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Ccjanus

New member
Joined
Feb 3, 2016
Messages
4
Reason
DX FIBRO
Diagnosis
10/2015
Country
CA
State
ON
I wanted to add this comment Oman older thread about hair loss and it was closed..
I was diagnosed with cicatricial alopecia ( aka scarring alopecia) 3 years ago no was diagnosed with fibro a few months ago. Since then I became involved in CARF , an organization that helps fund research and holds a bi annual patient Doctor conference. If your scalp hurts,and you have hair loss you should see a dermatologist for a diagnosis. Or if you've lost your eyebrow hair and your hairline and sideburns hair are receding,that is another form of scarring alopecia. There are medications ( I know, more pills .:-() to stop the loss. With this category of alopecia, once the hair is gone, it is gone for good, so getting treatment quickly makes a difference. In Toronto Canada there is a support group called CASA. In the us, there are several cities with support groups run by doctors..if you have these symptoms, check out CARF or message me.
If the hair loss is in patches , or you've lost all you hair, then it's alopecia Areta or another type of alopecia.In the us there is an organization called NAAF that has info and support. In Canada it's CANAAF. again get a referral to a dermatologist with an interest in hair to get. Correct diagnosis and treatment.
If anyone has info/ research connecting fibro to alopecia, I'd love to see it, so that maybe we can solve the fibro thing through hair loss research...???
 
Re: Hair loss

Thank you CC, I have hair loss but I did think it was related to the fibro. I will check on this
 
Thanks for sharing. I suffered from hair loss back in 2011, mine is not the scaring type, but I suspect a lot members of this forum might suffer from this. I've been a member of this forum for a while, and I've read so many posts of people who claim they have a burning sensation on their scalps. It's odd, but it seems there might be some sort of link between fibro and this kind of alopecia, you never know. I've also noticed many people here had stomach issues as well, just like I do... Maybe it's all linked? After all fibro is still not a very well known disease.
 
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