Your still new into this... Time is of the essence! Do NOT GIVE UP HOPE! You are so lucky to have been diagnosed so early!

Depending where you live... Look at the RSDA site, they do list doctors.

But, if nothing else, you need to see a pain management doctor ASAP. you will probably want to go to a pretty large city, maybe to another state if no large cities near you. Even try a large teaching university. You need to look for anesthesiologists that specialize in pain management. Many of their websites will list RSD or CRPS as something they treat. Then call them up and ask to talk to their nurse or physicians assistant if they will let you, and see how many cases they have seen.

You should gather up all your records of your treatment. Might as well start a notebook for them. The new doctor will want them. Try to get the doctors treatment notes as well as test reports.

Occupatioal therapy helped me a little bit, but only when I got into the OTs at Cleveland Clinic. Everyone else really did not know how to treat it properly. They set me up with a program I still do at home, several years later. PT never helped me, in one case, actually made mine spread.

RSD is bad... But you will adapt.

The second best thing you can do is learn about Mindfulness meditation. Another member here, fmichael, gave me the name of a book that changed my entire way of coping with this. Break Through Pain by Shinzen Young. Under $20 on Amazon. Pain meds don't work for me... And without that book I don't want to say where I would be.

Best of luck to you.
Juli

Hi Juli,
My podiatrist has found a new neurologist/pain managment doctor in nj as of yesterday. I called and got an appointment for 10/27. Right now I'm fighting to stay on disability because my current neurologist has not returned requests from my insurance company for a telephone conference to continue my disability claim so as a result I am "under peer review". He is confident that together we can get it resolved and then get aggressive with finding me the right treatment. I considered myself lucky in that regard, but I can't help feeling overwhelmed. For that neurologist and his staff to be so unempathetic and just plain cruel has really stopped me in my tracks. You know, I never had a problem in the past fighting doctors to get the right answers when it came to my four boys, but now that its me it seems like I have stepped into the twilight zone!

Anyway, I will look into ALL your advice, especially Philly. My UPS route was in center city Phila. and I am very familiar with the hospitals....thank you!

Darcy