Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 04-01-2009, 11:58 PM #1
Imahotep Imahotep is offline
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One of my doctors said the effectiveness of sympathectomies and amputations are about the same; 10% get total remission. The rest are rarely helped much and a large number have the RSD come back "angry". Get a second opinion from someone who is well versed in this.

It's said the only pain worse than RSD pain is phantom pain from an amputated limb.
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Old 04-02-2009, 01:57 AM #2
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i had a SCS put in about a year after being diagnosed with RSD... the trial worked great for me, however the perminant one caused my RSD to spread and then failed to give me the pain relief afterward. Needless to say I had it removed about a year and a half after having it implanted.

If you scroll through a couple pages of topics on here there are some surveys I posted from a bunch of different people with RSD that i took for information for a paper I was writing (That as well is posted on here some where). But one of the questions on there asks about the treatments/medications they've tried. That may help you out some.
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Old 04-04-2009, 05:00 PM #3
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Hi New and Lost Jennelle,
Welcome to Neurotalk and a large family of compassionate, informtive, and friendly group. I have learned so much here, and hopefully have encouraged others. I know I don't feel misunderstood or alone. Most of us had no idea what RSD was or how our life was going to change. Sure, we all miss our good health, but have learned many ways to cope with disabilities and pain. I agree with all the above comments regarding SCS and Sympath.
I have been helped by physical therapy and massage therapy. I had frozen shoulder following surgery (really rsd, but wasn't dianosed for 4 years) Started therapy right away to get use of my left arm. took 100 massage therapies followed by 100 p.t. I paid for the mass. therapy, felt it would loosen up and help speed up recovery of range of motion. I never regret that. I have full use of arm. Then a few months of relief followed by sudden frozen shoulder in right arm. (They told me that might happen) More therapy.
Full use of right arm. Then left hand frozen from injury while water skiing. Wrong diagnosis. Changed Drs. and diagnosed with RSD in different state. Started therapy in hand and got partial use. It's permanently partially paralyzed. Have full body now. Both feet started to turn upwards, toes. Dr. had me start water therapy and in a few months, my toes were touching he ground again. My Dr. is a neurologist, psychiatrist, and pharmacologist, so he basically manages my pain and rsd.I've been seeing him for 5 years and it was this smart Dr. that told me my rsd started 13 years ago following my benign breast surgery. The next day my arm swelled and shoulder froze up. Not even the Rehab Dr. and physical therapists recognized the rsd. We desparetly need rsd education in this country. Every state needs new laws passed. I attended the national rsd annual meeting here in Scottsdale last week. There are 50,000 new cases of RSD being diagnosed every year now!! We can't afford for people to have 4 years pass before being properly diagnosed. More and more children and teenagers are getting it. If you go for water therapy, the water needs to be at least 86 degrees. Cold water is not good for us or ice.
I'll pm you an evening when I'm feeling a little better and share more information that has helped a lot of us. At the top of the page is a 4 page list of suggestions that Mom in Pain has started with a lot of good suggestions from different ones that has helped us deal. You can also read the introductions to learn more about each one of us. It takes time, but the more you can read, the more you can learn what helps us and avoid things that make our condition worse. I'll post some information about the annual conference soon.
Please take care, loretta
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Old 04-04-2009, 07:10 PM #4
SandyRI SandyRI is offline
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Dear Loretta

I have been keeping an eye on the RSDSA website for any information that may have come out of the Scottsdate conference - especially new treatments recommendations. Hopefully it will be published soon.

Sandy
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