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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Dianne,

I don't mind your questions at all. They're just really hard to answer because it's been such a long time. I now have RSD in my legs and my left arm.

This started when I was 15 after I broke my left foot. After it healed, it still felt broken and then my leg started to turn purple. That went on for a couple of years, but I guess it wasn't too bad until I hurt my left knee. I went to P.T. for that for a few years and then had surgery and didn't recover from that and nobody knew why. Finally, I went to a doc in Manhattan and he knew right away that I had RSD. Since then, I've had 9 more surgeries on that knee. My doc thought that if we got rid of all mechanical irritants, I would have the best chance of getting rid of the RSD. This was the thinking back then, at least. I had a lot of blocks done. Then, I decided to have a sympathectomy which was a WASTE of time and pain. That was one of the worst surgeries I've ever had and it did absolutely nothing for the RSD and it left me with side-effects, like my left foot doesn't sweat anymore which is horrible because it is extremely dry and cracked. It also made my temperature control system even more out of whack than it was before the sympathectomy. I definitely DO NOT recommend the sympathectomy.

After that, I did more blocks which did nothing. Then I found a new pain doc who put me on a bunch of meds, you know the ones, Neurontin, Zoloft, Paxil, Elavil, Clonopin, Baclofen...none of them really helped. I also had the spinal cord stimulator trial, but that didn't help me either. The one med I stayed on for a few years was M.S. Contin. I was up to taking 600 mgs per day until I decided to have the pump implanted. That is the best thing I have ever done for the RSD. It has helped me so much, not in the pain relief. I feel that the pain is about the same as it was when I was on the oral meds. But, as I have learned since coming off the oral meds, morphine is very depressing to your system. The meds in the pump go directly to the spinal cord and not through the system. After I had the pump implanted and got off the majority of pain meds, I was so much happier. I didn't realize I was depressed until I was happy again. That was my experience with it, anyway.

I hope this helps you. It's hard to remember everything because it's been such a long time. Please feel free to ask anything you want. If I have an answer (or can remember that far back), I'll answer you. Good luck at your doc's appointment.

Sharon :)





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