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 08-21-2010, 01:47 AM #1
loretta loretta is offline
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Originally Posted by RNcrps2 View Post
Hi everyone. Have generalized CRPS. I have had burning in my face before and it has eased off in that area but recently my scalp(about 6inches) felt like i had bad sunburn(not in sun without a hat and it isnt my part-line). To move my hair causes such pain. I also have headaches on and off now. Does anyone else have this on their scalp?? momof4
Hi RN, Yes, I have generalized RSD 15 years now. I have skin bumps, lesions all over my scalp. They hurt, my hair hurts, itches sometimes, other times just hurts to touch, burns. I also get them on face. I do use a Neutragena product called Acne On The Spot. It's a cream and seems to dry them up, but doesn't get rid of them, they just pop up other places. But i do like the product for calming them down.
I'm getting my hair cut shorter. I changed shampoo to Dove as I feel it is more natural with less perfumes etc in it.
Take care, your friend, loretta with big hugs
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RNcrps2 (08-23-2010)
Old 08-21-2010, 07:51 PM #2
loretta loretta is offline
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Originally Posted by RNcrps2 View Post
Hi everyone. Have generalized CRPS. I have had burning in my face before and it has eased off in that area but recently my scalp(about 6inches) felt like i had bad sunburn(not in sun without a hat and it isnt my part-line). To move my hair causes such pain. I also have headaches on and off now. Does anyone else have this on their scalp?? momof4
Hi Mom of 4, I also have generalized RSD. I can count 50-75 lumps on my scalp. They HURT!. Some are like red dots and others are like lumps that hurt real bad touching them. I'm going to talk to my Dr. about a cream med for them. I have switched to a mild Dove Soap. Any products does anyone feel is better than another.
What ages are your children? Hang in there. Our only child is 30 and a wonderful help as well as our son in law. They helped us in our recent move. We only moved 5 miles, new house is 1/2 the size-Didn't need 4 bathrooms to clean that's for sure.
I'll share if I get any new info or meds for scalp issue. Thinking of you all and hope for endurance for us all. your friend, loretta
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RNcrps2 (08-23-2010)
Old 08-21-2010, 09:38 PM #3
keep smilin keep smilin is offline
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Quote:
Originally Posted by loretta View Post
Hi Mom of 4, I also have generalized RSD. I can count 50-75 lumps on my scalp. They HURT!. Some are like red dots and others are like lumps that hurt real bad touching them. I'm going to talk to my Dr. about a cream med for them. I have switched to a mild Dove Soap. Any products does anyone feel is better than another.
What ages are your children? Hang in there. Our only child is 30 and a wonderful help as well as our son in law. They helped us in our recent move. We only moved 5 miles, new house is 1/2 the size-Didn't need 4 bathrooms to clean that's for sure.
I'll share if I get any new info or meds for scalp issue. Thinking of you all and hope for endurance for us all. your friend, loretta

to the saloon.. I wanna to go!!!!

Love... Kathy:grou phug:
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loretta (08-24-2010)
Old 08-22-2010, 08:08 PM #4
Lisa in Ohio Lisa in Ohio is offline
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We will have to set up a date!! Oh Wait ! I don't date, gave it up for Lent five years ago and discovered life is better without taking care of a man again. Plus I really like all the extra closet space. Anyhow, hopefully sometime in the near future maybe we can all go to the saloon and the salon when they find a cure for this crazy a-- disease. Cheers, Lisa
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loretta (08-23-2010)
Old 08-23-2010, 10:16 PM #5
loretta loretta is offline
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We will have to set up a date!! Oh Wait ! I don't date, gave it up for Lent five years ago and discovered life is better without taking care of a man again. Plus I really like all the extra closet space. Anyhow, hopefully sometime in the near future maybe we can all go to the saloon and the salon when they find a cure for this crazy a-- disease. Cheers, Lisa
Lisa, count me in! A cure has to be first as RSD destroyed my taste for anything good at the saloon, including coffee, and we own a coffee business-used to love coffee in the am.
You are so funny, I enjoy your posts, your friend, loretta
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Old 08-26-2010, 10:08 PM #6
ALASKA MIKE ALASKA MIKE is offline
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i have it in my scalp too.

what is weird lately is i had a pump put in and as the doc turns up the pump my scalp goes numb (the same feeling that your cheek feels like when you leave the dentist after a fiiling was put in).

i also get the lumps and red bumps along with the extra sweatting. i have to carry a hand held fan to all my appts.

mike
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ALASKA MIKE
ARACHNOIDITIS,CRPStype2/CAUSALGIA since 2004
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loretta (08-28-2010)
Old 08-26-2021, 02:45 AM #7
PuppyPantz PuppyPantz is offline
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Hi,
I've had RSD for 15 years also, spread throughout my body. I'm having the same issues with my scalp .. Pain when I moved my fingers through my hair, burning scalp, itching.. and I was diagnosed with lichen planopilaris.

Amazing.. I don't feel so alone after reading all of this. I'm sorry for what your going through. RSD is truly awful. Especially when it gets to your head.. Literally..
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Old 10-15-2010, 10:16 AM #8
bigsav32 bigsav32 is offline
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Quote:
Originally Posted by RNcrps2 View Post
Hi everyone. Have generalized CRPS. I have had burning in my face before and it has eased off in that area but recently my scalp(about 6inches) felt like i had bad sunburn(not in sun without a hat and it isnt my part-line). To move my hair causes such pain. I also have headaches on and off now. Does anyone else have this on their scalp?? momof4
man, i cannot believe it,i too am experiencing the sane thing.have headaches all the time an have to have some kind of hair grease in my head otherwise my scalp burns like crazy,with the meds,if i go over the extended period my headaches increase big time where as i'm always looking to go to the er.i now have a container on my key chain to carry my meds where ever i go.
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