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 02-18-2007, 09:48 PM #11
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BroadwayBaby BroadwayBaby is offline
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The first thing my doctor said was that it looked like cancer and I'd probably lose my leg.
Obviously, I panicked. When he said RSD instead, I was relieved - foolish child who didn't understand what that meant that I was. The doctor was very clear - if treatment was aggressive and they hit on something that worked, my chances for remission - he always said remission, never cure- were good. The first therapies that I tried were nerve blocks and epidurals, then a TENS unit, PT, and an arthroscopy to check for any physical problems.....
The nerve blocks gave me relief for about a week each.
Nothing from the epidurals or TENS unit, and PT made things worse. The arthroscopy made things spread.
My doc gave me narcotics for the pain, and it helped, but I hated taking them, because they made me fuzzy.

I was lucky - about a year in, I went into spontaneous remission. I was thrilled.....until it came back with a vengeance about 6 months later, and hasn't let up since.

it wasn't until 4 years into my diagnosis that I got onto Neurontin, which has helped me with pain control quite a bit. To this day, every doctor I talk to is pretty clear on this - you have to be aggressive with treatment in the early stages and try for remission - it becomes harder as time goes on, and the damage can be more extensive as time goes on. I know that sounds bleak, but you CAN reach remission. We're all praying for you!
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