CRPS - HBOT update

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?

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

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

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?

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?

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

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

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?

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

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???

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?

"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?

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?

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

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 ...

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

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

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!

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

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