Intermittently, I am noticing pain in my scalp. I cant really explain the pain. It seems superficial to the skin and oh god it hurts to even touch my scalp, let alone run a comb. I talked to my rheumy about this but he just dismissed it and said it doesn't look like a lupus symptom. I noticed that I can feel the pain if I wear an elastic or put my hair up in a ponytail or a bun. I always let my hair down these days, but, I can still feel the pain some days.
Has anyone experienced something like this? All your inputs are highly appreciated.
I also have pain in my scalp,I stop with the ponytails as well ,it’s feels also like your scalp and your hair " hurts…
When I have that I usualy wash my hair and just letting it “free”…I don’t have other solution…
Oh yes indeed it is part of my Lupus. I’ve been treated for Lupus since age 25 but traced back to age 7 and I’m 51 now. I have head/scalp pain the entire time although some days it’s horrendous. Mine now has actual Lupus sores on my scalp. Little nodules, some are flat some not and they hurt to the touch also. Lupus can attack any organ it wants. Our skin, and therefore scalp, is considered an organ also. So tell your doc this is a symptom of Lupus. I hope it gives you some days of relief soon!
Feel better!
Sheri
Thank you for posting this! I always have scalp pain. It feels like my skin is sore and sensitive and I could never explain why. I’ve never told anyone because I thought they’d think I was exaggerating.
I have this scalp pain too! The way it works for me is that if I wash my hair and put it up while still wet, no scalp issues. However, if I let my wet hair air dry and then put it up in the ponytail, that’s when the pain gets nasty. I never attributed this as a lupus issue, but maybe it is? Either way, that’s my solution and it works for me. If I blow dry my hair and then our up, it also hurts (but I hardly ever style my hair anymore; sigh). But I hope this helps.
Lupus patients experience all kinds of pain, and the disease can manifest itself wherever it wants… Drs are taught we have a particular set of symptoms, and they use those guidelines for diagnosis. No one, except another Lupus patient, knows what we endure.
I also have had Lupus for many years and experience scalp pain. I can not wear barrettes, clips or pony tail holders. Sometimes even when my hair is down, my scalp and hair hurt. At times, the orbits of my eyes will also be very tender to touch also. I agree with Mountain Mama, No one, except another Lupus patient, knows what we endure! That's what makes this forum so comforting. We're not crazy , we have LUPUS!
I’ve not experienced pain such as you describe here but I experience a “crawling” sensation periodically throughout my hair and scalp. It doesn’t “hurt” so to speak but its very uncomfortable and is slightly painful when scratched. This is something new for me since a) my diagnosis last summer and b) taking the med Methotrexate. Not much help I know. Keep us posted.
I have had this on and off for 20 years. I've had lupus longer than that. I don't know what it is. Since lupus is called a connective tissue disease, maybe it's the connective tissue under our skin on our scalp. A long time ago, someone else posted about this, and I was quite amazed at how many of us have it.
Mountain Mamma you’re so right!! I’m utterly stunned how my rhuemy refuses to tread beyond the “list of symptoms” on her computer screen. And yes, this forum has been a tremendous resource and comfort for me.
Mountain Mama said:
Lupus patients experience all kinds of pain, and the disease can manifest itself wherever it wants… Drs are taught we have a particular set of symptoms, and they use those guidelines for diagnosis. No one, except another Lupus patient, knows what we endure.
A huge thanks to everyone for sharing your experiences and your suggestions.
I was on the verge of freaking out because my rheumy said I should see a neurologist and get some scans done if the pain continues. I am relieved to hear that this is one among the myriads of lupus symptoms. This is yet another adjustment that I have to make in my life.
I have Discoid Lupus, the skin kind (among other kinds). Diagnosed by a biopsy of a lesion on my forehead. This form of Lupus causes a rash wherever UVA or UVB or flourescent light has hit the skin for a prolonged period of time. I now have to wear special SPF50+ clothing when I am out in the sun. I also discovered when in a skilled nursing facility, that when I am in flourescent lighting I get a rash all over my body. As far as the scalp problem, it happens with Discoid Lupus so I wear SPF 50 hats when out in the sun. The best place to get these is Coolibar.com. They have all sorts of SPF clothing and hats and accessories for sun sensiitive folks. ... I don't know what could cause scalp pain except Discoid Lupus, but there might be a general cause. I don't know.... Good luck! And Happy Holidays!
marybeth
Lakshmi Priyadharshini said:
A huge thanks to everyone for sharing your experiences and your suggestions.
I was on the verge of freaking out because my rheumy said I should see a neurologist and get some scans done if the pain continues. I am relieved to hear that this is one among the myriads of lupus symptoms. This is yet another adjustment that I have to make in my life.
Yes. I have the same thing and know exactly what you’re talking about. Feels like I’ve had my hair in a pony tail even when I haven’t. Sensitive to touch and sometimes I kind of massage my head. It is basically a sign of inflammation. I sometimes get tiny shooting pains that run from front of scalp to mid scalp as well but totally different feeling. You are not alone though.
Yes! I thought I was crazy too! I think it's actually a fibromyalgia thing instead of lupus related. I tried wearing my hair down, didn't help. I even got my hair cut from waist length to above my shoulders...still no difference. It is always somewhat painful, but there are days when it hurts to brush my hair or wash it! It seems to flare along with my other fibromyalgia pain, so that's why I think they are related. And if I remember correctly, some huge percentage (80% maybe??) of Lupus patients also suffer from fibromyalgia. It's nice to know I'm not alone, but I am sorry for your pain!
I have this scalp pain also. Maybe not so severe, but a constant relatively painful itching. It feels very good to be under a hot shower and just rub my scalp, or almost pull on my hair. I noticed this about the same time I started Plaquenil, about 6 or 7 months ago. When I schedule a haircut I be sure to take some ibuprofin before I go, or else it is just about unbearable when he combs my hair. Most of the time it hurts when I brush my hair in the morning after a shower. I asked my dermatologist about it since it seemed to start about the same time my night sweats ended, and I inquired whether it was a side effect of the Plaquenil. He said it was most likely Lupus related rather than a drug side effect because the Lupus involvement with my skin, maybe its a subdermal issue? As of now I only have skin involvement and no organ involvement. I hope it stays that way. I've read on here that some people use a good conditioner that seems to help. I recently started using "Mane and Tail" shampoo and conditioner also, I found it at Rite-Aid and is supposed to be good stuff. I'll see if it helps with the itchy painful scalp and let you know.
Absolutely! Very scalp sensitive,especially when I wear a ponytail or elastic in hair! Feels like I e been hit with a hammer" it swells up and hurts oh so bad, n just excused as,idk!!!.. But got a wonderful dermatologist,who biopsy and got a Lupus diagnosis! Lupus has attacked everything in my body to now vital organs! I’ve found being spiritual grounded,not isolating,sharing with people I can trust,and a painful as it can be, trying to keep physical by little walks is helpful but still have to take it,"one second at a time "! I’ll kee you in my prayers !
I'm late to this thread but wanted to add my two cents on the subject. This is a problem for people with fibro as well. Is it possible that some of you also have fibro? If you search their past threads, you'll see this problem covered there.