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 09-15-2008, 04:37 PM #6
Coffeebean Coffeebean is offline
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Join Date: Dec 2007
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15 yr Member
Coffeebean Coffeebean is offline
Junior Member
 
Join Date: Dec 2007
Posts: 75
15 yr Member
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Hi Tina. Sorry to hear you are having so much trouble with the doctors. I live in Indiana and I have been to at least 12 in the last 18 months and most of them do not know about RSD so I feel your pain (sorry for the pun). Anyway, I got so frustrated I made the six hour trip to see a specialist at the Cleveland Clinic. It was an excellent move on my part because I finally got to see a doctor who has been treating RSD for years. It made a big difference just to walk in and not have to explain to yet another doctor what it is I am dealing with. However, the distance makes it hard to have continuous medical care so it is a trade-off.

I too developed RSD from the the transposition of my ulnar nerve, but only in my left arm. It started up right after the first surgery and (stupid me) I had a second surgery in that same arm in the hopes of easing the terrible pain. I did not know at the time of the second surgery that I had RSD. That became much more apparent two weeks after the second surgery.

I struggle with meds and what works and what doesn't. I swear it depends on the day - sometimes my meds help, sometimes PT, sometimes heat and sometimes none of the above. I do know that for me when I am miserable I take my $3.00 scrub brush and scrub a glass cutting board on the kitchen counter. I swear, something about the compression and the routine of going back and forth (just like you were bent over scubbing the floor) helps to reset my sympathetic system just enough that I can get some relief. I tend to do this for about two minutes, and depending on the day, sometimes 4-5 times. You might be able to take a little scrub brush with you to work and scrub on the counter, curb or anywhere you can. I learned this from a hand surgeon. It is particularly helpful for those with ulnar nerve involvement.

As for the blocks, I chickened out and did not do them. From what I have read, it seems three blocks is the magic number - it will either help or not, without doing harm. I think if it doesn't help, then the pain is not SMP (sympathetically maintained pain) but is considered SIP (sympathetically independent pain). This is what I have been told from several doctors. So even if you don't feel you have benefitted from the blocks, it does give you and your doctor some valuable information.

Good luck and I am hoping you have better days.
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