Painful scalp!

Hi All! I hope everyone is well and had a lovely holiday season.

I’ve been diagnosed with lupus for two years now and thought I had experienced every kind of discomfort, ache and pain it had to throw at me. But, for the last month or so I have had the worst pain on my scalp. It started right at the crown and only when I brushed my hair.But now it covers pretty much the whole top of my head. It also is not confined to when I am brushing it. All I have to do is touch my head like during a headache and it feels like every nerve is raw. My husband has looked and has seen nothing unusual.

I do not wear my hair up or back in a ponytail. I probably only use a dryer on my hair about twice a month. The pain I feel is the same as if I had it in a VERY tight bun for about three days!

Does anybody else experience this? Thanks for reading this.

take care,
wendy xxx

Same thing happens to me. It feels like i've had my head tied up too tight and the feeling usually progresses to a headache for me. I've currently started a keratin treatment for my hair, i'm hoping maybe that will help.
I'd love to know if anyone else has experienced this too and what they did about it. xx

i have.its so weird but man it really hurts sometimes.I feel bad i have 3 little girls who want to play with my hair, and im either afraid its going to fall out(i have lost alot) or it just hurts to much.

Yes I have experienced the same feelings.I have had lupus the past 10 yrs but it only started about4 years ago after me being diagnosed with bells palsy…My scalp is so tender to touch it feels like a baby’s bottom.It’s really hard for me to shampoo,comb or do anything.I have been to see a neurologists due to constant migraines.And was told I had an damaged nerve in my head…As if today I have not found a solution to the pain scalp…I try to avoid any sudden touches to the head,it makes me really nervous even when someone gets close to me.A massage to the neck sometimes soothes the pain but not for long.So no U guys are not alone:)

I currently have a sore scalp due to over exposure to the sun. I was diagnoised about 1yr ago with Lupus and this is my 2nd flare up with it. The first time only affected my face, neck with a rash this time I got sore spots on different areas on my scalp. My Rhuematologist Dr said that my Plaquenil should take care of it but so far it has been 3 months and my scalp is still sore with raised bumps and peeling skin. My Dermatologist prescribe a medical shampoo for me it is called Ketoconazole 2% I have been using it for 3 wks and so far the itching has stopped and the peeling also but the bumps are still there but are starting to go away.

My scalp has hurt me about 2 years after I was dx'ed in 1972, it all started with over exposure to the sun, and I got rashes that even when they are gone I have bald spots and they hurt all the time...and bleed too....I almost forget about it because I have Lupus for so many years. I also found that over exposure from florencent light does not help me. I do put a lotion on called diprolene from my doctor and this really helps. I do have bald spots and gray hair and would love to color it but no one recommends this for me because it would probably hurt me......I thought I was the only one that had a problem with my scalp....good luck Zuppie

I have had this problem for years.....I never heard of anyone with this problem other than me. Just another crazy painful gift of lupus. I'm sorry you have to deal with this. Mine comes and goes if that's any help.

Take care,

Mary Alice

I have experienced the exact same thing and although I do not wish any discomfort on any one it is kinda nice to know I am not alone. It is really bizarre and hard to explain to people. I grew my hair out thinking it would be helpful if I could just throw it up in a clip…little did I know that doing so would cause such pain. A lot of times it eventually radiates throughout my whole head and down into my neck!!! Don’t know what it is but it sucks!!! See we can’t all be “crazy” :wink:

Yes Wendy...I do...however I also get open sores on my scalp...and have to use baby shampoo when they are present and painful as regular shampoos burn like crazy! I used to just get the feeling you describe...but it grew into the present situation. the sores are not always present...but when they are...eeyouch! Hope you just get the sore scalp...and not the sores scalp! Good luck...and check with your rheumatologist if it continues. Blessings...LaLupe

Oh yes, it’s a weird sensation. Sometimes u put a few drops of tea tree oil in my shampoo, it helps somewhat. If u find any answers, please share! Best wishes


Hi everyone! Thanks for your input, suggestions and support. It means a lot to me.

I will definitely be trying your suggestions and addressing it with my stylist and rheumatologist. It is wonderful to know that no matter how weird the symptom I am not alone in this horrid disease. My husband and daughter are super supportive and they are sympathetic but can never truly empathize with me. Having you guys out there helps keep me sane...or as sane as I could ever be. LOL. I know I am new to the board but I am hoping to be a source of support for you all too.

Again thanks for everything.

take care,

wendy xx

Hi there !!! I've had this from time to time .The doctor says there's really nothing (meds.) for it . So to complain to the doctor is useless. When this comes over me -i just relaxe totally and try not to touch my head (which is hard if it itch) ...LOL We have so much to deal with this LUPUS stuff, til i have just stop saying what's next and take it as it comes ... Bevely L.

mine just started along the hair line. It's scaring me that I'm going to lose my hair. I do wear my hair back bit my head has never hurt. I'm newly diagnosed so still learning.