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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Jiliebean and welcome.

Wow! You've really been put through the ringer! I don't know that I have much helpful advice for you as I'm not much of a med taker. When my RSD (left hand and wrist) first started I took baclofen to help with the spasms and cramps, clonidine to help with the pain and burning, and nortriptylene to help with pain and depression. I used demerol for any breakthrough pain. Now I'm not on any meds. I also tried zonegran for a short time (it's kind of like neuROTTEN), but I stopped because of the brain fog.

What other things has your doctor tried to control the RSD? Have you had any blocks? The blocks and physical therapy helped me a lot. In fact, the blocks are what allowed me to go off the meds.

As far as spreading, yes, RSD does spread. I have had hints of mine spreading into my left foot, but somebody (actually several somebodies) gave me the great advice of taking antioxidants - specifically grape seed extract - to help prevent the spread. It has really helped curtail the spread into my foot. In fact, I stopped the grape seed extract for 2 weeks to see what would happen and I started getting more burning in my toes. This is all anecdotal information, but I know other people who it has helped as well.

I'm glad you felt comfortable venting here. It's a great little community, a lot like family.

I hope you find a great doctor. I know that can be a challenge. Hang in there!

Take care,
Julie





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