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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


It, unfortunately, sounds like RSD. Did you bring that up to your ortho? It's really sad to say how many doctors aren't knowledgeable about RSD. It's really sad actually. What you have described sounds just like RSD...especially the tingling and burning. I totally believe you about the pain. Doctors, when they don't have a clue, like to accuse of faking the pain or being a malingerer. I have only been dealing with this for about a year and a half and already, I have learned things that my doctor has just blown off. Like I said before, the best thing you can do for yourself is to be informed. When I was diagnosed, I asked my doctor if she had any information about it that she could give me. She told me that I could just look it up on the internet. Really!!! Here is a doctor who deals with this on a daily basis and she doesn't have any information that she can give me on it! I am trying right now to start a support group for people in my area. I started a Facebook page, the page name is RSD Northern Indiana. You can check it out if you want to. Anyways, I'm trying to make it a page to where people can ask questions, vent, or just communicate with others in the same boat. I have been putting out a question of the day for people to answer. I just started the page so it's very small for now. I'm also trying to start a support group for people in my area. So many of us feel isolated and feel like nobody understands. They think because we "look" fine, that we aren't really sick.
Anyways, don't be surprised that when you go to this new doctor, that they are going to try to help you to "live" with the pain. All they can do with RSD is try to find what drugs or treatments they can do to help lighten up the pain. I have never had the pain completely taken away but the meds I take do take some of the edge off the pain. I take Gabapentin and that helps TREMENDOUSLY for me for the tingling pain. They also prescribe Lyrica for it. One thing you will find is what may work for one person, may not work for you, and vice versa.
Hope this helps you out some. I will try to keep watching for your posts and keep me informed on how your appointment goes. I will be keeping you in my prayers.
As you know, I was recently diagnosed with CRPS. The pain management doctor gave me Gabapentin and Amatryptaline, which I thought was working because for a whole week I had almost no pain, which was wonderful. However, yesterday all my symptoms came roaring back in full force and even the Gabapentin doesn't seem to be helping it much. How could I only get 1 week of relief? Was that 1 week just a lucky fluke and not the Gabapentin at all?

I'm just really sure what to do at this point. My doctor wants to try a sympathetic nerve block, but I'll have to wait a while for that because all of this is attached to a workers comp claim and the CRPS has not been allowed on my claim yet. It will take sometime for that to happen. In the mean time I am just trying to figure what I can do to get by. I was so happy when I had that good week after starting the Gabapentin, and to have the symptoms come roaring back is so very disheartening.





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