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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

[QUOTE=numbing hands;3124238]Karen,
As i was looking for some of the old posts and learned that you had rsd in full body. Would you mind tell me how your rsd started and spread and how fast they spread? What kind of treatments help you and what not?
Hope you feel better!

*Gentle Hugs* Hey Anita. I got RSD from an injury at work to my left knee. It was in my left knee/lower leg/foot to begin with. This was Feb 2003. By April it had gone into my left hip. In July it was in my right foot and Aug it was the whole right leg and hip. Between then and Jan 2004 it went into my arms. It took just 11 months total for it to spread. This might be kind of long, so I'll apologize in advance. I'm making sure I cover 4 1/2 years worth of what works/what doesn't for you. :D

When it began I couldn't use my left leg at all. Even the slightest pressure on my big toe sent my pain spiralling out of control. I eventually got into PT. WC only cleared me for 6 sessions but in that time I regained the use of my leg and was able to walk on my own and put my crutches aside. They did PT in the office and 3 of those 6 sessions was pool therapy which is what I believe helped me a lot. For some reason the massive swelling in the left leg suddenly stopped in May which was 3 months after the RSD started, after I had gone to PT. Weird but true! :) Since then I've only had minor swelling in my legs.

In Aug of that year I was seeing an Ortho and he sent me back to PT for 12 sessions. They found I had some atrophy in my left thigh. This time PT absolutely killed me pain wise and I couldn't get through even one session without my pain screaming up the scale to 10+. So, the therapist there dismissed me after 8 sessions because it wasn't helping, but it did reverse the atrophy in my thigh. Luckily I've had no more atrophy since then. I measure my legs from top to bottom on a regular basis to check for it.

As for meds, I take baclofen and vicoden. I've been on every antidepressant you can name, just about, and they all gave me horrible, nasty mood swings. I've been on Neurontin which turned me into a monster it changed my mood so bad. I tried Cymbalta and it made me mean and also gave me sharp pains in my stomach. I tried Lyrica recently, my doc gave me some sample bottles, and it worked! It helped stop the electric shock feelings, I think it even decreased the sweating too, it helped my pain level go down a little. Unfortunately I can't keep taking it because I can't afford to pay for it, but at least I know it does help me.

Using a TENS unit killed me. I couldn't even use it on the lowest setting without my pain going way up. I hated that thing!!! UGH!! A gentle massage from hubby helps me to relax and also helps the pain level when I get pain that feels like it's in the bones and way down deep in the muscles. A nice hot soak in the tub feels good too. Reducing stress has helped keep the pain level down. Meditating when I feel I can has helped me a lot and also helps reduce the stress level. Soft music, I love Celtic or Native American music is very relaxing. I try to keep as busy as I can, doing my hobbies, reading and writing. It helps me to not focus on my pain and really does work to keep the level down overall, well most of the time. There are those days where it's just bad from start to finish!

Well, I think that about covers it. *phew* LOL Anything else you want to know just ask!

Jon, from all that I've read, bone scans are like flipping a coin. There's a 50/50 chance of being positive or negative. The other who sent me for the 1st one even told me before I went that even if it was negative it didn't matter because I did have RSD no matter what. I believe he just sent me for it to check on the bones to see if there were any changes going on since it was in both hips/legs/feet at that point. It's the same reason the Neuro sent me for the 2nd one as well. I wish I could get another one done now, 4 1/2 years since the beginning to see if there have been any changes, especially in my legs/hips. Another test I wish one of the WC docs had thought of is a thermogram. That would've been the best test because it would have showed the coldness in my legs and left no doubt about having RSD. I wish I had my results like that. How did you get a cd?


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