Originally Posted by catra121

I think it's definitely important to see someone who specialized in CRPS and is very familiar with it. Unfortunately sometime you just can't tell until you go in and speak to the doctor. Some people say they specialize in it and then you get there and they tell you something like, "RSD doesn't spread." or "RSD can only be in a hand or foot...not anywhere else." In those cases...even though their literature SAYS they specialize in it...they obviously just are listing it with a bunch of other things.

Typically...when looking at a treatment plan you are going to need a plan that involves multiple doctors. I think neurologist, pain management, and physical therapist are fairly typical, but others find relief from chiropractors, physiatrists, general practitioners, and others. What works best varies from person to person and depends a lot on who you personally feel most comfortable with.

Physical therapy has been really key to my treatment and right now I am working with a fabulous physical therapist who has been VERY helpful in getting me back some function. Neurologists were not especially helpful...but that is probably because I never got to one who was knowledgeable about CRPS. Pain management doctors are key for getting your pain under control and manageing your medications, performing blocks, recommending other procedures, etc. My general practitioner has been wonderful for me right now in helping me treat some of the other symptoms that have come with the CRPS (dizziness, blurry vision, balance problems, etc). She's also very compassionate which is something I needed after a lot of bad experiences and getting bounced around from one doc to the next.

But it's definitely worth a 3 hour drive to see someone who is good and knowledgeable. if you aren't confident about your ability to drive then see if you can have someone else go with you.

Good luck! I hope you are able to sort it all out and find the answers that you are looking for.