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Research, results and remedies

One of the most important things about dealing with any kind of health condition is deciding how you want to deal with it. That sounds like an odd statement of common sense and random babble. It's one of those sentences that, after I wrote it, I went "What exactly do you mean by that?" What I mean is that when you have any problem, there are values and reasons for how you handle the problem. As a person with pain, for example, I can choose to learn as much as I can about what's happening to my body, find a good doctor and let them educate me and hope they can tell me enough to make educated choices or decide not to make educated choices and leave the control up to someone else. Anyone who knows me at all well should know that the only acceptable choice for me is the first one, becoming as educated as possible about what's happening to me. I do this with anything, pain, anxiety, hypothyroidism or heart rate issues. I did this when I was a teenager with blindness, learning about the philosophies and history of various movements in the blindness community. I made choices based upon what I learned. When I got my guide dog Julio, I read a ton of information about guide dogs and guide dog schools to help me decide if I wanted a Guide Dog and where I wanted it from. Unfortunately, right now, much of what I need to understand is how to deal with the pain of Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy.

I wish I didn't need to know most of what I know about this disorder, but since I do, I try to follow the research, or at least articles about that research. I try to become as literate as I can toward health information, and I choose my sources of articles carefully. I truly try to understand what the research says, and, if possible, understand how it fits into my life.

I've read about a few breakthroughs in our understanding and treatment of chronic pain, and more specifically, RSD/CRPS. I'd like to share these articles with you and add my own commentary and questions. Since most research in professional journals can be somewhat tricky to get to, since journals often require subscriptions, I'll link to articles about the actual study. Most of these articles will cite the article if you have the access and interest in the journals in question.

The first study describes some fascinating
changes in the brains of people with RSDS/CRPS
The article explains that in the brains of people with RSDS/CRPS, emotion, skin temperature and pain have all gotten mixed up and jumbled. I have to admit that my understanding of neurology isn't great, and though people have tried to help me understand the layout of the brain, I don't really understand how all of this works. However, I do feel that these results are pretty accurate. We've always known that in RSDS/CRPS there is a change in temperature and aggrivation of symptoms if there's a lot of stress or anxiety. Unfortunately, that's often been used as a way to accuse the patient of having pain that's "all in their head", and saying it's just psychological in nature (I've read that it can be diagnosed as a somatoform disorder). That's not to say that a psychological problem isn't legitimate too, it's just that sometimes not everyone sees the world, or the patient, with compassionate eyes. Studies like this give me a small amount of hope that maybe someday we will be able to get rid of this life-sucking syndrome.

The next study is reported on the How to Cope with Pain blog, a site which I frequently link to because there's always something interesting, challenging or inspiring to write about there. This post is no exception. The post
How Practicing Touch Can Help Pain
describes how training tactile discrimination can help people with RSDS/CRPS. reduce pain. This makes sense, especially given the study I described above. In this study, patients who were taught to discriminate between the feel of a pencil tip and the eraser reduced their pain. The thought is that there are skills which become disrupted by chronic pain; knowing the right side from the left side, or being able to know what you're feeling with the effected limb. One treatment uses mirrors to allow a patient to move the unaffected limb and trick the brain when it sees what it thinks is the affected limb moving without pain. So, for someone like me with the left foot and leg affected, moving the right leg and seeing it in the mirror would make the brain think the left foot was moving painlessly.

I have to admit I've always felt some resentment that, as a blind person, I couldn't use this new treatment. But with the newest treatment, tactile discrimination, I feel pretty excited that there could be something I could potentially use to help get my brain to unlearn the pain.

Finally, I read an article, which, while not specifically about a research finding, does describe non-drug treatments for chronic pain and describes the experiences of people with chronic pain.
Drug Free Remedies for Chronic Pain
are important because they help the patient to feel more in control of their experience of the pain. I know that I have benefited form some of these treatments and I want to learn about many more.

I hope this look at the research has helped to enhance your understanding of chronic pain and specifically Complex Regional Pain Syndrome. Knowledge is power and the more we know, the more we can find solutions to these ongoing problems.


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Dec. 6th, 2008 06:52 pm (UTC)
Research Results
I also have RSD, and have landed these sources that you mention above. Each of them are also my favs. You do an excellent job of presenting the subject of the articles to your readers. I am not an advocate of medications, although know they are important at times. IN fact, I have to use the breakthrough meds when the flares get too bad. I appreciate your ability to put all of these articles together in one place, and am going to send your link to my pain group. Thanks for a great article!
Dec. 8th, 2008 07:50 pm (UTC)
Thanks for the links! I know exactly what you mean by taking control. I was very blessed to find an extraordinary doctor who always took the time to talk with me, and then to find a physical therapist who specialized in CRPS.
Have you read this book? Living with RSDS: Your Guide to Coping with Reflex Sympathetic Dystrophy Syndrome by Peter, M.D. Moskowitz and Linda Lang
I highly recommend it! (BTW, if you don't mind my asking, do you read Braille? When doing work for software and Section 508, I learned that many blind people no longer read Braille, so I was just wondering. I hope it's not too stupid a question.)
In the tactile realm, something my PT had me do was to rub my knee with a rough sponge (like a loofah) to try and desensitize it. I think it helped, though your mileage might vary.
Dec. 15th, 2008 07:28 am (UTC)
Thanks for this post, Nickie! I hadn't seen all of these, so it was great to have you neatly organise them here.

I agree that knowledge is power and one of the most important things we can do for ourselves in working toward solutions for the sometimes mystifying CRPS/RSD.

I will enjoy reading about the non-drug pain treatments especially as I'm very concerned about the lack of treatment options I've been offered other than medications I cannot afford and are not covered by my province's medical plan, where I live in BC, Canada - also because of medications not being healthy, ideal things to have to use, of course.

Thanks again for keeping us posted on these great links!
Feb. 7th, 2011 07:27 am (UTC)
Introducing myself :)
Hey just joining, glad to be here! I'm Aliya and I am inspired by my near death experience, I'm a fan of working and being wholesome :)

I've been involved in some other forums and have uncovered this spot to have substantially more effective subject matter, so it can make sense to eventually post!

BTW where is the option to change the little picture thingy like some people have, I like it but can't figure it out haha
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