Classic Blog: March 11, 2009
Before I was diagnosed with fibromyalgia, I was sure I had lupus. The symptoms are extremely similar, and one of them that really had me convinced was hair loss. Every time I washed my hair, the tub was covered in it. Still, when I have flares, I leave more hair behind than my husband, who's thinning a bit. (Good thing he's a saint so he won't mind that I mentioned it!)
Eventually, I found out that hair loss actually is a fibromyalgia symptom - it's just not one that typically makes the brief symptom lists you come across when you're frantically scouring the Internet to figure out what's wrong. (Those little lists make me crazy, which is why I put together the Monster List of Fibromyalgia Symptoms.)
As usual, no one knows exactly why we tend to lose our hair. Since stress can cause hair loss as well, I have to wonder if it's connected to the disruptions in our stress-response system. Whatever the cause, the good news is that it's temporary hair loss - the follicles don't stop producing hair as in male pattern baldness or the autoimmune disease alopecia. The hair falls out, then a new one grows in.
I've lost enough hair in a short enough period before that my hair got noticeably thinner. Then, as lots of new hair grew in, all the short ones made it look like my hair was all damaged and broken off, which it wasn't. Now I'm keeping my hair shorter so the grow-out isn't as obvious (I need to update my photo - it's much shorter now.)
If you've wondered about hard little bumps on your scalp that come off when scratched, I read an explanation of that somewhere. I don't know how accurate it is, but the claim was that natural oils collect in empty follicles after the hair falls out, and new growth pushes them out. The site suggested adding jojoba to shampoo to get rid of them, but I haven't tried it. I'd love to hear from someone who has!
Have you had hair loss with your fibromyalgia? Does it really bother you? Has it gotten bad? Have you found ways to stop or lessen it? Share your experiences by leaving a comment below!
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My goodness, it seems every article you write gives me an “A-ha!” moment. My mother, who is a hair dresser, constantly scolded me for “digging at my scalp”. I didn’t know why I did it, just had to get those little bumps out. Now I feel SOOO much better- it’s a physical condition, beyond my control! LOL! I noticed a lot of hair falling out last fall and because it was on your Monster List, I didn’t get frightened. Thank you for your fabulous work!
interesting info, thank you for sharing that. Yes, I’ve noticed my hair falling out a lot lately. Sometime in small clumps. I have long hair so what comes out is from tip to tip. Nice to knw it does grow back.
Your blog is always filled with wonderful info, and as a fibro person I truly appreciate it. I have also experienced the “hair loss”. I also have hypothyroidism (low thyroid), and hair loss is a symptom of that, too.
May I suggest? Biotin and Evening Primrose Oil have helped my condition immensely! I read about it in connection with the low thyroid condition (thanks to Mary Shoman and “Sticking Our Necks Out”), but I had a cellular-level blood analysis with my doctor at the same time I was diagnosed with fibro, and the test showed big deficiencies in various, but two that really threw the light switch to “ON” proved I needed both Biotin and EPO to correct the problem. Coincidentally, hair loss is associated with these deficiencies?
Could there be a correlation to deficiencies that need these supplements to correct a problem associated with fibro??? Maybe……
I’ve been using the Biotin and EPO for almost 2 years now, and my hair is healthy, strong…my stylist tells me that he has never seen my hair so healthy. It still “sheds” more often than I would like to see, but it is less than in years past and what I have looks so good that I’ve been growing out for the past 2 years.
I’m not a doctor, but it may be a good idea to consult yours before adding these supplements to your daily vitamins and meds.
Thank you for your article. I had such bad hair loss last year my husband started washing his clothes separate from mine so they wouldn’t be covered with hair. He also pointed out this year how fizzy my hair was.(All the hair growing back).
He usually is very supportive but I was about to commit some sort of revenge if he didn’t shut up. My hair loss was not a laughing matter to me. My doctor and hair dresser both said there was nothing to do and it looked like it was growing back. I was thinking of buying a wig it got so thin.
Anyhow thank you for the answer to why, shoulda known after all these years it was fibro.
Thank you for letting me know about the hair loss. Actually I was only diagnoised two yrs ago with fibro yet for almost 18 mos prior I was going from doctor to doctor getting about $10,000 done in testing before they figured out it was fibro. And for 6 months before that I kept mentioning to my family doctor about my hair coming out in handfuls each time I shampooed and that it was getting thinner. I used to have beautiful long thick hair, now it is thin and I keep it only to my shoulders. I also have a slight balding spot in the front so I try to part my hair on the side and have bangs that come from behind to cover it up. I’ve always still wondered why my hair continues to fall out-not by the handful anymore but a little each shampoo still and is so thin and they do hormone tests on me every yr. Thanks for the information now I can come to terms more with it.
Wow, I’m glad to know that I’m not crazy…lol! I noticed my hair started falling out a little over a year ago when I was in a very stressful situation. I have Fibromyalgia and Chronic Fatigue Syndrome. It did get better after I got out of the stressful situation I was in. I have noticed that it gets worse if I stay stressed for awhile. I’m just glad it grows back because I’ve always had thick, naturally curly hair and would hate to lose it all.
I have a had hair-loss period only once. It was probably in the first year after I found out I had FM. I was scared to massage my scalp too much when I was shampooing. I was scared to brush my hair for all the hair that was left behind in my brush. But it only lasted a short while and all my hair grew back. Thanks Adrienne for letting me know what was going on.
I have chronic fatique and fibromyalgia that I have lived with for 20+ years. I was in so much pain that I could no longer walk. Two years ago I decided to research the symptoms myself because the docotors weren’t helping at all! What I found was amazing! Lyme Disease! Although I was tested with the standaard Eliza Screening, negative, it didn’t show up until I was tested with the Western Blot. Since then I have been working very hard to overcome this debilitating disease. It can cause CF and Fibromyalgia in addition to arthritis and peripheral neuropathy. I also had massive hair loss, confusion, panic attacks, etc.. I had my B12 checked and it was very low, something about the infection steals this. Once I started taking B12 shots my hair shedding lessened dramatically. My panic attacks are less frequent and I can remember more day to day things! Oral B12 doesn’t help as I can no longer absorb it thru the intestines.
I have CFS and Myofascial Pain syndrome and have experienced severe hair loss. ALl of my thyroid tests appear “normal” although a CFS/FM doc told me I had too much reverse T3. However, he has since disappeared and I haven’t found another to dx and treat it.
I have been losing hair for years exopecially in front but all over my head too. I am sure some of it is due to menopause and the male hormones taking over.
I usually wore wigs when I went out for the last couple years. My hair was very blonde, turned darker and a different texture.
Unfortunately, most of it has not come back but I have been taking biotin, silica and using an herbal remedy which has helped in some areas that were completely bald. My hair has lightened up and is a better texture. I don’t think it will ever be the same as it was though.
I have had fibromyalgia for 40+ years. My hair started
falling out when my doctor gave me methotrexate. I
started taking biotin, but doesnt help. I live in Florida
and my fibro is horrible now because of all the cold
weather, I guess
I have had bad hair loss for several years. I have very long hair and wear it up in a bun. I’m afraid to cut it shorter for fear I’ll have nothing for a bun anymore. I really don’t see the growing-back part. It just seems to be getting thinner.
Well, my gosh-I’ve had fibro for 40+ years, and just keep learning things I didn’t know, like hair loss being a symptom. I have it and so does my daughter who has fibro. I’ll keep watching to see if anyone has any helpful ideas on what to do.
Charlene, would appreciate your help. Can you tell me your Biotin and EPO dosages please ? Thank you.
I am an african-american single mother and I too was confused by the symptoms. I wondered why I had so much pain and stiffness. But when my hair began the fall out like rain drizzle, I became frantic. Everytime I combed my hair, it shedded like leaves and when I would touch it, just the same. I thought I had been diagnosed incorrectly. I wondered if it was lupus instead. These two illness are similar and almost somewhat in the same class. Thanks for the information. I am not happy to have the hair loss but glad that its nothing worst. Now I know the hair loss may be from the fibromyalgia. Thanks alot
I’ve had Fibro for about 15 years. My hair has been falling out for the last 4 years. It is now half as thick as it was, its pretty horrible and makes you wonder if its ever going to stop. Everyone else thinks it looks okay and they say everyones hair falls out, and when I say not like this I think they think your over reacting. I am going to try the Niotin and evening primrose for the next few months and see if I have any results..
thanks, informative read. i have been trying to deal with my gradual hair loss for quite a while. the best thing i have found so far was the book at baldnesscuresecrets.com, they have some tips that dont use rogaine and work well
Also try sleeping on silk. Helps you sleep better plus it also helps you keep the hair you do have. http://www.essenceofsilk.com has the best products.
Thanks for the information, Charlene! Could you let me know your Biotin and EPO dosages also.
I used to have a lot of thick hair. Hairdressers would comment on it. My Aunt, who had thin hair, would comment on it. Now my hair is half of what it was. Everyday, I notice quite a lot falling out. My hair doesn’t look healthy/nice either. People say, “it happens as you get older” or “use ______ on your hair, to make it look better”. I thought it might be a fibro issue, this confirms it for me.
I have had fibro for about 16 years and I’m having the same problems as the other gals with thinning hair—I was told just yesterday to take 5,000 mgs of biotin so I’ve read up on it on internet and I’m gonna get some this week-end. good luck everyone.
I was diagnosed with fibromyalgia about eight years ago. I have recently with the past six months, noticed enough hair loss that my hair was noticably thinner. I never knew it was a symptom of fibromyalgia…thanks for getting that information out there.
I thought it was interesting when I read your article about hair loss and Fibromyalgia and yes at one time though I did think maybe it was lupus. I am also being treated for epilepsy which one of the medicines for also caused hair loss among other more serious problems. I have quit taking that medicine because of those more serious problems. Has fibromyalgia ever caused total baldness in any cases or do you know?
I was diagnosed with Fibro 2 months ago. I was wondering if the meds were making my hair fall out….Which I am sure it very well could still be. Then again, I was thinking about it and it was falling out before I started the med.Thanks for the info!
This information has been both helpful and comforting. I was diagnosed with FMS more than 12 years ago. In the past 2 years my flares have been more frequent and far more harsh. I noticed the pattern that during or shortly following a flare, my hair would come out by the hand full. It is helpful to know that I am neither crazy nor alone. Thank you.
I’ve searched the internet for years regarding symptoms of fibromyalgia. Never came across hair loss. Just today I decided to search fibromyglia+hair loss and came across this site. Thank you to everyone for their comments. I guess it won’t stop the hair loss but it is so helpful to know one isn’t alone with the problem.
This message is about Karen Clinton reply wonder why u did not share herbal remedy that was able to grow hair on bald spots.Would appreciate any help I could get
Thank You