NeuroTalk Support Groups

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NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - RSD in scalp? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/130617-rsd-scalp.html)

keep smilin

08-21-2010 09:38 PM

take me.....

Quote:

Originally Posted by loretta (Post 687464)

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:grouphug::grouphug::grouphug::grouphug::grou phug:

Lisa in Ohio

08-22-2010 08:08 PM

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

loretta

08-23-2010 10:16 PM

Quote:

Originally Posted by Lisa in Ohio (Post 687696)

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

ALASKA MIKE

08-26-2010 10:08 PM

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

RNcrps2

08-27-2010 06:54 PM

Question: Has anyone ever read it spreading to the scalp? Or has your Dr. confirmed that yes it can spread to the scalp? I am due to see my pmDr. again in a couple of weeks but i havent found it written anywhere. But I sure know the burn and sweat. momof4

loretta

08-28-2010 02:09 AM

Quote:

Originally Posted by RNcrps2 (Post 689166)

Yes, my Doc who I have been seeing for 6 years confirmed my lumps and red dots are from RSD in my scalp. He is a neurologist. Take care, loretta

bigsav32

10-15-2010 10:16 AM

Quote:

Originally Posted by RNcrps2 (Post 686489)

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.

bigsav32

10-15-2010 10:24 AM

Quote:

Originally Posted by Lorraine1955 (Post 686638)

Hi my name is Lorraine and I have RSD for 14 years. My doctor is not aggressively treating me and I'm in a lot of pain. Right now he has me 300mg of Avinza and he will not give me breakthrough meds. I was on oxy-ir for breakthrough, but Purdue Pharmaceutical stopped manufacturing it and they haven't replaced it. I was on oxycodene, but it did nothing for me; that's why he upped my Advinza from 270mg to 300mg (big deal)! Please could I have info on Dr. Getson, I live in Brick, (Ocean County), NJ. Thanks!!!!

thanks,LORRAINE,for putting that out there,i'm in monmouth county red bank NJ,had my share of doctors an i to will be giving DR. getson a call.looking for an understanding doctor

RSD2	07-23-2013 01:21 PM

RSD in scalp

Quote:

Originally Posted by Lorraine1955 (Post 686638)

Has anyone been given treatment that works for RSD in the scalp? My hair just coming out by follicles when I touch it with my hand. My scalp is hot and burns really bad. My hair continues to grow back and the small bumps are under the skin. Bad head aches and pain around my eyes. My memory is leaving and sometimes I get very confused.

PuppyPantz

08-26-2021 02:45 AM

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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