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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Thank you for such a warm welcome.I feel better already.And a big thank you for responding to my plea.I just wasn't sure what else to do.I figured the best way to find out the info I needed was to post to the people who would know(that would be you).I know that I do have central pain syndrome,and there are many signs and symptoms of that and the RSD that are the same,but having been Dxed with a bunch of other syndrmes already, I know that it is possible to have more than one syndrome at a time.There is just no logical explanation for this bizarre deformity in my knee and the swelling in my entire right leg.I haven't actually been able to DO anything so i know that it was not injured by some sort of accident or something.I also have like a kind of a lump behind the knee.It is quite hard whan you push on it.I don't know if it is displaced tissue or what.My leg is just so weird,when you look at both of my legs at the same time, they don't even look like they belong to the same person.I finally got a referral to a PM doc and I am seeing him on friday.I saw this same doc last spring for trigger inj in my upper shoulders(thats a whole other story,we wont go there).I am taking neurontin 3000mg a day and it dosen't seem to be helping at all with the pain.I have been reading alot of articles on Keppra,does anyone here have any experience with using this drug?I would like to go off the neurontin(been on it for almost three years at various dosages) and give the Keppra a try.I am also taking oxycontin 20mg twice a day and taking Robaxin for my upper shoulder mess.I have so many areas with varying(sp?)levels and types of pain.I noticed right away after my surgery that narcotics don't seem to make a dent in the neuropatic type of pain that I am having.I am really hoping that the PM doc has some better ideas for me.What do you take for the RSD pain?(open question to anyone who cares to respond).Well again, thanks for the kind words and your responses.It's really nice to know that i am not alone. Take care, Marcia
Hi Marcia,
I don't know anything about keppra, so can't help you there. I take Baclofen for muscle spasms/cramping (although I've cut down because it makes me feel like a zombie). It also acts as a neuro pain blocker. Since the RSD affected my BP so drastically I also take clonidine which is often prescribed for RSD for pain. Then I take nortriptylene (pamalor) for depression and pain. I use demerol for break through pain. The regimen works for me. I also go to PT 2-3 times per week and I get stellate ganglion blocks as my RSD is in my left hand and wrist. I have had definite improvement with the whole package, but I still have a ways to go. My RSD is in stage 2 which makes it more difficult to go into remission, but I know I can still improve. My goal is to be able to make a fist. I stil have about 1 1/2 inches to go, but since I started with an opened claw I'm encouraged.

I really hope the PMD you'll be seeing on Friday can help you come up with a plan. Actually, that's one thing I forgot to mention. When I first saw my PMD I insisted that we write out a plan, an algorithm of sorts. I didn't want to leave his office with things just hanging. I wanted to be able to call and say "this isn't working, let's go to the next step" and already have something in place. I know this is idealistic as RSD is a bit unpredictable (LOL), but at least I felt more secure that I would get thoughtful care. It has worked so far.

I really am sorry you are having to cope with so many issues. I know it makes things harder to sort out and treat. Hopefully you'll get headed in the right direction on Friday. Please let us know the outcome.

Wishing you the best,
[SIZE=3][COLOR=RoyalBlue]Hi Marcia,

Good luck on Friday. I hope the doc can do something to help you. I don't know anything about Keppra either. I have a morphine/bupivicaine pump for my pain. I also take Vioxx, Zoloft and M.S.I.R. for breakthrough pain. Let us know how you do on Friday.

Sharon :)[/COLOR][/SIZE]

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