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Old 11-10-2006, 07:38 PM
beth beth is offline
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Join Date: Sep 2006
Location: Central Illinois
Posts: 287
15 yr Member
beth beth is offline
Member
 
Join Date: Sep 2006
Location: Central Illinois
Posts: 287
15 yr Member
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Vic,

I really am so sorry, I hate to hear anyone get this diagnosis. But I would suggest having another discussion with the Dr to clarify if he is definitely saying you have RSD, which is the older and more commonly used term for CRPS - Complex Regional Pain Syndrome.

If that IS the case, the first thing that should be done is stellate ganglion blocks - these are done both for diagnostic reasons and also because, if done early enough , a series of these blocks can sometimes put RSD into remission. It's standard treatment for RSD, and if he isn't knowledgeable about treating RSD patients, you need to be referred to a Dr who is. It's REALLY important! Teaching and university hospitals are most likely to have Drs experienced with conditions like this, while other Drs rarely see them in their entire years of practice.

The best Drs will offer lots of options, continue to try things, keep current on research, while others will shortly throw up their hands, say they've done all they can and just maintain you on pain meds. The former are the type you want to find, I've been with both and am glad to say I am finally with a REAL PM Dr.

Please talk to your Dr, ask if by CPRS he means RSD, and if so, will you be getting the Stellate Ganglion Blocks soon, ok?

I don't have the web address but RSDHope is a great site, tons of resources. The RSD forum here is also very active and helpful. And quite a few of us here also have RSD, unfortunately, you're NOT alone in this - please reach out, ask questions, vent. You know there's always someone here ready with a listening ear or a shoulder to (virtually) lean on.

Keep hanging on - stress does make it a lot worse, staying calm can keep it less active. For me, staying warm is also key, since my "thermostat" is broken. The SCS seems to be doing an amazing job of relieving the worst of the RSD pain, which has always been in my right hand and forearm. Both arms, fingertip-to-shoulder feel pretty good, as a matter of fact! Only 5 more weeks of not bending, twisting, reaching or lifting and I'm good-to-go! And for a special treat, I'm allowed my first shower today, a week after surgery- whoo boy, am I ready for it

((((e-hugs)))), beth
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