Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 09-13-2011, 06:38 PM #7
daylilyfan daylilyfan is offline
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Join Date: Oct 2006
Location: ohio
Posts: 405
15 yr Member
daylilyfan daylilyfan is offline
Member
 
Join Date: Oct 2006
Location: ohio
Posts: 405
15 yr Member
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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
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