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Member
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Join Date: Feb 2007
Location: Learning to Spread my Brokenwings
Posts: 169
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Member
Join Date: Feb 2007
Location: Learning to Spread my Brokenwings
Posts: 169
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Hi Dreambeliever--the warm baths have been most beneficial for me. I can't stand the water being too hot, either. I do almost ALL my exercises in the tub.
my main problem is SEVERE cold intolerance--and it will trigger a very bad flare-up. My arms/hands turn reddish/purple and ICE COLD. They BURN like when you handle handle snow-balls, your hands turn numb, and then they start to "thaw"..HORRIBLE. I also can't stand to have clothing, etc. on my arms. With the de-senisitization exercises, it has helped, but the baggier and sorfter the sleeves, the better.
I cut all the sleeves off my flannel P.J.s until I found super-soft nighties with NO sleeves. Nite-time can be pretty rough; my legs will be ok, but just my arms/hands will get drenched with sweat and get super-super sensitive.
I have spent a FORTUNE on feather-beds, goose down pillows, goose-down comforter, and very high thread-count sheets (the cheap ones do that balling up thing, and it really bugs my arms...).
My favorite sheets so far are some flannel ones that I got on one of those TV shopping channels, you know, the one that has "Quality"-I found a TERRIFIC "Value" at a "Cost" that i just could NOT touch here in the mountains where I live--and they were delivered to my door! VERY VERY SOFT
Those contrast baths were just AWFUL--my Pain Doc doesn't want me to do them, because it just makes it WORSE, and longer to get everything to calm down. So I have not had them for three years.
I was diagnosed relatively quickly, and started a series of Nerve-blocks within 3 months of the dx--those helped the most, and the Radio-frequency Ablation. WC is "not happy" with the dx--so , they haveve not authorized ANYTHING for the past several years--have basically had to figure everythin out on my own, with the help of my pain doctor. So, while I do have RSD, I feel fortunate that it has not progressed to the level and EXTENT that it has affected others on this Forum.
RSD Kittie--I REALLY understand how awful it is to be all alone with this RSD.
My b-friend of 10 years just "dissappeared" LITERALLY, several months ago after a very serious accident...which is probably for the BEST, as he had become increasingly verbally and emotionally abusive--it might very well have escalated to physical violence. So, I had to make a decision to ALSO have NO CONTACT with HIS "friends or buddies", as they are/were just as bad as he!!! As a result, I am all alone, with my friends/few relatives being out-of-state....this summer, when I am feeling better, i hope to take advantage of the WARM weather, and try to get out a bit, and maybe meet some NICE people.. For now, I am up to my neck in SNOW and no way to shovel it!!!!!
(But, that is ok--I would rather deal with the "white stuff" than the "other stuff", if you know what I mean!)
Some "men" (and "women") are Very threatened by "circumstances" that they "perceive" that they have NO CONTROL over--so THEY control the situation by being nasty to US, reacting in inappropriate ways, or by just BAILING. It has been a true "learning experience", in more ways than one!!!
Just hang in there the very best you can, Kittie--we are a LOT stronger than we think we are--and YOU are one heck of a STRONG, BRAVE lady!!!
If I find any treatments that look like they might be helpful, I will post them. And i am sure that the other posters will too. Finding something that works for you, me or the others, is basically just "trial and error"--keep trying, and I am sure that you will find something that makes the RSD more "tolerable", ok?
Maybe that pump thing that Tayla descibed might help calm things down...couldn't hurt to ask your Doc to give it a TRIAL !!
Brokenwings
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