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 03-04-2010, 07:50 PM #1
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Debby Debby is offline
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Join Date: Aug 2006
Location: N CA
Posts: 365
15 yr Member
Debby Debby is offline
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Debby's Avatar
 
Join Date: Aug 2006
Location: N CA
Posts: 365
15 yr Member
Confused New Symptom for me anyway

Hi all!
Lots & lots of new handles & some older ones too. Not sure if many of you remember me as I haven't been here in a very very long time..........I have had to face some of life's hardest ever slaps..........but I am still hanging in there.

But since last October I have been dealing with what is for me a new symptom. I will be doing nothing in particular at all & all of a sudden the top/back of my head, including my ears even, will start burning. The burning of RSD that we all have with this dastardly syndrome. The burn that feels like molten rock, red hot coals &/or how crushed glass would feel to walk on. Only like I said it is the surface areas. If I do nothing to contain the pain, eventually that burning sensation will cover the whole of my body. I also turn a bright red everywhere & am red hot to touch. My 4 yr old grandson was here when it happened one time & he says "Grammy you are ssssoooooooooooo HOT!! (when he touched my ears) and sssooooooooooooo red too." Man I was in PAIN! It was the same burn as when this started in Nov 03 in my feet. I took an extra 1200 mg of gabapentin & I also took my BTP meds. I have found the quicker I take this stuff when the burning starts the quicker the intense pain resides. It use to happen approximately 3 times during a 2 month stint, then maybe 4 to 6 times in a 2 month time frame. In February it happened 4 times & 3 of them were within a 5 day time frame.

HELP!?!?!? I had told my PM doctor about it last Dec. I only see him every 2 months. He told me to keep track to see if stress set it off at all. On a few occasions perhaps but NOT most of the time. I suggested maybe Upper Stellate Ganglion nerve blocks so as of next Mon 3/8, I will have a series of 3 on the left side. Does anyone have any other suggestions I could try to put a halt on this/these new symptoms. This is scary to me. I would hate to have this horrible burn take over my whole body permanently. I don't even know what type of doctor to go to besides the one I am seeing now. Unless perhaps a neurologist??

I live in north central California, close enough to Sacramento, if anyone knows of a good neurologist who treats RSD patients a suggestion would be helpful.

Thanks alot & hoping this finds ya'll as well as possible & as pain free as possible.

Debby
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