Tips you told us
from your experience of RSD/CRPS

Controlling your own situation

From Mary (Maryland, USA)

In terms of what to do-
First of all, get a good practitioner who really knows what he is doing. That takes some research but don't be afraid to ask how many patients they've treated with RSD, what treatment approach they use, if a multidisciplinary team is available, if they are familiar with the current guidelines regarding RSD treatment. Also check the doctor's background and certification, if any, on the web. You can also find out if there are any complaints or actions against him/her. I have run into many doctors who claim they know all about RSD, yet when I went for treatment, it was a different story. I've run into a couple of patient doctors who didn't mind rotating my medications or trying new combinations. I don't believe that anything is 100% and that certainly goes for medication. You can get a comfort level but I don't think you can make the pain go away completely. If you don't get real good relief from neurontin, there's always others like depakote and topamax which work better for certain folks. I maxed out on neurontin and found topamax to be better. I have been using that in combination with vioxx and methadone. I think the longer acting drugs are better than the shorter acting especially in terms of regular dosing and effective pain relief. I don't like to carry drugs around with me all of the time so something that lasts about 12 hours works well for me. I can usually do my errands, etc. and be back well before I have to dose again. I've really had to restructure myself emotionally and that takes some work. I'm pacing myself better, laying down when I have to, not trying to change the world. Most of all, I am trying to make time for enjoyable things when I can function at my maximum.