Saturday, December 3, 2011

Books on Pain

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 Some of the info may be out of date now but most of it is very good info.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,


Tuesday, November 22, 2011

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

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

Radio Show - National Awareness Month 2011

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.

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.

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


American RSDHope

Saturday, August 27, 2011

How many Americans Suffer from Chronic Pain?

One Million?

Five Million?

Ten Million?


Fifty Million?

No googling the answer now. No cheating!

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,


American RSDHope

Wednesday, August 17, 2011

American RSDHope launches new site!

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!

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

Monday, August 1, 2011

Pain is Tiring

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?


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

Monday, July 25, 2011

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

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