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

I was recently diagnosed with rsd. one of the most painful areas for me has been my scalp. I try to brush my hair and it feels like I'm brushing over a severe burn. And forget about blow drying my hair. It feels like I'm taking a blow torch to my head. My doctor in Philly wants to do ketamine infusions but the waiting list is appx 1 year. Anyone one know of anywhere else I could check that would be sooner?
dkay

I was afraid someone was going to tell me that. I have heard of some saying they have it in there head but mine is definately scalp- and i havent been able to brush my hair good because it hurts too bad- i look a mess. You know my RSD went from arm/hand/shoulder/feet legs/face/other arm/back and now scalp. I know what it is but i still have to ask-i guess i dont want to believe it.

I heard Dr. Getson in NJ does ketamine and is good.

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!!!!

Dr. Getson is in Marlton, his waiting list is nowhere near as long as Schwartzman's and I think he is wonderful. He actually trained at Drexel with Dr. S and substantially all of his practice is devoted to RSD. I had 22 low dose ketamine infusions with him between mid April and mid July of this year. Last week I switched to a local doctor that has started to offer them in RI. But it's not the same - I loved Getson and will miss his expertise and his facility very much.

He is located at 100 Brick Road, Suite 206, Marlton, NJ. (Right off Rte 73). His phone number is 856-983-7246.

The best of luck to you. Sandy

When my scalp hurts I use Voltarten gel on it. It does help me with the burning. There is also a stronger version of Voltaren called Pennsaid, which is more of a liquid than a gel. That may be easier for you to apply if you have trouble rubbing anything on your skin.

I hope this helps....XOXO Sandy

Oh Wow!! I've been wondering about this. I just thought I was weird because my hair hurt. Went to get it cut and colored the other day and could not wait to get out of the salon. Between the noise and the shampoo I was about ready to just take my head off and leave it there!!. Maybe I should have gone to the saloon instead of the salon. Lisa

Hi Lisa, I'll join you at the saloon-just joking. That is another thing I lost the taste for-any alcohol, coffee, and we are in the coffee business. I'm now a vegetarian too. crazy.
Anyway, I've had rsd 15 years, generalized, full-body and internal. My hair hurts too and have rsd bumps all in my scalp. I'm scared to go back to salon-need to get my hair cut again and weaved. But afraid of the burning and bumps getting worse. Do you also have itching of scalp. I do sometimes and other times, get pain in bumps. Have bad headaches too. Have bumps on my neck and face. I do use Neutragena Acne on the Spot cream and it does dry them up and doesn't get rid of them fast enough.
I'm 62 married-1 married daughter, live in Scottsdale, AZ have a wonderful Dr. that managages my pain. He is a neuro, psychiatrist, and pharmacologist. He has HBOT in his two new clinics here.
Take care, your friend, loretta with soft hugs

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

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