Fibromyalgia and a bed head! - Fibromyalgia Acti...

Fibromyalgia Action UK

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Fibromyalgia and a bed head!

Lizhorse profile image
15 Replies

I know this may seem strange, but I’m getting a lot of pain in my scalp, I have quite long hair and wear it tied up, but recently have been getting so much pain in my scalp. My fibromyalgia is very bad at the moment, I am really struggling to live a normal life, going to work is getting harder and pain is so wide spread, what with my eyes, head pain and everything else, it’s becoming a nightmare.

Does any body else have scalp pain? Or is it just me!

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Lizhorse profile image
Lizhorse
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15 Replies
Mandypandy1969 profile image
Mandypandy1969

I have had really bad soreness on my scalp. I couldn't have my hair coloured because it was painful. another symptom which comes and goes and moves around the body. feels like sunburn. I get it frequently on my back. xx

Lizhorse profile image
Lizhorse in reply to Mandypandy1969

Yes it does feel like sunburn, it’s been so bad, Is this a common thing?

I don’t understand how it can effect your scalp. X

Mandypandy1969 profile image
Mandypandy1969 in reply to Lizhorse

yes it is. you have nerve endings everywhere, even in your brain. It's scary when it's on your scalp.

Lizhorse profile image
Lizhorse in reply to Mandypandy1969

Yes it is, I know it’s silly but I started thinking that I had skin cancer, I asked my partner to look at my scalp to see if there were lumps and sores because that’s what it feels like, and nothing visible. It’s very strange x

Mandypandy1969 profile image
Mandypandy1969 in reply to Lizhorse

I get this feeling a lot on my back aswell. It's the nerve endings. like you Saud, there is nothing there. keep getting my mum to check every time I get it. xx

Twinkle0411 profile image
Twinkle0411

Hi there lizhorse I just thought I would reply. Yes I too do get very sore scalp at times including sore skin it’s hard to explain and sometimes it feels painful or as if someone is sticking sharp needles all over you. I totally agree with mandypandy1969. I used to work full time then cut down to part time and now sadly no longer do. I have m.e and fibromyalgia plus a few more health conditions but I’m sure with the help support and others you can chat to on here you will feel more reassured about this condition. Just remember your not alone. And always message if your truly low. That’s what I’ve started to do or if I’m unsure and I can bet your bottom dollar someone else is feeling or felt the same. Gentle hugs xxx

Springerpup profile image
Springerpup

I used to get a painful scalp too when I had long hair and was always tying it up or back. A year ago I cut my hair short and that helped a lot then I started using shampoo without sulfates and I don't seem to have a problem now. Hope you find some relief.

KateAL profile image
KateAL

Just wondered if you’re putting your hair up too tight, this will cause pain.

Lizhorse profile image
Lizhorse in reply to KateAL

No I can’t tie it too tight, even loose causes so much pain x

Al10 profile image
Al10

Not just you. Can't tie my hair up for fear of hair ache. Did you know that is a thing? 'normal' people get it too!! If you get it after having an updo, the cure is to wash your hair. but with fibro it can forget how to turn off the pain or it keeps triggering with combing or anything touching your head. or you just get it with a loose pony tail or even a few pins. Other things causing it is shampoo conditioner or just lying on your head. Horrid isn't it?

Jenonnet profile image
Jenonnet

I too have the scalp pain problem, it feels as if I've banged my head and have a big bruise there sometimes, but I haven't banned it at all.

I have very short fine hair and I still get the pain. It seems to come on a lot of the time just before a flare up.

The sunburn effect I get on my right shoulder blade, which is quite strange. It's very painful when it starts and even light clothing will make it more uncomfortable.

These pains often seem to be a pre warner of a flare up to come and I've learned to take more notice of them now and take things steadier to try and stave off a full blown flare up. Although they are uncomfortable in themselves, if rather have them than a flare up, so it's nice to have pre warning. 😊

MARION7 profile image
MARION7

Hi Lizhorse, I can't wear my sunglasses for too long either because of pain in both sides of my face/head. Is that the same for you? M

Lizhorse profile image
Lizhorse in reply to MARION7

Yes exactly the same, until you have just said it, I always thought it was just me. It drives me mad xx

Sarahvit profile image
Sarahvit

Oh I get that way when ever I get sick and/or having a bad fibro flare. My hair is short and when the pain is bad my hair follicles hurt. So I just think it is a fibro thing. My daughter who is 25 has long hair down to her waist has never complained of hair follicle pain. When you are experiencing this pain does letting your hair down or laying down getting the pressure off your head from your hair does this relieve the pain? 🤗💕🦋

WorldOHurt profile image
WorldOHurt

I used to get the scalp/hair hurting thing too but it has gone away in the last few years. It seemed to occur just as my fibro was becoming full blown (9 yrs ago) but after a couple of years of my hair hurting it went away. I also got that sunburn feeling on my right back upper quadrant or right chest quadrant also. I thought at the time I was having the silent shingles (without a rash) but now I wonder if it's just a fibro thing.

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