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Real members of MyFibroTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyFibroTeam Member asked a question 💭
Smithfield, VA

I usually keep my hair up in a bun cause I hate it down, but I'm having such a bad flare today that my scalp can't handle it. It feels like its on fire. Do you guys know a gentler way to keep my hair up?

March 5, 2019
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Answer Summary

Members connected over the shared challenge of managing hair when scalp pain makes even a simple bun unbearable, with many describing how... Read more

Members connected over the shared challenge of managing hair when scalp pain makes even a simple bun unbearable, with many describing how their scalp feels on fire or how even the weight of their hair can hurt during a flare. Several members offered practical solutions, including lightweight hair clips instead of painful ponytails, loose braids (with caution about headbands triggering headaches), and considering a shorter haircut to reduce both weight and daily strain. A recurring theme was the difficult balance between wanting relief and the financial or emotional barriers to getting a haircut, met with humor, empathy, and gentle encouragement to prioritize comfort even when it means letting go of longer hair.

A MyFibroTeam Member

Sorry, I haven’t had any hair in a couple decades, but I know sometimes the tiniest thing can hurt like hell. But you may want to consider chopping off what hurts.

March 5, 2019
A MyFibroTeam Member

Remember, “it’s just a flesh wound”!
Ha Monty python may be a good distraction from pain.

March 8, 2019
A MyFibroTeam Member

Maybe a loose braid? Or a headband, but be careful because that can make your head ache.

March 6, 2019
A MyFibroTeam Member

I used to use Lilla Rose clips when pony tails hurt too much. But i am recently diagnosed and havent tried them lately now that my hair is longer again. Some days even the weight of my hair feels like it's pulling my scalp and hurts like hell. I am thinking of chopping it off but worried I'll regret it if it doesnt help.

March 7, 2019
A MyFibroTeam Member

@A MyFibroTeam Member lol no harm done, it just SOUNDED brutal but I personally did not think for a second that you meant to minimize the posters's pain. It was nice of you to post a clarification just in case 🤗

The visualization of your words "struck" me... @ chopping off what hurts - philosophically I suppose that's what cognitive therapy is all about.

On a more comedic note, If I literally chopped off that that hurt me I'd be chopping off my limbs right and left and end up looking like the knight in a Monte Python movie🤣

March 6, 2019

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