Hair Loss & Fibromyalgia
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 think 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!
Suggested Reading:
Photo © George Doyle/Getty Images
I’ve had quite a bit of hair loss, but then, I also have hypothyroidism.
It’s important, if you have FMS, to have your thyroid checked, as many of the symptoms overlap. If you go to drlowe.com, he’s got some good research there about using thyroid to treat fibromyalgia. It made a huge difference in the severity of my sypmptoms. What I think is that some folks have untreated hypothyroidism, and recover fully with thyroid treatment. Some have both hypothyroidism and FMS, and so symptoms are better with the thyroid treatment. Others just have fms, and the thyroid doesn’t help.
Hair loss (especially thinning eyebrows) is a big sign of hypothyroidism, as is dry skin, menstrual disturbance, pain, tiredness, temperature intolerance, depression, and bowel problems. Which, as you’ve noted, are also common symptoms of FMS.
So, that’s my soap box for the day. If you have FMS, make sure you get your thyroid tested to make sure you don’t have concommittant hypothyroidism.
Why are my comments not showing on here? I have left 5 now, and not one has showed up.
Jodith,
Thanks for bringing up this point! I had hypothyroidism for several years before fibro hit, and when the first fibro symptoms cropped up (fatigue, mental fog, hair loss), I went to my doctor certain that I needed to up my thyroid hormone. The symptoms are extremely similar.
You’re right that everyone with fibro should get their thyroid tested, and probably re-tested every year or so.
My hair comes out in handfuls! All I have to do is touch it and it falls out! It’s the pain and the fatigue that is unbearable and so invisible that I cannot stand it any more!
mine definately thyroid. make sure test is thermometer under arm in morning as only test that works. also suggest using thyroid supplement instead of drug as drug will make thyroid weaker and weaker.
I had Graves disease and had radio-iodine for that. So now I’m hypo. I have had hair loss for years before the Fibro hit. There was no solution for it. Tweaking the thyroid up or down didn’t seem to help. The only thing that helps is minoxidyl. The stuff really helps. I no longer have to part carefully and fear a windy day. I don’t know if the stuff will do any harm but what the heck. It’s a personal thing. If it is important enough to you, you might want to try it. If the thinning hair doesn’t bother you then why take a chance that this stuff might not be good for us Fibro people?
I have both Fibro and lupus. I lost all my hair for about 20 years. When I stopped working and I was less stressed, my fibro got better and the hair grew back.
I have had the same thing happen, nothing is wrong with my thyroid. Its been tested. I do have fibro. I pull all my hair back in to a pony tail and I have all these little whisps of hair sticking up all over my head. I smooth them down spray them in place and hope they stay down.
This makes me think that I have had FM for much longer than I thought. I went through a period of time, before getting diagnosed with FM/CF, where my hair fell out, leaving bald spots on my head. Many times I could cover the bald spots with my hair, which is very thick, and still is. One time the hair fell out at the front of my head and I had to wear a wig. Weeks, sometimes months would go by before the hair would grow back in. I still worried that it would not. I thought it was stress, and it may have been but now I think it may have had something to do with the FM. I do know that the doctors could not give me a satisfactory answer about the hair loss and its causes. We FM/CFers sure have a multitude of odd symptoms.
I have the exact same problem… every month or so my hair falls out and then I have this crazy little halo of fuzzies till it grows back out
I can’t tell you how happy I am to see these comments about hair loss. Thank you so much for having these available. I don’t know what I’d do without knowing there are others that are going through the same thing.
I have severe & what I call “full blown fibro”. I have many symptoms and they’re severe. I swear the older I get the more the symptoms pile up! I’m 54 and have had fibro for 15 yrs now. It’s a terrible way to have to live, okay I’m getting off track here~
My hair has been falling out for months!
I’ve gone through periods of hair loss in my lifetime but never has it lasted this long. 6-9 months now! It’s got me so worried that I’ll be bald, great!broken & bald!
My hair is noticably thinner to me especially on top it’s very thin to start with. I do see some of those tiny hairs starting stick up so that’s a good sign you say? I will probably calm down now knowing that my hair loss is temp & it will come back. I sure hope so!
My doctors haven’t any help for me except to use that OTC hair regrowth crap! I dont want to use that unless absolutely necessary. Thank you all so very much! God Bless
Add me to the list. I was hoping that starting medication for my hypothyroidism would help the hair grow back, but it hasn’t. My hair has always been thin, so losing some, especially on top, is noticeable. At least, it is to me. I’m using volumizing conditioner, and it helps a little. Just one more hassle for FMers.
Here’s a fun one…
Periods of high stress trigger significant flares, right? And one thing known for high stress is planning a wedding. Yep, you guessed it, months before my wedding I started finding lots and lots of hair in the shower… and I PANICKED!!! I thought I was allergic to the shampoo, but even after I switched shampoos my hair kept falling out. Before long, I was convinced that I’d have bald patches on the one day my hair actually mattered!! Thankfully, I had a lot of hair to start with and a brilliant friend doing my hair. And I never developed any bald patches. Looking back, it’s kind of funny…
Thanks for bringing up the hair loss up! My hair was falling out when I was first ill. One of the first doctors who diagnoised me CFS had not seen this symptom before. After listing all of my many symptoms I was already feeling embarrassed when he said “well, I did read about hair loss in a book…” That didn’t make me feel any better! Fortunately it has improved from 5 years ago;)
My hair is so thin in front it looks horrible! i have stubbles of new hair but they don’t grow! the hair on the back of my head is full and will grow but it won’t grow very long. I was hyper and now hypo after I had 2 of the nuclear med to kill off my thyroid. The only thing that helps me not to be completely bald is Proscar a fifth of the tab daily. I know it is a mens’ med but cant remeber for what. What is minoxydl? I noticed someone mentioned that. I thought of taking the rogain for women, although even the generic is too much to buy because once you start you have to continue to do use or lose your hair again. oh i do also have FMS. So what is the answer to this dilemma?
Thank you so much for the hair loss article!! I was told six years ago I had alopecia and looking back now it co-incides with the onset of my FMS. I have spent years trying to get a proper diagnosis & finally 6 months ago someone actually listened to me & I was diagnosed with FMS. My hair fell out completely at the back at the start but now I have thin hair on the top of my hair, thick at the back (where it first fell out) and bald patches above my ears. I’m always conscious of these patches & constantly asking everyone whether they can be seen. Its very frustrating. But NOW I realise after your article its my FMS and I’m going to be much more relaxed now I know the hair follicles arent going to be damaged & I have to hope that one day it’ll all come back. All these symptoms are so annoying. I get very down & feel like nobody understands and if I ever say its because of my fibro I feel like I’m moaning and they feel like I’m after sympathy. Sometimes I just want to hide away at home all the time. Please can anyone help me come to terms with FMS because I’m finding it very hard. Thanks xxx
Thank you so much for this article. I have FM/CFS, and recently my thyroid became a little low–just a little, not enough though to explain the severe hair loss I have experienced. In the past year, I have lost at least half my hair–and I didn’t have much to begin with. I also have that fuzzy halo of either broken hair or new hair growing in.
I also started to think it was lupus, even tonight as I was doing searches online…until reading this. I’ve had FM/CFS for almost ten years, with light hair shedding every now and then, but recently and quite suddenly I have lost so much it became a crisis.
I lost too much hair. I was diagnosed with anemia by a doctor. I ended up with fibroids and had surgery since it was just huge and caused bulging on one side of my lower abdomen. I thought that surgery would for sure solve my problems and I would be somewhat normal again as ever since I became a teen, I’ve never been 100% well. I’ve always felt a bit ill and chronically fatigued. I thought I was just lazy and if everyone else could wake up early and not be depressed then damn it, so could I. After a few years from the surgery though, I didn’t get any better and I was still feeling ill. I’m at my worst now with fatigue as I can sleep forever with no problem. My knees pop all the time now as I’m in my early 30s. That should not be happening. I’ve actually had those chest pains they talk about. I had them when I was a teenager and no doctor would listen to teenager on public medical. I had to leave with those chest pains and learn how to manage them. I learned that when I was highly stressed they would happen. So much so that one day, I almost didn’t make it out of one episode alive. I was on the floor and I knew I had to get into a sitting position and lean forward to relieve the pain. Not just shart shooting pain, but pressure on my heart. I almost didn’t make it from a lying position on the floor to sitting up. All the while I was hoping the pressure wouldn’t just stop my heart or the sharp shooting pain would be the one to make it stop. I eventually made it grimacing all the way as I eased my way up clutching my chest. You see, when the pain first started, I was immobilized. I couldn’t move at first. I also became aware that I must move and found it difficult to do so. Anyways, after that surgery on my fibroid and doing follow-ups, doctor bills were overwhelming even after my work insurance paid. I had a specialist that was only focused in gyno of course and she promised I would get better if I stuck with her. I knew that wasn’t true and felt she was just greedy for money in some aspects as her office was always packed. So, I had to figure this out on my own or I would end up in the poor house or just continue to be dismissed by doctors not really listening to me. I did eventually find a natural remedy to keep the fibroids away. One battle I won. However, I went from diagnosing myself with PCOS, to diagnosing myself with hypothyroidism. The other gyno felt I was wasting her time with the PCOS deal despite the fact I had the symptoms and told me to go to an endocrinologist for the Hypothyroidism. The endocrinologist wants to retest me in September since they hypothyroidism turned up negative. Although, I did tell him I think I had lupus as it would explain the inflammed pancreas the doctor told me I had at the hospital. Of course those docs at the hospital thought I was an alcoholic and needed AA because of course they didn’t see any other way I could have possibly had an inflammed pancreas. Before that of course, I landed in the hospital with an awful ulcer. I totally forgot about that since I seemed to get something all the time. I was even prescribed medicine for it. Thank God that cleared up. The lupus deal would also explained the chest pains as the lining around my heart was most likely inflammed. The lupus deal would explain the tendonitis I once developed and had to wear a wrist brace for weeks. Thank goodness our computers were down for a week or so that allowed it to clear up along with some home treatment of hot water on my wrist area. I thought lupus also explained the feeling I had for a couple of days that I was drowning internally. See, it didn’t feel like asthma that I experienced as a child. I felt my lungs filling and I felt like I was going under water and I was breathless walking down the street. I found out that it’s called Pleurisy. I thought lupus explained my hair loss. My hair went from being sooo pretty, long and thick like it was when I was a child to being dull, brittle, barely growing and falling out at a rapid pace. There was this residue in my hair follicles. It was a clear liquid that was attached to the roots of my hair. If my hair fell out, I could pulls this frozen thin liquid attached to that hair strand right off. I thought lupus explained my dry skin and my nails that had the vertical ridges in which I was also embarrassed of. I didn’t know if lupus would explain my eye sight going from 20/20 when I was a teenager to can’t barely see a person’s face in front of me. And wearing contacts, my eyes would be so dry that they would just pop right out. I wasn’t sure if lupus explained why I was sooo sleepy all the time. I didn’t have energy for anything. I started exercising and actually forced myself through some excruciating workouts. Sometimes I had energy where I could run at least 30 mins. Other times, I could barely run 5 mins. And that’s on a treadmill. I can’t run on solid ground. Does lupus explain why I had headaches as a child though? Does it explain those slicing pains in my groin area right in the joint area of my thigh that I had when I was a teenager? Does lupus explain the vulvodynia? Of course I learned that’s what it was as of recently and not a yeast infection. Since my last doctor’s visit, I’ve been doing more research. Would lupus explain why I couldn’t concentrate or focus? Why my skin didn’t heal well. Why I couldn’t remember people. Why I was missing pieces of memories out of my life. I was always in a fog. Even as a child. I was smart, but I was slow to the answer. Always feeling like I’m going in slowmo.Did lupus explain my IBS? In which recently I found that ibprofen helps to dissipate IBS not caused by food reactions but moreso caused simply from a tightening pressure placed on your colon and stomach. Why did I have all these symptoms associated with these various disorders? Why did I lose all my hair? It’s been over 10 years now since this has started with my hair and I lost all my youth to this problem. My teenage years. My 20s. I’m now in my early 30s. Now I do know and I’m angry for so much wasted time. I’m sure so many women would mistaken it for PCOS like many doctors would. But it’s not. It’s Fibromyalgia. A simple thickening of the serous fluids which disallows the fluid to continously move around your vital organs. Now, I wonder if my vegetarianism made it worse since I did not eat meat. Your body needs hyaluronaise enzyme to break down the hyaluronan. If your body doesn’t have enough of the hyaluronaise enzyme to break down the hyaluronan which thickens the serous fluid in your body then you began to experience Fibromylagia one symptom at a time. Hyaluronaise enzyme is found in great quantities in bovine testes as I learned. Now I’m just wondering if taking the bovine testes extract in a powder form would help my body to create more of the hyaluronaise enzyme to break down the hyaluronan. I wonder if taking cough or nasal suppressant medicinces when I was sick made my condition worse? I wonder what it could have been? But I can’t dwell too much on that now. I’m going to concentrate on taking a little sea salt every day to loosen the thick serous fluid. That sea salt really does give you energy again. I suppose that’s what made my serous fluid move around before giving me alert energy I never really had before. I might start myself on drinking a lot more water and cutting out caffeine. Maybe laying off the corn syrup found in so many of our foods. I’m sure there won’t be a magic pill to make this neck pain go away, but I’ll continue to take over the counter ibuprofen when I feel like the pain is unbearable and taking salt to get the acid levels down and loosening the serous fluid. I’ll definitely start taking more protein supplements too. I’ll definitely have to be brave to take the bovine supplement that’s for sure.
i’m only 23 years old, but i got diagnosed with fibro when i was 16. last night after i got out of the shower, i noticed that my hair seemed a little thinner on top. i freaked, and my roommate assured me that my hair was just falling into place differently (a few weeks ago i got bangs cut in, and so my part is different). but i got on here and did some research, and i’m praying more doesn’t fall out. thank you for this article and these comments. it makes me feel a lot better, because i know i’m not alone.
The scalp condition you mention is something I was just diagnosed with last month. It is seborrheic dermatitis (sp?) and can affect the sides of a person’s nose, the inside corners of their eyebrows, and along the front edge and temples of the scalp, along with the back of the scalp. I have had it for years but was too embarrassed to seek treatment and didn’t know it could be treated with a prescription cream. I had such a bad flare up last month when my children started school that I had to finally seek treatment. I have to wash daily with Head and Shoulders to keep my scalp from breaking out. It is stress related for me.
I am also losing my hair (have been for almost 3 yrs). I have asked all my Drs. about it and nobody can give me an answer. They all say it’s hereditary ( it isn’t – not one female in my family has had thinning hair) and it is Androgenic Alopecia (which means they don’t know what is causing it). Fortunately, I started off with extremely thick hair, but now it is getting pretty thin on top and I’ve noticed a slight receding of the hairline in front. I am so frustrated over my Doctor’s lack of knowledge and willingness to research it. I even went to a Dermatologist about it. They all just say if it bothers me to start using Minoxidil, but that is a lifelong commitment and I’m only 55 (just turned).
I had to badger my Doctor for months to test my thyroid level and, as I thought, it was low, so I have been on meds for about a year now and that hasn’t made any difference in the hair loss.
I also developed seborrheic dermatitis on my scalp and the sides of my nose.
Like many of you, I have had major and minor hair loss. I also have hypothyroidism. The more stressed I am, the more I lose, so I try to work on the stress. Thankfully I was blessed with too much hair to begin with. Yet everyone comnments on the shine and health of my hair! Sometimes you just have to strategically fix your hair and move on, but to fix and prevent more loss, I take biotin (a whopping dose too 2500-5000 mg/day) which is good for hair, skin and nails. I also take a multi-vitamin with extra E. I use Nioxin (shampoo and cond.) for thinning hair when it gets bad. Expensive, but I don’t use it often. Use volumizing shampoos (Aveda is great and made from plants) which plumps up the hair that you do have. I am gentle with my hair. I massage my scalp in the shower every day with fingertips only, use quality hair products and exercise and eat a healthy diet. Since I have had to stop working, a lot of stress has been eliminated, but other stress has taken its place. Still have lots of flares–in one now with lots of chest pain (costochondritis) and horrible neck and back pain. Hope it moves on quickly. Wishing all a painless day!
YES !!! My husband lost his job about a month ago and I was panic stricken. I noticed my hair was falling out all over the place and didn’t know why. The stress has been awful with this job loss and the additional expenses. I never linked the stress and my FMS with a hair loss connection. I feel so much better now with the hope that it will go back to it’s original thickness.
I am Black female and have noticed over the last few weeks that everytime I brush or comb my hair, there is a lot of it in the brush, comb or on top of the counter top. This is definitely different from breakage that I used to experience when I used to color treat my hair, so I became a little concerned, especially after it had been growing so well. I tend to shed a bit in the winter months, but it has not been cold yet! I too, was, may still be, a bitconvinced that I may have Lupus. Prior tests have been negative, but I’ve just been retested, so we’ll just have to wait and see.
What kind of meds are you guys currently taking to manage your pain and other symptoms?
I’ve not talked to a doctor about this yet… Ever since I was a kid I had weird tenderness and spot skin and joint sensitivity but never knew what to make of it. I’ve experienced weird hair loss and regrowth my whole life as well — so much so that every stylist who’s seen it remarks on my huge abundance of “baby hairs”.
Often freshly-sprouted hairs that follow a mass-shedding come off as well, appearing under my fingernails as teeny pinhead-sized sprouts. These hairs (whether they stay or fall out) are different than the ones that grow in more naturally: They have thin, wispy ends followed by a thick bulge before the hair begins to grow normally. If I don’t trim the ends of the ones that stay they look like tiny hooks and tend to “fly-away” more than the rest of my hair.
Despite the weird way my hair grows and falls out I keep my hair as long as it will grow. It’s so many different layers that when I pull it back into a ponytail my whole head looks a bit like a length of fuzzy yarn. I gave up on hair styles and trendy cuts years ago. I wear hats when I go out which stops me feeling self-conscious.