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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

New to RSD
Apr 23, 2008
I was diagnosed with RSD in Oct. 07 -- Had left foot surgery in july 07. Have great doctor here in San Diego. Tried Neurontin, but now on Cymbalta and Lyrica. Gained 35 pounds, but if it keeps my legs/foot from more damage, then it's certainly worth it. I have some leg muscle pain in both legs, but not severe. I've been working part time for 8 years and hoping to continue.
Is this RSD different for everyone? Does it always get worse, or can it stay the same? I'm pretty scared because there's some very horrible stuff I've read about RSD. I have absolutely no sensitivity to touch at all, so I'm really grateful. No pain when things touch my feet, but I've got the burning. It's difficult for me to get up from sitting position, but I just kinda go slow because it hurts my legs. Anybody out there encounter this? Also, a nerve study on both my legs shows neuropathy and I'm in the 30% category of no known reason.
Any help you can provide would be appreciated.
Re: New to RSD
Apr 28, 2008
Hi Michelle,
A HUGE THANKS for your great information -- Everybody seems so helpful and kind here on the boards.
All I'm on right now is 200 Lyrica 3 times daily, and 60 Cymbalta twice daily. My RSD doctor got me up to 3600 daily of Neurontin and it didn't work. I'm doing great lately. Still working 3 hours daily. I just have the burning/achy type foot pain and some weird soreness in my legs and knees. Not the kind where ya can't touch my feet. I'm truly grateful for my dr. Kozin here in San Diego -- He's a specialist and I wrote about him to inform RSD folks who don't know other docs who treat it. Seems lots of people know a Dr. Swartzman -- I've not heard of him.
That's pretty neat that it can calm down as years pass -- That's optimistic news. Let's see -- That's about it. To all of you, thanks so very much for your help. I really enjoy writing on this message board. Take care, Rose
Re: New to RSD
May 8, 2008
Hi Rose, the weight gain is one of the nasty side effects of Lyrica as well as the swollen ankles. I know the weight gain is also effecting you stress wise, it did me a few yrs ago. Almost 4 yrs ago, I was hospitalized and almost died from double pnuemonia and dehydration. I was a smoker at the time and when I got out of the hospital after a 3 week stay, I no longer wanted one. I lost alot of weight while I was in the hospital. After about 9 months, I gained at least 40 lbs from quitting smoking and steriods. I was so depressed about some much weight gain I started smoking again and started eating less. I've always been a very small person that only weighted anyway from 115 to 120 lbs and I couldn't handle being fat. I've always been a person who can lose weight quicker than I can gain it. So I know how you feel about the weight gain it can get you down. I don't take Lyrica, I have always been on Neurontin from the begining to now. I have on suggestion that I can make about a different type of nerve medication. You make be able to try a medication called Topamax that some take for nerve pain also. It doesn't cause the weight gain like Lyrica does. In fact, I've heard of people who have been on Lyrica and problems with weight gain that it help them lose the weight gain from Lyrica. Also they said it really curbs your appetite. Have you ever tried Neurontin and did it help?

As far as the shinny skin is concerned, it seem to happen over time or at least it was sometime before I ever really noticed it. I have a couple of fingers on my left hand and my left hand are also shinny and red at times. Unfortunately, I have alot of nerves severe on my left hand due to the fact the turn signal went through my hand. This occured when I had my car accident when I was 19. Also some of my nerves were severed when my arm was broken completely into in the same accident.

Pain wise, I think you have a good chance of it not getting much worse since you have receive early treatment. Also you stand a good chance of it not spreading. The pain from RSD seems to be at it's worse the first few yrs and then over time it seems to finally level off. At least that's the way mine has been after all the adjustments made with my medications. The first few yrs was the worse dealing with all the burning sensations and all the pain associated with RSD. In the last yr or so the pain and the burning sensations are noways as bad now as it was at first. I still get burning sensations in my feet and in my neck but not as often. The pain gets the worse in my shoulders and my left arm especially when the weather changes. It also gets real bad if I use my right arm alot, like cleaning the house to much or working in my flower bed to much. I have to limit both of these activities if not it will put me in alot of pain the next day. I can't do a whole lot of walking or standing long periods of time due to my legs will really give me a hard time. I recently went to NYC with my daughters and all that walking really killed my legs. That was well worth it though to spend the time with my daughters. My legs will get real numb and my knees and legs will hurt real bad that night.

Sorry for such a long post, here's a list of medications I on: Neurontin 3600 mg a day, Norco 10/325 mgs. 4-5 a day, Soma 350 mgs. 4x a day, Celebrex 400 mg a day. Maybe you can try changing the Lyrica to another nerve medication that would help with the nerve pain but not cause weight gain. Maybe you can get you doctor to give you some samples of Topamax to try. There are also alot of other medications as well that help with nerve pain that you can try. I hope you can find a solution soon because I know how depressing weight gain can be. Also remember try not to stress to much about the RSD getting worse because you really have a good chance of it not getting any worser than it already is.
Re: New to RSD
May 8, 2008
Hi FayeRaye,
Thanks soooo much for answering all my questions. That's really nice of you and it does make me feel lots better. You gave lots of optimistic answers so I'm very relieved. I was especially happy that my RSD might settle down in another year or two. Wow, that would be the greatest gift I could get.
When I was first diagnosed, I was on tons of steroids, but then Neurontin -- It kept increasing up to 3600 a day and it wasn't effective. So, my doc then offered Lyrica and that's been increased. When I see him on the 16th, I'll ask him about Topamax.
I also love to garden -- We have about 20 roses that I just LOVE -- Seems there's never enough time in the day, but I try hard to have a little bit of downtime. I've missed alot of work, and sometimes I think about asking mhy doctor about getting disability - What's your opinion of this? It just seems I'm lacking the energy to keep up our home, work, etc. Sometimes I'm so truly tired that I can't hardly keep my eyes open so I sometimes nap in the afternoon.
I'm surprised that there's not more folks on this healthboard.
Gotta go for now, thanks again.
Rose :angel:
Re: New to RSD
May 19, 2008
Hi Michelle,
Yeah, I cannot believe how I feel with this heat -- I made a mistake, I meant to say that on Monday the temp was 66, and by Friday is was 96. The past 2 days I've been in quite a bit of pain in my feet and both legs. I'm continuing my meds too -- Nothing different exxcept the very hot, dry hot days. My weight gain is horrible -- I began in a size 10, now I'm literally a 16 -- But, I realize these meds are very important. Somebody here on the boards recommended that I talk with my doc about Topomax instead of Lyrica. I hurt alot, but I still have no sensitivity to touch and everything I read about RSD is that everybody has sensitivity to touch -- Is that true with your experience?
I think I might need to talk with my doc on Wednesday (I've got an appt at 10:45 with my RSD doc and an ortho surgeon) about something to help me with increased pain.
Gotta run for now, I hope you day is good tomorrow. Rose
Re: New to RSD
May 22, 2008
Hi Michelle,
You are so kind. My RSD was diagnosed September/October of 07. I got up to 3600 of Neurontin and was still burning/hurting so I'm on Lyrica since April.
My doc appt yesterday was ok, thanks for asking. I have neuropathy in both legs and RSD. Unable to have surgery to fix my toe -- Toooo risky and I do trust my doctors. My next appt is in 3 weeks and we will discuss options cuz I told him I'm hurting pretty badly and Lyrica and Cymbalta don't seem to be enough. Are you on any "pain" type meds? I'm really sorry, but I have no memory either (I thought it was the meds, but you mentioned it's the RSD) so don't know what meds you are taking. I take Vicodin lately to help. How are you feeling lately? If I remember right, you've had RSD for somethhing like 20 years, right? And, you're not in a wheelchair, right? I have soooo many questions, hope thats ok. Sometimes I get scared to death -- Actually, when I burn alot, that's when I become the most afraid. It's late so I need to run -- Take care and I'll wait to hear from ya. Rose
Re: New to RSD
Jun 3, 2008
I was diagnosed with RSD about a year but i had it for about 2 1/2 years and i was diagnosed when I was 14. It was hard because I had it in my right foot and for alot of school I was always in a wheel chair. I know how u feel but I got a stimulator in my back and it works wonders. They put me on Cymalta and Lyrica plus a bunch of pain meds like vikadin and percaset (sorry for spelling) but I was always overweight so I do not know if that contributed but I suffered alot and went so at least over 5 different doctors because my mom did not want to believe them that I have RSD and when we went to the pain clinic they said if we would have found it 2 years ago it would have been better and my mom blamed herself for a while but know its starting to get back to normal but I wish u well coming from someone suffering with it to and there is light at the end at the tunnel.

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