment you often don't know if it is helping. This is especially true with CRPS because the pain is so overwhelming; going from an "8" to a "7" or even a "6" is often hard to distinguish.

Doctors like to use these 0 to 10 pain scales and maybe they work well for other diseases and pain syndromes but for CRPS they simply are insufficient. I always say it's like getting slapped in the face 1000 times a day. When you have it reduced to only 700 times a day how much do you really notice? Sure, your pain is reduced by 30%, which is a lot, but you are still getting slapped in the face 700 times a day and it hurts like you-know-what!

So if your HBO Therapy reduced your pain 30% the first week or two, you might not notice it too much, BUT, if you suddenly stopped, say for the weekend, or longer, you would definitely feel it and think that in fact, your pain had actually increased. This I think is where the rubber hits the road. This is where some patients decide that they can't or won't go through more HBOT and they quit, or decide, "I can do this, I can give it two more weeks (or whatever is left) because the reward, the pay-off is worth it!"

The same positive result can happen, only on a much larger scale, after you are done with the treatment. In some cases you may not feel the entire positive effects of the treatment for weeks after you finish because the body is continually building on its' success, on those new blood vessels, still clearing out the toxins in the body, still re-aligning those pain signals. It is a delayed reaction sometimes. After all, it took a long time for the CRPS to set in, it won't disappear overnight. It isn't a light-switch that Drs can just flip up or down, unfortunately.

And this brings us to another important point we discussed.

HBOT Doctors recommend that you don't undertake any other form of treatment at the same time as your HBO therapy. You should of course continue your normal medication, physical therapy, etc.

But if you begin two treatments at the same time how will you know which one is working? It would be near impossible. Plus, if you do the HBOT and spend $5,000 or $6,000 on HBOT, it might save you from spending $45,000+ on an implant, for just one example. And you wouldn't have to worry about the surgery.

Someone asked if it would be ok to start the HBOT, then take a week off to do low-dose ketamine, then go back to the HBOT? Same principle applies. You wouldn't know which helped you. Plus, most of the top Drs who do the ketamine infusion wouldn't want you doing the HBOT on either side. Both procedures are exhausting and both require a lot of rest to help the body heal.

Try one at a time and see how that works. Remember, your body is already weakened. Don't further weaken it by trying to do too much or nothing will work and you will make yourself worse.

On another topic, although related, in April of 2006, on the Discovery Channel they did a program on HBOT and RSD on a young girl. There is a link you can go to, to watch the video; DISCOVERY CHANNEL RSD VIDEO

Lastly, I wanted to share the link for the July CRPS Newsletter for RSDHope. I don't think I had that here before. It is also in the WHAT'S NEW SECTION.

Tomorrow I head back to the chamber for the beginning of my third week! I am looking forward to it. I am expecting it to be a week of big changes. This weekend I noticed less of a dramatic shift in pain/more pain than last weekend, which is a good sign I think. The CRPS pain in my extremities is still fairly significant but I definitely feel better when I am in the chamber and in the afternoon after leaving the chamber, especially this past week. Diving was much easier and I think I am getting more out of each session. I also slept last night from about 10:30 until almost 6:30 this morning with only a few breaks in between! That is huge for me!

Have a good Monday morning everyone!

Peace, Keith

HYPERBARIC TREATMENT, END OF WEEK TWO

2008-07-11T16:32:00.002-04:00

Well, it is the end of week two. My pain has spiked a little in my extremities; hands and feet. My right arm is a little sore, I think from the injections though. My eyes are fairly the same, argghhhhhh. But otherwise I think there is some improvement. I will know more on Sunday I think, when I have missed two days of treatment. Although I shouldn't notice as big a difference this weekend as I did last weekend apparently. I am hopeful to see big difference next week, maybe some big ups and probably downs, that will mean I am near the big wall!

Some have asked what other disorders/conditions/diseases are indicated for Hyperbaric Oxygen Therapy.

On Doctor Allan Spiegel's website, NATIONAL HYPERBARIC OXYGEN THERAPY , there is a very extensive listing. CRPS isn't mentioned there because there is an entire section devoted to it elsewhere on his site in the NEUROLOGICAL DISORDERS SECTION as well as in the RSD THERAPY section.

Something else that has come up in recent days is the more than rare occurrence of RSD patients actually popping up with Lyme Disease. If you aren't familiar with the disease and/or its symptoms you might want to check it out. Some of them; neurological changes, such as memory issues, tingling in the hands/feet, swelling and pain in the joints, pain/weakness in the arms and legs, and many more. Some of those sound familiar guys?

I doubt you will find anyone who treats patients with HBO that doesn't have a few stories of patients who come in with a diagnosis of RSD that end up testing positive for Lyme disease. Fortunately the treatment protocol is the same, maybe a few more treatments for the Lyme disease patients I am told. But otherwise it is basically the same treatment depth.

I am probably driving Phil, the technician, and Dr Spiegel crazy with all the questions I ask. I am a naturally inquisitive person to begin with but when I undergo a treatment such as this, which is fairly unknown to most in our community despite a plethora of information available, I am even more in the face of the people performing the procedures. Not just for me but for all the people who come after me, who come to me with questions.

I don't want to sound holier than thou but I take the trust of my pain community friends and family seriously. When people visit our website and read the information there I want them to be assured we have checked out the information thoroughly and stand by what we write. The websites we refer people to are sites we have checked out. The people we work with in the pain community are dedicated to healing.

Someone asked me yesterday what I was going to do if this procedure healed me completely, left me with zero pain? I said I hadn't really thought about it. I don't think they believed me. But it is the truth. I have been dealing with CRPS since I was 14. I had numerous breaks, tears, and bruises all growing up through sports. I got in the car accident in my early twenties and broke my back, among other things. Later, I developed Fibromyalgia. I have dealt with the eye issues/vision problems since I was 14 as well.

I am not complaining, not at all. I am simply saying, I have dealt with pain for so long I am not really sure how I would handle not being in pain. I would like to know. I am praying it will happen to some degree, meaning whether it will be 90, 95, or even 100% pain-free I don't know but I will gladly take whatever I can get, every inch, every % I can get. Because the healthier I am, the more I can help others with their pain issues. I know it is my life's work, has been and will continue to be.

I am trying to do everything they tell me to; eat the right stuff, rest as much as I can, take my vitamin E, D, and get my B vitamin injections. I try to swim as often as I can to keep my body active as well. Not doing laps or anything but just being in the water and staying limber. I love the water.

And I try to learn everything I can.

Ok, enough of this stuff.

Have a great weekend everyone! Go, enjoy, have fun, swim a little, rest a little, do something enjoyable, read a good book, learn something new, and share a good joke!

Peace, Keith

DAY EIGHT - AS THE CHAMBER CLOSES ...

2008-07-10T16:27:00.004-04:00

Today was Treatment Day Eight.

Some of you were wondering if you missed a day yesterday. No. I was a little tired and had to get out some stuff regarding the next meeting for the Palm Harbor/Tampa Bay Support group as well as the Orlando Group's first meeting and by the time I did that. I was wiped out.

Dr Spiegel, Susan, and many others whom I have spoken with along my HBO journey have advised me to try and keep my on-line and off-line activities to a minimum in order to get as much rest as possible. As most of you fellow CRPS patients have been told at some point, the majority of CRPS patients tend to be Type-A personalities and I am no exception. Taking it easy is not a simple thing to do on the average day despite the pain and exhaustion, not that I am able to do tons but correspondence from the RSDHope organization does keep me busy.

Plus, because of this disease and the pain I have dealt with for more than 3 decades, I have always approached my days in such a way that I have to get as much stuff done as early as I can because once I stop for the day, I am done. Getting my body, and sometimes my mind, going again is not an easy thing for me to do. I liken it to a ball rolling downhill. I have to keep my momentum going. Petra, my better half, will always be after me to slow down or sit down and take a break from doing something and I will tell her, "No, I want to finish it now." I am sure she thinks I am hyper but the fact is I am afraid if I don't get to it now, I won't be able to get to it later.

So, sitting around and getting lots of rest is extremely difficult for me. But I realize that this is an expensive treatment, that is a month of my life I am devoting to it, that my Dr and his staff are devoting to it, and I cannot waste this chance to be better by not resting, and by not making sure I take advantage of it by doing what I need to do.

Still ... I can be slow to remember this sometimes. I feel like I am playing hooky.

Yesterday I was reminded of this, the rest thing, when a friend of mine whose mom has been through this treatment for her CRPS, sent me his tips for getting the most out of it. Jason has his own RSD Blogsite where he posts articles relating to RSD/CRPS, and he and I have become friends through first, our affiliation with American RSDHope and his blog, and then second by his mom going through the HBO and my doing it, and third, he is going to be involved with the new Orlando support group down here.

The tips he shared, some of which I have already shared with you, are as follows;

- Drink anti-oxidant juices

- eat really well

- Take grape seed extract pills (300 mg twice a day) during this treatment

- Drink plenty of water, as much as you can (but not a lot before you go into the chamber since you don't want to have to take a urinal inside with you unless you have to)

- Drink not just plain water but add a "pinch or two" of sea salt, there is something in sea salt that will help this process.

Thanks Jason!

I wanted to mention a couple of things before I forget them! I know, it would be shocking for a CRPS patient to forget something. I always say I bring Petra, my SO, along with me to places as my "memory". I once had an amazing discussion about memory and CRPS patients with a very brilliant Dr. Petra, and other SO's I am sure, would get frustrated at what I would, and wouldn't forget. How could I forget these things but remember these other things? Was it because I was paying attention to one and not the other? Or because I wanted to remember one and not the other?

For me, and apparently many CRPS'ers, it seems retaining numbers or things having to do with numbers, is fairly easy. Dates, phone numbers, baseball stats, football stats, etc. But things that use the other side of the brain, ideas, faces, colors, places, directions, etc., forget-about-it. According to this Dr., it all had to with the part of the brain that is affected and attacked by CRPS. It was amazing and has helped me a lot. I now try to equate as many things as I can to numbers, to try and help me remember.

Ok, what was I saying?

Oh yeah. a couple of points to share.

1) On the question of whether divers enjoy the same benefits as people in the HBO chambers? The answer is no. They don't breath pure oxygen but rather a mix of gases.

2) It is recommended that you take vitamin E, 400 mg, after you exit the chamber each day when you are undergoing treatment.

3) I think I touched on this before but it makes a big difference when you eat something like fruit within 30 minutes after exiting the chamber. Think of it as being akin to hypoglycemia, or low blood sugar, when you exit the chamber.

4) If you want to subscribe to this blog, so it arrives in your email box directly and you don't have to come to the webpage to read it, just go to the bottom of the page where it says "SUBSCRIBE TO POSTS (ATOM)"

5) If you would like to leave a comment about the blog, please feel free to do so.

6) If you have a question about CRPS, or a question about HBO, you can drop me an email by sending it to keeths@mac.com

7) If you are a current or past HBO patient with CRPS and would like to share your experience, send your comments either to the blog, comments section, or email them to me.

8) If you haven't hugged your loved one today, please do so now.

(Petra wanted me to throw that last one in there)

Someone who happened by the blog was unfamiliar with CRPS and asked me what it was like, what it felt like. We have an answer to that on the RSDHope website; WHAT DOES RSD/CRPS FEEL LIKE?

So how was my HBO treatment yesterday and today and how am I feeling?

I feel I am progressing. I can definitely feel the ups and downs of the treatment. Ok, I couldn't help that. I can though feel my pain get worse some days and a little better others. Yesterday was a better day than today. Today my feet have been burning a lot, throbbing is higher.

It is much more difficult to track a patient such as myself because my CRPS is full body. The same held true when I had the low-dose ketamine infusion. When you have patients who have CRPS in just one limb it is far easier to track the progress of a treatment, compare the "bad" limb to the healthy ones, feel it getting better/worse, etc.

When you have it full body you can have one part of your body feel a little better one day and a different part feel worse on the same day. It is frustrating not only for the patient but also for the treating physician.

But I am in this for the long haul and I know that there will be ups and downs along the way, especially during the first couple of weeks. We are projecting 20 treatments of 90 minutes each. So far I have had 8. So I have a long way to go.

What questions do you guys have?

DAY 6 OF TREATMENT - JULY 8TH - The Oxygen Continues ...

2008-07-08T20:05:00.002-04:00

OK GUYS, I have the information I promised you regarding the differences between the HARD-SDIED HYPERBARIC CHAMBERS used in most hospitals and clinics and the SOFT-SIDED CHAMBERS that many have seen advertised on TV and elsewhere.

There are many differences and some of them are significant, others concern severe safety issues, and still others deal with the effectiveness of the different units.

I have added a new article to the American RSDHope website regarding this issue specifically with a lot of help from a wonderful website put together by Healing Chambers International (see link below).

Some of the quotes from the article include;

1) Soft-sided chambers do not provide the same benefit as hard-sided chambers.

2) Soft-sided chambers cannot re-grow bone and tissue in severely damaged areas of the body, whereas hard-sided chambers can.

3) Treatment provided in a hard-sided chamber is supported by thousands of clinical studies which validate healing; soft-sided chambers cannot provide the same validation.

4) Hard-sided chambers are designed to go to pressures that heal. Soft-sided chambers are designed to treat divers and mountain climbers en route to a hard-sided chamber.

5) Hard-sided chambers kill bacteria, soft-sided promote bacteria growth.

There is a great deal more information regarding where and how the soft-sided chambers are allowed and supposed to be sold, and what for. There is also extensive information regarding the differences in pressures as well as some pictures and graphs that are very informative.

I was floored by the differences in cost, the cost of being treated at a clinic or hospital that uses the hard-sided units is sometimes covered by insurance, although not currently for CRPS in all places. There have been a few patients I have talked to who were able to talk their insurance carrier into it and we listed an article where a company was forced to pay for it. But for many other diseases/ailments it is covered.

Not so for the soft-sided chambers, there can even be serious consequences involved as noted in the article regarding that.

It is a fabulous article and I strongly encourage you to read it. The safety issues were of particular interest to me, besides of course the facts regarding what it could or could not heal. If the soft-sided units cannot even descend to standard treatment depth for diseases such as ours, and most others, why even consider it?

I am not saying there are no benefits at all from them. I have heard from some people who say they have been helped by the. It just doesn't seem, from this article and others, that the evidence backs up is there to substantiate such claims. I leave these things to the experts though. I am just providing the information for you to decide for yourself.

You can read the article by visiting the American RSDHope website and going to HYPERBARIC OXYGEN CHAMBERS - HARD SIDE OR SOFT-SIDE?

If you would like to visit the website where the original article came from and where you can find more information, visit -

HEALING CHAMBERS INTERNATIONAL - page of the Healing Chambers website that discusses the differences between the two types of chambers.

BTW, someone wrote to me and asked my if HBO is approved by the FDA for treating CRPS how can it not be covered by insurance? Isn't it the same thing?

Great question.

It is the same as with other treatments such as the low-dose ketamine infusion. It has received FDA approval but isn't covered by insurance. basically this means that the FDA has decided the procedure is safe and that it is effective for the disease specified. It is then up to the insurance companies whether or not to approve the treatment for payment. There is often a lag between the two unfortunately.

I often wish that whoever decides these things could just sit down with patients like us, maybe spend a week living with us, learning what we deal with every day and then watch us go through such a procedure and see the difference it makes in our lives. Then compare the cost of the procedure versus the years on end cost of medications, therapy, etc. coupled with the agony of our daily lives. If the first point doesn't convince them maybe the second point will.

If only ...

That wish comes right after my wish for a machine that allows patient's to "plug" their Doctors into their bodies when they walk into their offices when they come in for their appointment. To allow the Dr to truly "feel" the patient's pain. How many of them do you think would refuse the pain prescriptions then? After they picked themselves off the floor and pulled themselves together of course. My guess is you would see a 90% drop in the "it's all in your head" diagnosis. Instead it would be "Holy cow! How do you live with that everyday?!"

Today was another good day in the chamber for me. We zipped down to 45 feet, it has gotten so easy for me. The first few days I had to do a lot of the "holding my nose and puffing out my cheeks" thing as I descended to the treatment depth. Now, it only takes me a few of them. I guess that is what happens to everyone. I could probably go diving, when I am done with this, for real. I would have to learn a lot I am sure about the various instrumentality but I would have learned part of it with the pressure.

I wonder if divers benefit from breathing oxygen under pressure when they dive?

I will find out and get back to me.

On another and last note. I have made sure to eat apple slices right after getting out of the chamber this week and have not had a headache! As I discussed yesterday, food makes a huge difference in our disease and especially when we are undergoing a treatment, and even more so a treatment that wipes you out.

Take care guys, see you tomorrow.

Peace, Keith

DAY FIVE OF TREATMENT - JULY 7TH

2008-07-07T22:15:00.002-04:00

This one will be fairly short but tomorrow I have a couple more articles to share. We had a very bad thunderstorm all day here so I was unable to get on the internet for much of the day. Now it is after 10 pm and that is the time of day when my body gives out. I know that some CRPs patients stay up very late at night and get up very late in the morning, and for others, they go to bed early and get up early, and probably some go to bed early, get up late, or go to bed late and get up early. Now I am starting to sound like a bad Dr Seuss book;

I will not go to bed at eight,

I will not go to be too late.

I will not go, you cannot force me,

I will not go, so just divorce me!

Ok, so I'm no Dr Seuss.

I was thrilled to get back in the chamber this morning. After spending three days without it, after four straight days of HBOT, I can definitely say it was helping, it is helping already. How much it will end up helping I don't know, we won't know until we are done and maybe not for weeks or maybe months afterwards. From everything I have read, some patients keep improving after they stop treatments, sometimes weeks or months later. I am all for any treatment that you can say that about!

My vision was giving me a lot of trouble over the weekend, a lot of blurriness. After my treatment today it was a lot less blurry. I haven't noticed any improvement in the actual vision in the bad eye (my left eye is 20/450) but the blurriness was much less. I am going to look into going to an opthamologist in the coming week if possible because I want to track changes in the vision.

I made sure to eat within 30 minutes after getting out of the chamber today and it helped with regards to the headaches. I had none today and we didn't change the depth, I went to about 44 feet again.

One thing I wanted to mention. Wherever you go for treatment, (of course I highly recommend Dr Spiegels' facility) make sure you thoroughly check out the safety procedure's; everything from how they put the place together to what happens when there is a power outage to the training of the people on the staff. You are placing your life in these people's hands while you are in the chamber and you need to know these things. The facility should have no problem answering any of these questions.

At Dr Spiegel's facility they have been eager to share this information with me, proud of the safety protocols, the way the facility was built, and especially eager to share the training involved. I visited one facility, which shall remain nameless, and they let a friend of mine "test" one of the chambers without even checking what he had in his pockets! Now granted, there was no One-Ring-to-control-them-all in his pocketses, but they don't know what he had in there.

Anyway, like any other procedure you have make sure you thoroughly investigate everything about it and the people involved. This is one of those instances where you get what you pay for.

I am bummed about one thing, all this diving down here and I never get to see any fish :(

I mentioned this to someone in the lobby of the clinic and she looked at me like I had lost my marbles.

Maybe I have. I have been accused of worse.

Tomorrow, I will be sharing the information on home units versus hard-sided units as well as a few quotes from other patients who are going through the treatment and/or have gone through it recently.

Thank you to everyone who has sent me emails of encouragement and who have mentioned they are praying for me. I appreciate it.

Peace, Keith