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Member
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Join Date: Mar 2009
Location: Belgium, Europe
Posts: 832
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Member
Join Date: Mar 2009
Location: Belgium, Europe
Posts: 832
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I wish you the best.
I am in Belgium.
What is wrong with standard treatment in Portugal, that you aren't "following" that?
I get gabapentin (900mg 3 times a day) for the pain together with buprenorphine pain patches and sublingual tablets.
I have this in my legs, fully, and hands/shoulders/fingers.
In my legs (diagnosed 3 years too late) it is chronic, nothing can be done.
I totally understand not getting out of bed; before I got the pain medication I was in there 24/7. Now I do bedrest until 10-12AM, so half the day. It is still quite unlivable but the pain medication helps a huge deal!
It is atrocious.
My arms aren't yet disabled, as my legs are, and for that I get calcitonin treatment.
I have had bisphosphonates (for recalcitrant RSD/CRPS) as well -> for the legs).
I have had all common EU treatments, even went the Dutch route with Lysomucil 600mg 3 times daily (anti-oxidant treatment). Never touched the DMSO however, too dangerous in my book!
Anyway I wish you the best of luck, because this is a horrible disease and a rare disease to top it off. Not all doctors are even aware this exists. So you have to look for a doctor that understands and has done research on it.
Good luck!
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All the best, Marleen
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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