Quote:
Originally Posted by LIT LOVE
Unless you went undiagnosed for a long time, then it's urgent that you start an aggressive treatment plan for the best chance at remission.
And for RSD/CRPS your docs must be experienced enough to know what to do during your first appointment. IT SHOULD BE TREATED AS URGENTLY AS IF YOU HAD CANCER, IMO.
I'm sorry, but I've just watched too many people over the years see that first year slip away, and they've subsequently regretted that they'll never know if missing that first year window could have changed their life.
And, if you get relief from the tub and that's you're only access, than make it a part of your routine every day. (But you also might want to check your local YMCA, Easter Seals pool, etc.)
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Hannajane,
Please please
listen to LIT LOVE. They are absolutely 100% correct. When I was newly diagnosed I was in a similar boat as you - I was post-surgical, went through a bunch of tests, couldn't walk, etc.
Everything I read and knew intuitively said to throw the kitchen sink at it,
NOW. But I could not get any traction with the medical community for PT, OT, counseling, or any treatment modality whatsoever beyond nerve blocks and a revolving menu of drugs.
I'm fully recovered from RSD now. I took a big risk and went solo - no more doctors. I felt that was the only choice I had. I'm NOT saying it's the right one for everyone. It would have been much easier to have a doctor to support me but it wasn't in the cards.
Here is a complete list of things I did during my recovery process in the hopes that some of them may help you:
http://neurotalk.psychcentral.com/thread205597.html
This has not been proven, but I believe that the primary cause of spread is excessive free radical damage. Poor bloodflow caused by inflammation results in further damage to the effected area, plus a diminished ability of the cells to remove free radicals generated during their normal metabolic process. The original area of damage then produces an excess of free radicals that are free to travel throughout the body and become trapped in small capillaries (typically in other limbs.)
If I were you, I'd look hard at DMSO and NAC. Both are potent free radical scavengers. The Dutch treatment concept is simple: eliminate free radicals at the source using DMSO. Free radicals that make it out of the injury site are eliminated by NAC.
"DMSO for the site and NAC for the spread."
Here is a link to some supporting Dutch research on DMSO and NAC:
1) 2002 DMSO/NAC study
http://www.rsds.org/pdfsall/treatmen...ee-radical.pdf
Mirror therapy was another key to my recovery in getting range of motion back and retraining the guarding impulse. I did mirror therapy for 10 minutes on the hour at least 5x a day.
2)
http://rheumatology.oxfordjournals.o....full.pdf+html
Obviously take my non-physician's advice with a grain of salt - but I'm only here to help, since I couldn't find anyone who'd actually recovered from this thing when I first got diagnosed.
But again -
LIT LOVE is 100% right - taking action NOW is crucial.