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Old 11-25-2014, 02:17 PM
LISAR624 LISAR624 is offline
Junior Member
 
Join Date: Aug 2014
Posts: 56
8 yr Member
LISAR624 LISAR624 is offline
Junior Member
 
Join Date: Aug 2014
Posts: 56
8 yr Member
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Quote:
Originally Posted by WolfLarsen View Post
I was diagnosed with RSD by a foot & ankle specialist. He first tried some simple physical therapy treatments but it hasn't worked yet so I'm wondering what course I should persue next.

It sounded like I should go to a neurologist, who then might refer me to a pain clinic, with anesthesiologists specialising in pain management. I'm curious to hear what advice others might have on this- on who to see and what treatments are worth considering, etc.

I want to keep costs down- I don't have insurance or a job right now- but I also want to get this cured.

Also, whats the best way to find specialists who are sufficiently knowledgeable about this? It seems to be pretty critical with RSD. This went undiagnosed for months until I finally found someone who figured out what it was- my primary care guy ranted about how I was a hypochondriac and wasting his time.

Right now I live 50 miles from Sioux Falls, SD, but staying with relatives is an option- I have some that live about 90 miles from the Mayo Clinic.

Anyway, any advice anyone has is surely appreciated!

If anyone's curious this is kind of where my RSD is at right now:
My RSD by the sound of it seems less severe than may cases. Its mainly very weird about temperature. If it gets below the low-mid 80s I have to bundle my foot heavily to keep it warm, and it tends to become very stiff and immobile. But if it gets too warm, which is pretty frequent, it gets red and inflamed and very uncomfortably hot. I wouldn't say it hurts much except if its really too hot (burning) or too cold (aching), although its extremely touchy and easy to injure by overexertion or walking on it when stiff, etc.

I had been able to walk on it pretty well until recently a physical therapist did some ill-advised stuff to it and messed it up so bad I was crutches only for a week, which was apparently enough for the RSD to worsen dramatically just from inactivity and I now find my foot so stiffened and touchy that more than a few steps walking on it seems risky. It also abruptly spread to my other foot, which I had slightly injured, and for awhile I was getting an exaggerated pain sensation in addition to hot and cold, although its tapering off a bit now.
The sad thing is there is no cure. It can go into remission but throughout your lifetime it could spread so be alert! The best thing is to get it diagnosed early. Which it sound like you have done. I have had nerve blocks, epidurals. therapy & meds. I know meds. have gotten a bad rap but I feel if you can get on the right ones and stay on them and let your Dr. know how they are working! Get a great neurologist and pain mgment DR. Stay on this support group because it really helps to talk with others dealing with the same pain. DO NOT GIVE UP! I have been living with this for 18yrs so I understand!!!!LISAR624
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