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A MyFibroTeam Member asked a question 💭
Anaheim, CA

Does anyone get intense scalp pain?? I had to shave my head due to the pain. If my hair gets too long it will break me down to tears

July 6, 2015
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Answer Summary

Members bonded over the often-dismissed yet deeply painful experience of scalp pain in fibromyalgia, with many describing it as feeling like... Read more

Members bonded over the often-dismissed yet deeply painful experience of scalp pain in fibromyalgia, with many describing it as feeling like their hair has been in a too-tight ponytail for too long, causing burning sensations, hypersensitivity to touch, and pain so severe it leads to tears, vomiting, or the decision to cut or shave their hair. Several members shared that the pain appears in different patterns, from generalized tenderness to localized spots, sometimes accompanied by muscle tension in the neck, twitching, or swelling, with a few finding temporary relief through craniosacral therapy, ice packs, or neck adjustments. A recurring theme was the fear of not being taken seriously by others or even by doctors who dismiss it as unrelated to fibromyalgia, yet members found comfort in validating each other's experiences and reassuring one another that they are not alone in this struggle.

A MyFibroTeam Member

I have scalp pain periodically. Luckily, it's not on a daily basis.

July 7, 2015
A MyFibroTeam Member

yes! SO MUCH YES! It feels like my hair has been in a ponytail too long and your head is sore

July 7, 2015
A MyFibroTeam Member

I have reoccurring ear infections and sinus infections. Outside my skull under my skin I feel swollen all around the back of my head to my temples. The muscles in my neck are involved as well. The pain is so intense I will vomit from it. Especially at night when I’m trying to rest. It encompasses the whole back of my head. It does reoccur periodically. Sometimes I think it’s from my ears. Other times I think it’s from my sinuses. At times I think it’s muscles and fibromyalgia. I find my eyebrows twitching. I will have spasms in my scalp with twitching often and think it very strange. However when this happens I can’t do anything except try to ice it down with ice packs and lay. There is no relief. It is all encompassing pain. Still looking for answers.

September 17, 2018
A MyFibroTeam Member

For me I both have pain like it has been tied too tight/too long and a prickling pain/itch sensation. Or maybe they are the same pain just different severities since it is not at the same time.

My doctor insists that it couldn't be the Fibromyalgia since that is muscular and she's supposed to be a Fibromyalgia specialist.

But sometimes the pain does go down when my neck pops.

I just wish there was a way to make all the pain go away. Feeling pretty miserable awake for the last hour at 2:40am. I already took something for it. Waiting for it to go down enough to go back to sleep.

January 4, 2018
A MyFibroTeam Member

I have just started having this pain. It is exactly as someone stated earlier, like my hair has been in a ponytail too long! The pain is on the top left side of my head. I was really worried about it and then I realized that this could be a new “Fibro” thing. Currently having a major flare, quite possibly the worst one ever. Does anyone else experience the scalp pain in just one spot or is it a more generalized pain/tenderness?

October 11, 2017

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