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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I have had RSD for 3 years now. It took 3 months to discover what the problem was, despite asking my Dr. if it could be RSD. "NO" I was told. Another Dr. figured it out. It started with a sprained right ankle. Now I am either bed ridden, or in a wheelchair for short amounts of time. (still fighting for home health aid) I have all I can do to feed and bath myself, much less getting out for meds and food. If my foot is not elevated, it fills with blood, turns purple, and the pain keeps increasing until I elevate it again. I have not been able to put any weight on the ankle in the 3 years. I am unable to drive. The RSD has also spread into most of the rest of my body, burning muscles and very painful joints. ( I could fill this page with symptoms!) I went through the normal treatments, without any luck in reducing my pain. Lidoderm patches do help some. Depression, anxiety, zero quality of life and not wanting to live with this pain all go along with my RSD. Good thing I live in south Fl, as the cold bothers me real bad!

OK, the point I wanted to make here is that I had been started on Nueronton as soon as I meet with a pain management Dr. I could not deal with the side effects. The Dr that performed my lumbar blocks had me switch from Nueronton to Trileptal, 100 mgs 2x a day. Recently we increased the Trileptal to 150mgs 2x a day. I noticed an increase in pain. My pain runs between 7 -10 out of 1-10. One day 2 weeks ago, I was waiting for a refill of the Trileptal. The first day without it, I noticed a reduction in pain. the pain in my foot that kept me from bending my toes for years was almost gone. My pain was less all over. I have stopped the Trileptal now, and my pain is not reaching the heights it was. This is not to say that the problems with needing to keep the leg elevated has gone, or that I am not without pain. I still live with an outrageous amount of pain, but it has reduced my pain enough that I will never take trileptal again, or other meds like it!

Bill





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