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Old 05-12-2010, 02:42 PM
AintSoBad AintSoBad is offline
In Remembrance
 
Join Date: Mar 2009
Location: Eastern PA.
Posts: 1,143
15 yr Member
AintSoBad AintSoBad is offline
In Remembrance
 
Join Date: Mar 2009
Location: Eastern PA.
Posts: 1,143
15 yr Member
Default

I wish I had an answer for you that's better. Few of us go into remission that's permanent,
and, for most of us, the rsd/crps can spread, and eventually go full body. I've had rsd, since '83, and for the first several years, it was limited to my spine, between my shoulders, and up my neck, causing severe headaches and arm pain, which was also diagnosed as Thoracic Outlet syndrome. That's all still there, but the RSD has spread to full body, and all that can be done (for me) so far, is "Manage" this bear the best I can.

We've got to keep moving, (especially where the RSD is).
Find what meds work the best, (I've been on a "cocktail" similar to yours, but I take methadone as the main pain killer.)
You must also recognize the psychological effects, and it's important that at least one of your doctors is a psych, of some sort, specializing in pain. At least until you've learned how to cope.

I hope someone here can give you some positive reinforcement. I'm sorry to say that for me, and most that I know, it continues to spread and rather than use the word "worsen", I'll say "change"....

Go to www.rsdsa.org, and if you can join that site and get their newsletter, and some brochures. This will assist you in explaining both to yourself, and other's what's going on.
You've damaged a nerve. Consider nerves to be like an electrical system with circuits and wires, and your brain as the controller. The nerve damage is a short circuit, which can spread around, and affect the controller (the brain). The end result is pain, changes in temperature, your autonomous nervous system "doesn't know what to do". For example, A cool breeze may cross you, and instead of your pores constricting, you may perspire. The opposite of what should happen. This may or may happen, depending on when it gets to the 'control' center. Your hand, or affected site, may become mottled and clammy, even sweaty. Odd perspiration and hair growth or loss may occur.

Everyone is different. Keep the Faith, and be sure you have the best doctors!

Wishing you the best.


Pete
asb
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