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Adrienne Dellwo

Hair Problems in Fibromyalgia

By February 9, 2012

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Fibromyalgia affects everything, from your hair to your toenails. And if you're thinking, "Hey, I wonder if my hair problems are related to fibromyalgia," there's a good chance they are.

The biggie is that we're prone to hair loss - which, fortunately, is temporary. For most of us, the hair falls out more when we're going through flares or periods of high stress. It does grow back, which is good, but often leaves us with wispy baby hairs that make it look messy when we pull it back. You might also lose enough that it's noticeably thinner.

But I started thinking about other types of hair problems when I came across this recent comment from a reader:

"I keep my long hair braided or in a soft bun, because my hair moving around causes pain. Can't pull it in a pony tail, for the same reason." -Robbie

I'm sure this issue isn't hers alone. I know fibromyalgia has been a big influence on my hairstyle at times.

The picture of me on this page (which is badly in need of updating) shows what I call my "too sick to do my hair" hairstyle. As my functionality improved, I changed it to something that takes a little work, but not much. And still, I have a wide selection of hats for days when I'm just not up to styling it. I have a huge problem in the summer, because my forehead sweats excessively when I'm warm (another fibromyalgia symptom) and undoes my do in a hurry.

I've read dozens of comments from people who say they can't hold their arms up long enough to style their hair, which is a common complaint in chronic fatigue syndrome, as well.

Barrettes, head bands, clips, etc. often just look too painful to even consider putting on my head. And then there's the styling products - a horror for anyone with fragrance or chemical sensitivities!

It may seem like a hairstyle is inconsequential when you've got a few dozen symptoms to contend with, and really, it's way down on the list of my concerns. However, not being able to style your hair like you want can have a big impact on your self-esteem. It can also be a reminder of all that you've lost to illness.

What has fibromyalgia meant for your hair style? Has pain, energy or hair loss been the bigger factor? What emotional impact has it had on you? Leave your comments below!

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Comments
February 9, 2012 at 6:36 am
(1) Cathy says:

Even before I was diagnosed I had a hard time “doing” my hair. I went through a period of depression and hated the way I looked, so out of desperation, I shaved my head (my hubby helped me). When I felt better, I loved the buzzed look so I kept it. It’s been about 3 years ago since I did that. I wear wigs to work and rarely have bad hair days, no matter how crappy I feel.

February 9, 2012 at 6:54 am
(2) Shannon says:

Since moving to very humid Toronto, ON, I often regret having long hair in the heat of July and August. I cut it short within the first few years here because the nape of my neck was always soaked because of my very long hair.

I regretted it. Being a heavier woman, I just didn’t suit a short style in my opinion. When it grew back I vowed never to cut it short again. Now that it’s so long that I can almost sit on it, the difficulty in keeping it styled is a real pain in the behind. I’ve considered a severe change, again.

With Fibromyalgia and probably CFS too, I find it so difficult to have a shower, let alone wash and style my hair frequently. I’m fighting with myself in getting it cut much shorter but I suspect that will be what has to happen sooner or later. There are many days where it *hurts* to brush it out or put it in a pony tail. The less of it there was, the better.

February 9, 2012 at 7:57 am
(3) Karen says:

Thanks for this article! I started having my very-thick hair cut shoulder length & thinned out in order to make it easier to “do”. I don’t complain about having thick hair, but if I don’t get it thinned, my arms wear out before I can scrub my way to my scalp, much less try to “fix” it! As it is, if I am doing my hair & trying to look nice, I have to take a break or two in order to not sweat all my hard work away! =oP

February 9, 2012 at 8:56 am
(4) Chrissie says:

This explains A LOT! My hair is thinner, won’t hold a style (not that I have any particular style), and falls flat in a matter of minutes…after all that WORK! I’ve also noticed that it’s brittle, even though I don’t use chemicals (color or perm). I can now go to my hair dresser with answers and see if we can’t figure something out. Thank you!!

February 9, 2012 at 9:07 am
(5) Jackie says:

I never understood why it was so difficult for me to blow dry or curl my hair. Everyone else did it just fine. But so many times I couldn’t hold my arms up long enough to get it done. The fatigue was ridiculous, my muscles strained and felt like they didn’t work. I thought to myself what the heck is wrong with me. Really, I can’t even hold my arms up to curl my fricken hair! I too cut my hair really short so I didn’t have to do much to get it too look somewhat good. Not, what I wanted but it was necessary.

I still have flare ups at times but I can honestly say that my hair is about shoulder length again and I style it and I love it. When I get the flare ups they are not nearly as bad or as long as in the past and I attribute that to changing my diet and taking a regime of nutritional supplements daily to fight the Oxidative Stress and inflammation that causes allot of our symptoms. I am still careful not to overdue it when I am feeling good (which is most of the time now) and I am careful of the environment that surrounds me but truthfully I have my life back. I am so thankful for this blessing and I thank the Lord for my good health. Good health meaning better than it was before.

Because of the improvement in my health I have continued on a path studying Nutrition and diet and work in health coaching. I can’t tell you all enough how important your diet and nutritional supplementation is to improving your CFS/Fibro.

God Bless,

Jackie

February 9, 2012 at 10:37 am
(6) christina booty says:

I have bald spots in my hair. Often times It cant even touch my hair it hurts so bad. Oh and washing it when it’s like that you can forget it,I cant even brush it. Over time I have lost over half the thickness of my hair, I tell my husband my hair hurts. he replies how cian your hair hurt. People just dont understand.

February 9, 2012 at 12:12 pm
(7) Rachael says:

I have found that supplementing with MSM (Methylsulfonylmethane) an organic form of sulfur has improved not only my hair, but my skin and nails. It can be found in most health food stores. I live in Canada and buy the generic brand from Walmart; very inexpensive.. It is needed for the synthesis of collagen and is prevalent in keratin, a tough protein substance necessary for health and maintenance of the skin, nails and hair. It has many other benefits that you can read about in the link I provided below.

http://www.all-natural.com/msm.html

February 9, 2012 at 3:22 pm
(8) Felicia Fibro says:

My hair used to be really thick and now it is thinner, but ok. I never had problems with loosing hair until my whole body freaked out while in Switzerland (changing elevation drastically, multiple times a day). That was 8-9 years into having fibromyalgia. Ever since that trip I am go through phases of loosing hair more often than not.

At first, it had an even bigger impact on me, emotionally. I even wrote a post about how loosing hair is one of those things that it is hard for others to understand the impact, unless they’ve gone through it.

February 9, 2012 at 5:49 pm
(9) wildpoppy says:

Every thing you said i have suffered…………..thank you….. x x x peace and love x x x poppy

February 9, 2012 at 9:07 pm
(10) Misty says:

I have days where I am thankful I HAVE hair, but I can’t stand for it to touch my face, neck or scalp. I have gradually shortened it into a style that is very easy and looks decent even on days when I don’t feel like doing anything to it.

February 9, 2012 at 9:20 pm
(11) Pictishgirl says:

I put off having my hair shampooed and cut, because having someone else wash, brush and style is excruciating. I’ve finally learned to say “I have a VERY sensitive scalp.” That is quicker and easier than explaining (for the whole salon to hear) that I have fibro. Guess I just don’t want that ‘whiny hypochondriac’ label that fibromites often get stuck with.

February 9, 2012 at 9:22 pm
(12) Theresa says:

I”m glad I’m not alone on this . Not that I wont’ anyone to suffer from just the task of trying to keep my arms up to do my hair . It makes me feel like I’m not crazy, and their are other people just like me out their. When something so easy for everyone is so hard for me at times, people just dont’ get it. They think pain is pain, and it’s not this is so different than normal pain. Normal pain can go away with tylenol or pain med, my pain never goes away with any kind of pain med. Maybe some relief . But, never completely pain free. Soft hugs to all my chronic pain friends.

February 9, 2012 at 9:25 pm
(13) Christina says:

~My hair has been hurting since i was just a lil girl…it would be so painful just for my mother to very gently comb my hair or curl it…or use rollers. I could not put it in a pony tail because it would really hurt. Of course, i was young then…and didn’t get diagnosed til about seven years ago. Now it hurts my arms to try to do my hair. Even just putting hot rollers in or crimping is painful. The crimper and curling iron even makes my fingers hurt and go numb. It’s definitely not easy to have to deal with this…especially for many of us women who really enjoy styling our hair. I have to take many breaks when i decide to curl or crimp. Even blow drying my hair is tough. I would love one of those head dryers that they have at salons for my home use…it would really help!

~Hair loss too…stress…anxiety…no sleep…constant chronic pain…its all been an entire lifestyle change for me. I am also a singer…and that too is difficult to hold the mic…its difficult to play the piano…and im a writer as well…i hope to encourage others thru my own experiences in life…

~i will be praying for all of u!!…we can do all things thru Christ who strengthens us!!…God Bless u all!!~ <3

~love…
~christina~

February 9, 2012 at 9:26 pm
(14) Lashelle says:

My hair started coming out in round patches… about 15 years prior to my diagnosis,I was told it was probably a fungus… needless to say, it probably wasn’t. The reality is that I have always had this thick head of hair, and everyone always said, you could lose 75% of your hair and you would still have more than everyone else… Well, they were right I have lost about 50% of it, and I still have pretty good hair, but, the ponytail thing is right.. I can’t stand it it will bring on a headache, or even a migraine if I keep it in too long. Forget a head band, or the big barrettes.. The dr. has said that I have lost quite a bit of hair, but he can see the new hair growth…

On the other hand, my 24 year old daughter has went completely bald. No one knows why…. I believe it is due to an auto immune disease of some sort… Alopeacia… but also she is having some joint and muscle pain…. fibro? I don’t know, but if anyone else has seen or hear this, let me know… She also has had the worst case of ecczema that they have ever seen, she has it from the top of her head, completely covering her face, arms, and splashes of it on chest back, legs and stomach and buttocks… also, she has lost ALL of her hair…. EVERYWHERE! no eyebrows, eyelids… etc… its a horrible situation for her….

February 9, 2012 at 9:27 pm
(15) Cheryl Napfel says:

For years i have been saying my hair hurts only to have strange looks given to me !! I love long hair and remember back in the day Mom getting it cut off below my ears !! I cried !! It is now shoulder lenghth and sometimes i just can’t tolerate it !! Just to touch my neck or face is enough to set me off !! Honestly i think i have had Fibro longer than i was diagnosed !!

February 9, 2012 at 9:31 pm
(16) Brenda says:

I was diagnosed with Fibro in 1995 and have lost a lot of my hair. It has thinned a lot. Also, my scalp hurts so bad that I can’t touch it, making hair brushing or shampooing impossible. I also have GERDS and a history of stomach ulcers so I can’t take NSAIDS. I really suffer with this syndrome.

February 9, 2012 at 9:31 pm
(17) Debbie says:

I was dx with Fibro in 2000 and all the comments I just read are so so familiar. I also have hypothyroidism, treated with medication so I just kept attributing my hair loss to that. My hair comes out each time I was it by the HANDFULS (and it also causes problems with stopping up the bathroom drains). I read the comment that said that it does grow back and I am so glad to read that! I had decided that it MUST be growing back since I haven’t become bald despite losing handfuls of hair almost daily. It is amazing how just knowing someone else REALLY does understand can make you feel better about things. I hurt and I ache and I sometimes wonder if it will EVER be any better but I keep praying that the future holds better pain and fatigue control or hopefully a cure. Thanks for sharing your news with those of us who sometimes struggle not to fall into depression with this disease….

February 9, 2012 at 9:36 pm
(18) Paige says:

I didn’t know fibromyalgia was a cause of hair loss! I thought it was just because I was getting older! Now that I think about it, though, it was during whole stressful buying/moving house period that it got so thin. I hadn’t thought of them as connected before.

I can’t stand anything touching my head, just running my fingers through my hair is torture! I usually just braid it or twist it up in a low bun, held in place with one clip. It’s the most I can stand.

I’d like to have a simple, layered cut that would look good to just leave *as is*, but my hair is so curly I’d have to have some sort of styling product on it, and I can’t stand it! I sometimes threaten to just shave my head. ;)

February 9, 2012 at 9:40 pm
(19) vicky says:

Wow,I sure am comforted by these posts.I have been feeling guilty due to my laCK OF ENERGY AND THE PAIN AND FATIGUE IN MY ARMS TO MAKE MY HAIR MORE AGE APPROPRIATE~LIKE ONE POSTER I’VE WANTED TO SHAVE IT OFF,AND WEAR A WIG AS NEEDED.i’M MOVING SOUTH THO SO SHORT I GUESS IS THE WAY TO GO!!gENTLE hUGS TO ALLMY FIBRO/CFS COMMRADS!

February 9, 2012 at 9:47 pm
(20) Lisa says:

Wow! Yep, my hair hurts a great deal! I don’t wash it daily like I used to because I can’t move my hair it hurts so bad. I don’t style my hair even after I DO wash it because I can’t hold my arms up long enough to do anything with it. I typically put it in a very loose bun/pony tail or in a clip. I am sweating so bad after putting makeup on and doing my hair when I feel well enough to go “out”…. I feel as though I’ve stepped out of the shower or sauna.

That brings up another point. I wonder how many others are sensitive to hot water? Everyone wants to get me in a hot tub, but I can’t handle being in hot water for very long, and I certainly will NOT go into a sauna. Way too hot for me! I’ve tried hot mineral baths, but I am begging for an open window after a mere 5 minutes. :o (

February 9, 2012 at 9:53 pm
(21) Laura says:

I have days in which my arms are too fatigued to hold them up to do my hair. I use clips often to hold my hair up when I cannot style it, although the clips may give me headhaces. If I’m at work I bear through the headache or take Ibuprofen. It takes ALL I’ve got to get to work in the mornings; it’s such a true struggle. Also, if my neck is flaring it hurts to even tip my head to blow dry my mop. I have had periods in which I have lost a lot of hair but not in clumps which leave bald spots.

My fingernails go in cycles too. They grow out a little and seem semi-strong, then they become brittle and break one by one over 2-4 days. It’s sooo weird and very predictable. Anyone else get that?
~Laura

February 9, 2012 at 9:59 pm
(22) Lori says:

I finally gave up last summer and cut my shoulder length wavy hair into basically a pixie cut. It is so much easier on me.

Seeing my new cut a guy friend of mine asked “Do you like your hair that short?” (Translation:I don’t like your hair.) I said I did and explained why I cut it off. He was a bit embarrassed, apologized and asked me more about fibro. We had a great conversation and he went away with an education about this disease..

February 9, 2012 at 10:03 pm
(23) Lori says:

I too have been plagued with problems with my hair and fingernails. Hair falling out, being too thin. Fingernails peeling and being too thin. hair went from straight to massively curly and frizzy. Years back I was diagnosed with FM and went thru the mill of so called FM drugs only to discover 2 years ago I have a thyroid problem and the FM was just a symptom of that. So now that my Hypothyroidism is being treated by an endocrinologist my hair has grown back, my nails have grown and become thick. I also have to take supplements because my body was robbed for 14 years of vital nutrients thanks to my thyroid.

February 9, 2012 at 10:05 pm
(24) Barbara says:

Wow I thought I was the only one! I have pictures from a wedding a year ago that I hate . My hair looked so bad because of the flare I was in the middle of.I also love to rock a good hat. My coworkers have come to know that if I am rockin a hat its not a good day. They greet me with a smile and gentle hug and I power thru!

February 9, 2012 at 10:13 pm
(25) Jonikas says:

wow.. can I ever relate to all of your comments! :( My hair problems are just like all of yours. My hair hangs halfway down my back, and I love it… although I really can’t look after it anymore. My husband loves it and if not I would’ve cut it a long time ago. It’s also very dry (along with skin & nails) so I only wash it twice a week ~ even that’s hard to do sometimes. I keep thinking about getting a salon to wash/dry it for me, but I don’t get out much so I usually end up washing it myself. What I’ve found that helps me is showering at night where I wrap it up in one of those hair wraps and lightly comb it out in the morning. I have wavy hair so this actually makes it look more curly to let it dry overnight. My hair is really thick and takes a long time to dry anyways. I started it one night when I was too exhausted after showering to do my hair and fell asleep on the bed. lol It’s not too attractive but what can you do, hey? I simply cannot use my arms to shower AND dry/comb/use products in my hair all in the same day. Take care everyone <3

February 9, 2012 at 10:13 pm
(26) Jessica says:

I have always had trouble styling my hair, sometimes even washing it, because it caused so much pain with my arms being up. I also work as a waitress which leaves me in so much pain after the two days a week I work that I spend pretty much the rest of the week resting and doing whatever I can short of prescription medication to help with the pain and fatigue. Luckily, I have found that it doesn’t matter what my hair looks like; people (including myself) see me the same whether or not I have done anything to make myself “pretty”.

But my advice is to wash every two or three days (dirty hair actually looks a lot better than clean hair!) and if it starts getting out of control to just throw it into a quick, lose, messy bun. There are also so many styles right now that actually say the messier the better! So to all of us with FM, that is a good thing!!

February 9, 2012 at 10:20 pm
(27) Debra says:

Gentle (((HUGZ)))

February 9, 2012 at 10:28 pm
(28) Lisa says:

Wow! It’s so nice to hear that I am not nuts! I grew my hair out a few years ago and loved it long but it hurt to much, when it was up it ached and when you’d let it down it was crazy painful, even if left down to long, it would throb. So I chopped it all off, but short hair actually takes more styling on daily bases and I can’t lift my arms to blow dry or flat iron it for long enough to make it nice, so most days are bad hair days and I have to just be ok with that. And I have to be ok with a hair style that I don’t think flatters me the most for the ease of it. Oh and another thing, when’s go to the salon for a cut, when they wash my hair in the sink, my neck and part of head that sits on the sink feels as if was hit by a bat in the back of head for days after! Oh joys of FM! Thanks for this article.

February 9, 2012 at 10:32 pm
(29) Barbara Foss says:

Oh my goodness, I was totally unaware the Fibro could be the cause of my hair pain. Many of you exactly discribed the pain that I have experienced. I also find it difficult trying to style my hair. But, I am lucky that I have natural curly hair, so most days I can just dampen it and scrunch it into curls.. I also noticed the hair loss. That is upsetting to me.

February 9, 2012 at 10:34 pm
(30) Crystal says:

I too have Fibro, and have experienced the arm fatigue and the hair falling out by the handfulls. I ended up just letting my hair dry naturally because I couldn’t dry it anymore. And considering I can’t work, due to fibro and a work injury, I didn’t have a problem with it. I shortened it to shoulder length and had it layered. One thing I found out that helps me with the arm fatigue (and it adds a little lift at roots) is drying my hair while bending at waist with head down. So I don’t have to lift my arms and they don’t fatigue as fast! As I’ve always had thick hair, I know for a fact it grows back, but it sure is a pain to have to clean the darn tub drain after just washing it so the tub drains. :)

February 9, 2012 at 10:38 pm
(31) kay says:

Every single thing you said… YES~ My hair HURTS. I’m a hair stylist and my style is… wash it.. when I have to.. comb it… let it hang. On my good days, it gets pulled back a little, better days, and it gets pulled up better. Really good days and it looks almost normal. But I use no chemicals on it. No heat. And rub carefully. It not only hurts to fix it, but it hurts where it touches my body… it meaning, my hair AND my body. I won’t cut it because that only irritates everything and actually takes more ‘styling’. Check your thyroid if you have excessive hair loss. Even testing in the ‘normal’ range can mean you’ve got hypothryroidism. Especially if your skin is also dry. If your body functions dopn’t function properly… whether it should be daily or monthly. It takes highs and lows to be in a normal ‘range’. And I’ve found lots of us that need to be higher than where we test. Then it gets better~

February 9, 2012 at 10:38 pm
(32) Kim says:

Wow….I too never realized this was related to the FM. About the same time my pain got bad, 5-6 years ago, I started noticing handfuls of hair in my brush. Even worse when I shampooed it. Still happens now.
I thought it was so crazy I couldn’t make it thru shower/shampoo/blow dry/style without taking a break. Thank you all for sharing your stories and making me feel better!!

February 9, 2012 at 10:40 pm
(33) Cathy J says:

The morning of my very first BAD flare up, I awoke telling my husband I hurt from my hair to my toenails. He couldnt comprehend. It is so relieving to know it wasn’t my imagination yet scary to think what this disease can do to my body (and spirit) without warning.

February 9, 2012 at 10:44 pm
(34) Verla says:

I have so many of these issues. I tried short hair and I hated it. I felt like a guy and because my hair is really fine and very strait to me it looked horrible all the time. I’ve tried perms and so many cuts all have left me feeling lower and lower. My fine hair has been falling out making it seem even thinner. I have very greasy hair , I could wash it twice a day but that isn’t possible. I typically wash my hair everyday even if I’m bad because it makes me feel better, not that I have the energy to, some days, that is all I get done. The thing I noticed that no one mentioned is that my hair suddenly got almost all grey and doesn’t hold color well. I’ve gone through a ton of stress the last five years unrelated to the fibro as a 25 year marriage ended because of my husband having an affair with a friend of my daughter’s. I pretty much lost everything in a matter of a couple of years and having a hard time adjusting to my new situation. This condition takes away so much of your dignity. I’ve always placed my family and friends before my needs and now that I need help everyone has disappeared accept my kids and parents.

February 9, 2012 at 10:49 pm
(35) christina says:

when i first started getting sick, my scalp burnt like creazy, and some different pains also on scalp, thhat is wh i finally went to the doctor, then not mention what happen to my skin, stayed in bed for a year crying and just wondered what was going on with my scalp,my husband made an appointment with a surgeon, he said i had occipital neuralgia, and then later found out i had cervical spinal stenioesis , and then i told him about what was going on with skin it felt like something was going in and brning and biting me and alot more i cant describe, but the scalp was burning like crazy,it started to drive me mad, then since that moment i went down hill since then

February 9, 2012 at 10:51 pm
(36) sarenza says:

anyone with fibro also have white patches on their scalp.?

over the last 10 years my hair has thinned so much it is now very noticable, looks like im balding and im 30. i used to have so much hair it was so heavy i could not grow it past my mid-shoulder blades. now i can grow it as long as i want but it feels like my scalp is itchy or being pulled. i wear my hair up mostly so i dont have to deal with my hair. been told i have scorisis on mt scalp as well which sucks cause i cant do much to cover it up as its in my bangs.

February 9, 2012 at 11:06 pm
(37) Tara says:

I can so relate to this. The pain I get makes me feel so sick, and affects my whole state of being. I try to take my hair out of the ponytail and braid it, but somedays it hurts just to touch it. Somedays I wish I couold leave it down all day. What has helped me is tying a gem called fluorite to my hairband or scrunchie. You could even lay it over a sore spot on your head and do your scarf wrap or put a hat on. For some reason, fluorite has helped me a whole lot. It’s the only thing that helps. If anyone else has a better tip, please share. I could use as many as I can get.

February 9, 2012 at 11:35 pm
(38) tracy says:

My hair was always fine but now I lose strand after strand and they drive me crazy on my back when they hang there. I am itchy enough thanks.

February 9, 2012 at 11:41 pm
(39) june says:

my hair texture has changed and is more apt to be “sore” at times, i can’t keep my arms up to style hence I keep it short!

February 10, 2012 at 12:03 am
(40) Val says:

I keep my hair short and do get a perm ever so often. It’s been a lot better since I went on Lyrica, But my nails have suffered and even with all the suplments I take and things I eat to help them they still are thin , peel and crack. I have to keep them cut short.

February 10, 2012 at 12:34 am
(41) Sue says:

Thank God i thought maybe honestly i was abit crazy over how much my hair annoys me and makes me uncomfortable in a painful kind of way. espcially if i let it get too long, which i do because on my days off i would rather sleep than go get it cut.Its nice to know i am not alone and it is related to the Fibro.

February 10, 2012 at 12:57 am
(42) Kathy says:

Oh my, I remember when I had my first really bad fibro flare…pain everywhere and cognitive issues so bad I couldn’t remember if I should shampoo or condition it first…or if I had washed it at all!
I used to have this cute pixie cut (wash and go, easy!), but when my hair started falling out it looked pretty bad. Now I just wear a cloth headband and call it good.
I do like the idea of getting a buzz cut and wearing a wig when I have to go out…but I know nice wigs are expensive…and with all my sweating problems, maybe not such a good idea. Still, it would be nice to look pretty once in a while…oh well.
It sure is a relief to know the hair thing isn’t my own special brand of crazy. I got enough of that going on already!! Thanks :-)

February 10, 2012 at 1:26 am
(43) Suzy McNeil says:

My husband often says that he is amazed that I still HAVE hair,as so much of it falls out or breaks off while I’m styling or just brushing it … I wasn’t aware that my \fibro played a part in that …

February 10, 2012 at 1:26 am
(44) Wendy says:

I concur…I always wore my hair short to make life easier not only with the discomfort of Fibromyalgia and Chronic Fatigue, but to lessen time. Now my husband likes for my hair to be long and long it is…I get distressed when I see my hair at the bottom of the shower, but like it was said, it does grow back. My scalp is tender in spots and definitely there are many days I have to let it air dry or just do a quick blow dry to take the dampness out.

February 10, 2012 at 2:00 am
(45) Susan says:

I hadn’t thought of many of these things in the lens of Fibromyalgia. So much is connected, here are continuations I’ve found out of what you’ve said.

Thinning hair, I was diagnosed with Fibromyalgia and vit D deficiency abut 15 months ago and the vit D supplimentation has made a world of difference in that. My hair had gotten so thin, as I understand it there is some sort of glitch in the folicular cycle associated with vit D deficiency.

The ability to raise your arms to do your hair, if they go somewhat numb it could be related to Thorasic Outlet Syndrome (TOS). This seems to be part of my issue and have Botox treatments coming soon to see if it helps much with it.

I didn’t realize that the excessive sweating was related to Fibromyalgia, I had guessed that they hyperhydrosis was related to the dysautonomia I also have. My new Internist prescribed me Dry Sol a few months ago amd it has made a world of difference for me. You apply it a few days in a row and then sporatically as needed. It is a liquid and should be kept away from the eyes and mouth. I put it on my forhead, into my hairline by about 3inches around my head, and then across my cheeks and nose. It has made a world of difference, I would have sweat running off my face and hats were never an option.

These things have made a world of difference for me, hope they help some.
Susan

February 10, 2012 at 2:20 am
(46) Anna says:

My hair hurts, and when I touch it the actual hair is hot. I’m going through a massive hair thinning at the moment, it worries me because my hair is so slow growing. I’m trying lethicin at the moment as it is meant hair growth.

February 10, 2012 at 3:49 am
(47) Robbie says:

Thank you for helping me understand I am not the only person dealing with hair that hurts!. I too, cut my hair because it was painful and falling out. It seemed there was going to be hair all thru the house and not on my head anymore. The only thing about the short hair was, now it moved around more than when it was long and I could no longer anchor it down.
I have since then figured out that spin pins are better than bobby pins and a claw clip on a bun is now my go to hair do. Soft cloth hair ties are better than rubberbamds And my hubby likes my hair being long again, which I think I am too old to wear hair long and down, but that is a whole other issue:-)

February 10, 2012 at 4:02 am
(48) Lavonne says:

I often have the problem of my arms being to tired and/or painful to wash and style my hair. I also have painful and/or itchy scalp. Thankfully, so far, no thinning.

February 10, 2012 at 4:16 am
(49) alison says:

I never conected my hair problems wre due to fibro ,but suddenly it all makes sense.no matter what i do to my hair every morning when i wake up it is like a birds nest.So i either have to wash it everyday…not possible or put conditioner and water to sort it out…not easy.I have very short .very thin hair..most times i just wear a hat !!!

February 10, 2012 at 6:33 am
(50) angela says:

Why can a stranger totally understand but someone who once claimed to love me not only doesn’t even try to understand but makes fun of me. I’m sorry my illness changed my life in ways we didn’t expect. When we started dating I had no way of knowing I was going to get this awful disease. This illness is all I can deal with – i cant deal with your hatred too. It would be better if you left me instead of treating me like this every day.

February 10, 2012 at 7:26 am
(51) Jeannette says:

I am so relieved to read some of the comments you made. Although I have suffered for years now with fibro, it is only now that I recognize the impact it has had on my hairstyles.

Blowdrying my hair and even washing it at times, fatigues me to no end. I’ve let it grow and fortunately can keep it in a ponytail or I don’t know what I would do.

I have seen that it has even affected how I dress at times. When I flare up, I most certainly take into account what clothes or shoes I wear…this condition has certainly changed many of our lives.

I’m grateful, as a health coach, that I have learned many ways to help, but there are times when I can do all I know and still have a day that is affected in some way by the fibro.

Thank you for sharing all of this it helps to know we are not alone.

February 10, 2012 at 9:34 am
(52) Eve says:

Wow! I’ve been complaining about head sweating and thinning hair for a very long time, but had no idea it was associated w/ my fibro and CFS.
I have Sjogren’s too and just heard that can cause hair loss also. Thanks for sharing. Sometimes just knowing ‘why’ makes me feel better.

February 10, 2012 at 11:39 am
(53) Noel says:

I have always had thin curly hair and have discovered that if I just use a wide tooth comb when I get out of the shower and do not towel dry it to much I end up with a nice curly hair. Back when I was working when I felt up to styling my hair I would actually lay on my bed and let my head hand down and blow dry it that way. Its easier on the arms and you get a little more volume =)

February 10, 2012 at 12:19 pm
(54) Bev says:

Yep – my hair/scalp hurts. Some days it`s on one side or the other – this morning it`s right on the crown. Very fine and thin now but thats also due to having thyroid issues. But even so holding my arms up long enough to dry it, is very hard. After about a minute my arms feel like lead weights and I get spasms in my shoulders. I actually dread ‘hair wash” days and try to only do it every third or forth day. If I`m not going out for a few days I just leave it alone!!

February 10, 2012 at 1:10 pm
(55) Linda says:

At one time, I lost big patches of hair. It was horrible. I went to a dermatologist and had steriod shots in my scalp w/no guarantee that it would grow back. It took about 2 yrs for it to grow back in fully!!

February 10, 2012 at 3:29 pm
(56) Ann says:

My solution………wigs. I have been wearing wigs for a couple of years now. not all of the time, most of the time. My hair falls out in huge patches when I am having a really bad flare or having stress. Thank goodness for wigs!!!! Most people think that is my real hair.

February 10, 2012 at 3:50 pm
(57) georgia says:

The fact that this is one of today’s subjects is a coincidence as I just placed an order online earlier today for a wig. In the past few years my hair has very much thinned out. It’s texture has become straw-like. This cannot be attributed to poor nutrition for I eat a very healthy diet & use many vitamin, mineral, enzyme, etc. supplements. It’s depressing but I’m hoping the wig will look natural, which will allow me to feel much better. I was impressed with the great selection of wigs online. The endless & unpleasant symptoms of Fibro seem so cruel.

February 10, 2012 at 3:54 pm
(58) Spookiesmom says:

I’ve had short hair for years. It’s only about 3 inches or so, all over. My job was semi out door, I sweat so much I just couldn’t deal with anything longer. Does it look nice on me? No. I get called Sir a lot. Big ear rings solve that. By the time my arms are tired from washing, I’m rinseing it. We do what we gotta do, right?

February 10, 2012 at 4:05 pm
(59) Kara says:

I’ve never been a fan of styling my hair so I usually just kept it short. However, it has been thinning a lot since my fibro diagnosis and I’ve just let it grow. It is down to my hips now and I keep it pulled back most days. Sometimes I have the energy to braid it but I know I’ll never be able to style it – just easier to have wash and go hair. And, I get lots of compliments on my beautiful long hair, which helps me feel good about myself :-)

February 10, 2012 at 4:26 pm
(60) Broncogrrl says:

I have my hair long. Most of the time I wear it in a loose bun or a loose pony tail. For the days that my hair hurts or won’t cooperate I throw on a bandana and put my hair in braids. No muss no fuss! Also helps for those really sunny days where there’s potential to get a sun burn on the top of your head. I have tried wearing a baseball cap instead of the bandana but it eventually makes my head hurt.

February 10, 2012 at 4:47 pm
(61) Betty Jarrell says:

I am so glad to hear that I am not alone with the hair loss. I do not want to go to a wig. I wonder if a perm would help to keep the hair loss from looking so bad.

February 10, 2012 at 5:20 pm
(62) Lil Cupcake says:

An esthetician with a head of fabulous hair gave me a great tip. Rogain for men (the generic brand) just apply in your roots after you get out of the shower and rub into scalp. Wash your hands after. Don’t use if you are trying to conceive. Its been over year and my hair stylist even noticed I have new hair growth. I didn’t tell her what I used.

February 10, 2012 at 5:24 pm
(63) Carol E McCormick says:

I have been asking my fibro specialist/expert, also a neuro, why my hair hurt so badly for years! Thank you for clearing this up. I too cannot stand the barettes or even pony tail holders and have to wrap my long hair (not cutting it!) in a soft bun. My hair is half way down my back and due to losing most of it years ago, I am a fanatic about not cutting it.

I also have CFIDS. Got that one day in 1989 before the fibro. It is difficult to put my arms over my head and especially to hang up clothes for some reason. That mid air level is the worst for me rather than totally reaching up the whole way.

Now I have Sjogrens. A new era of tiredness has arrived with it and I can rarely even go in the shower. Also peripheral neuropathy and am now being tested for rheumatoid arthritis.

Thanks for clearing up the hair issue!

Best wishes to all.

February 10, 2012 at 6:17 pm
(64) B says:

my hair is 2″ past my shoulders and the massive falling out so u gotta clean your hairbrush like 3 times by the time u r finished bothers me,
when I was 25 no problem, I was 31 now 50. I get my hair tangled up on that day they say to shampoo, then the next day u color THEN u can use conditioner, my hair is naturally frizzy, was curly, but got bed head were
the hair thats not in a scrunchyand bun it breaks off at like 2″ from my face and looks stupid or like I stuck my finger in a liight socket. the older u get the straigter and thinner it gets. And scince I was pregnant, my scense of smell never went back to normal, I hate the smell of hair products or even just hairspray.

February 10, 2012 at 6:38 pm
(65) Dianne says:

I hate even having a shower because I always feeel so fatigued by the time I’m finished and drying my hair after just about does me in. I have no energy left for any type of hair style. I usually throw it into a loose ponytail but a tight ponytail will give me pain almost immediately. I am at the point where I dread showering and blow-drying my hair. I usually do it now just before bedtime so I can go straight to bed because I have no energy left for anything else anyways. I never wash my hair or take a shower just before going out or any other activity because it just drains me too much!

February 10, 2012 at 6:43 pm
(66) Helen B says:

I recently have been diagnosed with Fibromyalgia, but I believe I’ve had it for years without knowing what the pain was from. I was so happy to read this information because I thought it was just me. I have a hard time doing anything with my hair including just daily brushing it. I often don’t bother because of the pain. Not only is it painful in my arms/shoulders, elbows, and hands, it is extremely painful to my scalp. I never have been a wimp about getting out snarls, but a tiny little tangle in my (curly) hair causes excruciating pain in my scalp. It is so bad that I often don’t bother to brush my hair. Often I just throw it up in a twist with a barrette (it takes less time than brushing) and hope for the best. Thank you for sharing your story and letting me vent mine…

February 10, 2012 at 6:43 pm
(67) Donna says:

My sister was asking me about FM and about how we feel pain more than others. I was telling her I can feel my hair fall out. It feels like a little ping and then I get itchy. Right at the spot will be a loose hair.

February 10, 2012 at 6:52 pm
(68) Al says:

me: male, 47 years old; full Fibro onset 14 years ago. After trying to have long “rock-n-roll” hair for most of my life, I cut it all off [& bleached it & stuff]. My hair is naturally thinning, as happens to men in my family; this could be being accelerated by the Fibro, but whatever…i now just let it grow, and it kind of self-limits the length. _However_, shaving has always been a pain, ESP. w/Fibro., so now i’m growing out a thick, full beard, and it’s been fun! Two years & counting. I was Santa one year. I get ZZ Top comments often, and some “strange” looks all the time. Of course, I also wear “mis-matched” colored Crocs all the time as well.

Have fun w/the little “freedoms” Fibro allows…[i no longer care if i look silly or weird].

Cheers All!

Keep the Faith!

–al

February 10, 2012 at 7:02 pm
(69) Ivette says:

Although every once in a while I have lost a lot of hair, I didn’t worry so much until last year when it seemed I would probably be bald very soon. I talked to my hairstylist an he suggested to cut it very short. I agreed and its been great. All my hair grew back and luckly don’t have to blowdry it at all. I also have very brittle and extremely dry fingernails. I was so worried that I went to my dermathologist. He suggested to stop using any nail laquer, acetone and to use rubber gloves when using any detergent. Also suggested applying vaseline to each fingenail and then polishing them. My fingernails are much better, I cut them very short and look more healthy. Besides, I am not spending money on products for my manicures (just looking it from a positive perspective)LOL!

February 10, 2012 at 8:12 pm
(70) Shelley says:

In regard to hairstyles for the past 10 years, my
Motto has been strictly “Wash ‘n’ Wear”……….my arms
DO get too tired holding a blow dryer and, since I’m
too hot when I get out of the shower anyway, the
blow dryer just makes me hotter, I sweat more and
so my hair never gets dry. If I just put it up in a soft
Scunci after gently brushing it, and leaving it that
way until it’s dry, it looks kinda cute (wavy and height
at the crown of my head. AND, I don’t damage my
hair from all that heat.

Thanks again, Adrienne, for bringing up these “little”"
topics (they ALL add up); once again, I thought it was just
just ME.

Hugs to You and ALL of my Sisters/Fellows! You’re
all Heroes to me.

:o )

February 10, 2012 at 8:27 pm
(71) Cindy says:

I use to love my hear and got many compliments on it. Now I hate it. I keep it short and have even thought about cutting it shorter for all the above reasons.

February 10, 2012 at 11:02 pm
(72) Em says:

Hello ladies/gents. Its so nice that we can share things. We all have in common.I remember times when I took it for granted that I’d always be able to wash + style my hair – how wrong was I?
My hairs so thick I don’t even brush it every day as its too painful and tiring! At least we don’t give up though, we still try all those things we’ve read are good for us.:-) Gentle Fibrohugs + look after yourselves xx

February 10, 2012 at 11:12 pm
(73) Connie says:

I am so sad as I read all of your posts! It is also comforting to know that we can share our horific problems. I, too, am like you who have trouble with having enough energy to take a shower, dry my hair, put it in hot rollers and put on my makeup. I usually have to sit down several times to catch my breath and when I’m finally ready to go somewhere, I’m too exhausted! I don’t wash it as often as I should. I have considered shaving my head but I haven’t had the nerve yet! I still work so I have to get through it each day. I usually sleep all of Saturday to try to control my exhaustion. Thank you for your candid responses. We are more alike than we realize.

February 10, 2012 at 11:23 pm
(74) Karen says:

I use a very small traveling hair dryer . It is much lighter than a standard hair dryer.Mostly I just dry my bangs and clip up the rest of my hair because I can’t hold up my arms either.
I’ll take a nice bath the day before I am going out. Trying to shower and get dressed before going out just puts me back on the
couch.

February 11, 2012 at 12:15 am
(75) Starr says:

My hair and nails stopped growing at all. I have no hair on legs or arms anymore, but someone suggested taking Prenatal Vitamins so went to my doc and asked for a prescription and she gave them to me, They are cheaper through my drug insurance than anythng over the counter AND now my hair and nails are growing. I find wearing rubber clubs when cleaning is a MUST for the water truly wears down the fingernails. I also keep fingernail polish on them. My hair grows slowly but is still very thin..my beauticians says your hair is so fine but you sure have a lot of it. Since I am starting to send my last grandchild I raised off to college in August I am trying to start re-doing myself. I raised my sister, my daughter and my two grandchildren with NO HELP from anyone. Jess is in college and Dallas graduates in May and off to college in August so we have been blessed, but I am so tired I am ready for a lot of quiet time and unlike others that tease me about the empty nest syndrome I feel I am quite ready for the peace and quiet and maybe even a date..llol It has been 12 years since my husband died so it should be interesting. Oh well, just going on and on, but my point was to try prescribed neonatal vitamins for hair and nail growth.
Gentle hugs to all, Starr

February 11, 2012 at 12:15 am
(76) Starr says:

My hair and nails stopped growing at all. I have no hair on legs or arms anymore, but someone suggested taking Prenatal Vitamins so went to my doc and asked for a prescription and she gave them to me, They are cheaper through my drug insurance than anythng over the counter AND now my hair and nails are growing. I find wearing rubber clubs when cleaning is a MUST for the water truly wears down the fingernails. I also keep fingernail polish on them. My hair grows slowly but is still very thin..my beauticians says your hair is so fine but you sure have a lot of it. Since I am starting to send my last grandchild I raised off to college in August I am trying to start re-doing myself. I raised my sister, my daughter and my two grandchildren with NO HELP from anyone. Jess is in college and Dallas graduates in May and off to college in August so we have been blessed, but I am so tired I am ready for a lot of quiet time and unlike others that tease me about the empty nest syndrome I feel I am quite ready for the peace and quiet and maybe even a date..llol It has been 12 years since my husband died so it should be interesting. Oh well, just going on and on, but my point was to try prescribed neonatal vitamins for hair and nail growth.
Gentle hugs to all, Starr

February 11, 2012 at 8:54 am
(77) gerry says:

I make you right becase my head hurts most of the time and to top it up, the scalp is so tender to the touch that I am afraid to comb it. This promble started years ago without any explanation from my consultan. At first I thought it would pass but to date I still suffer with it therefore I have my hair cut really short to and it helps. I also have to put on hat indoors as well as out doors because I notice that with the cold weather, I get a flair up therefore I take precausion.

February 11, 2012 at 10:11 am
(78) Faye says:

After I wash my hair by leaning over the bathtub, my shoulders just burn while I’m trying to blow dry it and I have to keep changing hands. I can’t find a light weight blow drying and they seem extremely heavy. A lot of times I just wash it once a week and use dry shampoo in between because it’s so much of an effort to deal with and I like long hair.

February 11, 2012 at 10:19 am
(79) msvee says:

I wear my hair short cropped,and I cant put hair lotion in daily because it causes too much pain. Hair/shapeups are far between. When my barber combs it out, I feel like my scalp could peel off. I get headaches afterwards. Same goes for underarms,when I shave. My hair can just come out by me pulling on it. This fibro is a pain.

February 11, 2012 at 11:30 am
(80) Brandy Fair says:

I was so happy to read this…. Mine is to the point that every time i get out of the shower after washing my hair…my husband is like OMG baby, why are U losing so muh hair all the time? at this rate ur not gonna have any left before too long! i had no idea fibro caused this! to be honest i was diagnosed 5 yrs ago and i have started havin new symptoms that i never knew before…like body jerking…saw my rheumy this week he says thats definietely the fibro…would luv to hear a diussion on hear sometime reguarding that! God Bless all my fellow Fibro Fibro Fighters

February 11, 2012 at 12:01 pm
(81) Jody says:

I appreciate knowing that my devastating hair loss is not particular to me, though I grieve for all of us who are affected by its impact. There are two products that have helped me mask my increasingly large bald patches. Both products are offered by a company called Spencer Forrest : http://www.spencerforrest.com . Couvre is a colored cream that you sponge (or use a soft make-up brush) to cover spots on your bald or wispy scalp. Fullmore is a colored spray that contains filaments to boost the thickness of your hair. I have used both items for over a decade (my constant use of steroids ensure that my hair never re-grows enough to completely cover my head), and they make it possible for me to go out in public without feeling too self-conscious. They are easy to apply and don’t require very much time or effort lifting arms or trying to be artistic. I’ve had my diagnosis for sixteen years and I’m still searching for a hair cut that makes me feel pretty, but in the meantime these products at least help me feel somewhat comfortable looking in a mirror.

February 11, 2012 at 2:40 pm
(82) nancyjean says:

I have naturally very fine thin hair. It’s always been a problem to style, but after 10 years of Fibro, I gave up. I keep it medium length and trimmed every 6 weeks, but now I have a balding spot and a new gray wirey spot plus 3 cowlicks (age 58). My solution was to purchase old small hats to wear over my bald spots and cowlicks. I taught myself how to clean them and re-trim them. I wear them most of the time. I use combs to keep the hats on – bobby pins and clips are too painful. Also, my poor nails have really rough ridges on them. Over the years, my makeup has diminished and I only dry the ends of my hair now. Thanks for adding this subject to our ever growing list of symptoms!

February 11, 2012 at 2:56 pm
(83) seegekatz says:

this explains a lot!! it never ocurred to me that my long thick hair making my head and shoulders hurt , being unable to tolerate barrettes, clips, etc , and even giving up wearing my beloved baseball cap could be related to fibro! and someone mentioned not being able to tolerate hot water – add to the list: a shower with normal water pressure, any type of massage, and hugs :(

February 11, 2012 at 3:00 pm
(84) illuminary says:

I like knowing I’m not the only one who thinks hair hurts. I’ve had long hair for years. After a too-short cut when I was younger, I vowed not to cut my hair short again. My hair is gorgeous, I am grateful for it even when some of it falls out and even when I’m having a bad hair day, which is often. I still love my hair. Because of the arm fatigue I rarely style it and try to appreciate it anyway.

The tricks I’ve learned to keep my long hair manageable with fibro are:

-let it air dry as much as possible before using a hot hair dryer to roll the ends over a round brush to give it an easy completed look. The dryer can also help regulate your temperature, you can use hot when you feel cold or use a cool setting/cold shot button when you’re over-heating.
-Tiny claw clips (even the ones the size of a finger tip) will keep your hair in a bun without pushing into your head. Just use 4 spaced evenly around the bun.
-Dry shampoo is a must have so I can go several days between showers. I use a powered one that doesn’t smell, put a little on my scalp and briefly brush through to ends.
-a paddle brush with round tips goes through my hair so much easier than anything else. I get bad tangles on the ends because of laying around and the paddle doesn’t hurt as bad as other brushes.
-elastic head scarfs that are really stretched out hide my hair and if I only wear them for a few hours they aren’t too irritating. They are light weight for summer, and they give me a cool, artistic vibe that I like.

Fibro is hard enough to deal with, so I do my best to love the things my body does RIGHT each day and try forgive it for the things that don’t feel good.

February 11, 2012 at 7:43 pm
(85) Debora says:

I have thining and limp hair. I strated on hair vitimins two months ago but no real change has happen. Styling my hair is a problem too since I have to rest often. I now sweat in my head just puting on my clothes and that just destroy and real hair style. and yes my hair hurts just touching it sometimes. It takes a lot of energy to comb work with my hair so I am always looking for easy way to handle it and still feel beautiful. I can’t do wigs or hats for any lenght of time-too hot. I have done the short cut for a while.

February 11, 2012 at 10:02 pm
(86) Charlene says:

I agree with Ann; wigs are the way to go! When I was first diagnosed in 99 my hair fell out in the top! I felt funny about having to get a wig but now they are like any other accessories I wear! I have long ones and short ones. I wear what suits my mood for the day and they are easy and uplifting when having a bad flre day!!!

February 12, 2012 at 2:43 am
(87) lyn swan says:

what a relief to hear other people suffer sore head and hair i thought i was going crazy as its not something you tell people ,because unless you experience this you would not understand ,im losing my hair but im lucky because i have plenty .my daughter is a hair dresser who is starting to suffer the pain in her shoulder blades and arms ,she also has an auto immune disease as does her sister i often wonder if there is some link to fibro . back to the hair it,s a major operation to wash and style my hair apart from the pain i am exhausted for the rest of the day .best wishes to my fibro friends out there ,be kind to yourself

February 12, 2012 at 4:45 pm
(88) zen io says:

There is only one good natural remedy to start the hair growth process.
Read more here:
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February 12, 2012 at 5:38 pm
(89) deb says:

No offense to any of you, but I had to quit reading about half way thru cuz my arm is getting tired of holding up my head. Before I had to quit working, strangers would remark on the pretty color of my hair, a mix of gold and silver and blonde, totally natural. After I got sick, I let it grow long because is was easier and nobody was looking at me anyway.
Awhile before xmas I was watching Chaz Dean of Wen hair products on QVC and I said to my husband, All I have left that’s worth a darn is my hair. It would be so pretty if I used that stuff. He insisted that I get it, and I gave some away for gifts. The first time I used it I was really happy with how my hair looked. Every time I use it I love the results.
However-I’d forgotten how infrequent actual full on showers have become, because just stepping into the tub is sometimes more than I can do. Oh well. At least I probably have a lifetime supply of it.
Since I didn’t read all the comments I don’t know if anyone else brought this up, but I used to use a dry shampoo I got on HSN, and it was a lifesaver. Since then, a high end retail hair care maker has started selling it. Of course the name escapes me, but it’s out there, and it really does make those stretches between proper cleanings ;)
easier to take. Carry on, fibrofriends.

February 12, 2012 at 6:26 pm
(90) demonica says:

never mind having bad hair days, my hair keeps falling out loads. thinning very badly these days.

February 12, 2012 at 7:46 pm
(91) Peggy says:

Wow..I thought this was only me!!! I am reading your post and in a strange way it makes me feel a little more sane…when I have mentioned in the past to others that do not have fibro and mention how that it hurts to even wash my hair or shave my legs…they just kind of stare at ya. or make little statements that hurt more than help!….fibro is a terrible disease!!!.

I work at a hospital and I see many patients coming in to register for their surgeries that are on disability for their fibro….I am trying sooo hard no to stop working…but I have absolutley NO life…go weeks not making it to the store to get groceries…not good. I wish there was a cure…it takes your life away! : (

February 13, 2012 at 9:09 am
(92) rolive says:

I have had extreme hair loss for the last 5 years and had a little the last 6 before that due to Fibro. I do not take medication so that is NOT the cause!!! I think I would be a good study for Fibro

February 13, 2012 at 10:25 am
(93) d R.N. says:

For all of us with hair loss; I am one as well. You may want to get your serum vitamin D level checked. Vitamin D deficiency is very common among fibromyalgia patients, and Vitamin D insufficiency will cause hair loss, muscle pain, fatigue, anxiety and a whole host of problems that we suffer from.

My rheumatologist put me on a script vitamin D3 pill weekly, because my serum vitamin D level was so low. I feel much better when I take it, but unfortunately the relief doesn’t last forever. May explain why I always feel better in the summer months than the winter. :)

February 13, 2012 at 12:42 pm
(94) Kaye says:

I am so relieved that it has been mentioned….my hair hurts too! Never told anyone because it sounds so ridiculous!
I have short hair which helps enormously, I’ve tried growing it but as others have said, it hurts to keep my arms up while drying/styling it. It also hurt when it moved, this could be brushing, hands through my hair or even the wind.
I’m sticking with the short style now, its quick to dry, no brushes involved & it doesn’t move much!

February 13, 2012 at 3:36 pm
(95) Laura says:

Hi All. My hair problems started in my 20s. Finally I cut it very short and dyed it red. It suits me better than my long hair so I am fortunate in that respect. Can anyone tell me where i can buy a wig that is not soooo expensive but actually looks natural? I would like to wear a wig once in a while to change it up. After I cut my hair is when I started getting modeling jobs offered to me on the street. Don’t be afraid of short hair, although some women look better with long!

February 13, 2012 at 3:36 pm
(96) Laura says:

Hi All. My hair problems started in my 20s. Finally I cut it very short and dyed it red. It suits me better than my long hair so I am fortunate in that respect. Can anyone tell me where i can buy a wig that is not soooo expensive but actually looks natural? I would like to wear a wig once in a while to change it up. After I cut my hair is when I started getting modeling jobs offered to me on the street. Don’t be afraid of short hair, although some women look better with long!

February 13, 2012 at 3:38 pm
(97) Bekah says:

Each year my Fibro has become more difficult to deal with and exasperated by other symptoms, along with that I saw a rapid thinning from a luxurious thick mane to a limp frazzled mop.
Add in medications and hormone loss at my age I’ve easily lost close to 15-20% of the fullness.
My hair is long (I did the shorthair look many times but I’m also heavy and it never flatters a round face) and it certainly is difficult to style when your arms are fatigued. What I hate even more is that if I manage to get it done it usually results in damage to the ends because my hair is brittle now (do not use products, color, perms)

February 13, 2012 at 5:11 pm
(98) mandy says:

i have had many problems with losing my hair, to washing to now i cant even brush it my head hurts when i run a brush or comb thru it, i d ont know if fibro is the cause for this as i do have fibromyalgia but it is painful trying to brush my hair and that use to be the number one thing that would calm me down and relax me by someone touching my head…not anymore :(

February 14, 2012 at 12:55 am
(99) Erica says:

Everything I have read sounds just like what I have experienced. I have been having fibro for almost 6 years now it is so painful, it takes over your life. The flareups are the most horrible pain I have ever endured. I have lost so much hair it is unbelievable, wet or dry. I hate to wash my hair because it is so long & the tub is full of hair, but really the main reason besides seeing all the hair that I am loosing is that I have to blow dry it and it take forever & I cant stand up that long plus it hurt my arms to brush myhair & w/one arm & hold the blow dryer w/the other arm. I have cut my hair also but of course its grown back, my beautician even commented on my hair loss. It’s so depressing and painful and has just taken my life over. I don’t hardly go any where’s anymore bc it is such a hassle to do my hair!!! & Shortly I was DX’d w/fibro I was weadk & fell down some steps onto a concrete slab & FX’d my ankle & ruptured 4 disc’s in my back, so now I also have

arthritis and osteoarthitis Then the depression of the firbro and staying in bed alot b/c of the constafnt pain

February 14, 2012 at 6:16 pm
(100) Monique says:

Before my Fibromyalgia symptoms reached the point that they are now, I still kept my hair in an easy to manage “bob”. As my symptoms have reached what I hope are their peek, I have had more then 75% of hair loss, along with the true ability to even wash it in the shower. To keep me from getting upset, which happens to cause flair ups, I went to the hair dressers and had her cut my hair keeping it long enough that I know it is there, but short enough that when I’m getting ready for the day all I have to do is run my fingers threw it and go. It was hard at first to look in the mirror and see my hair gone, but know I love it, and it is one less pain I have to deal with during the day which is always great.

February 15, 2012 at 1:17 pm
(101) Mia says:

I went thru a HORRIBLE flare(s) the past year and thought I was going to go bald! At least it seemed that way when I was constantly cleaning the hair from the shower floor. But luckily I have thick hair and it just got a nice thinning.
Styling my hair became a problem years ago because of reaching for long periods of time. I thought it was all related to my cervical disc issues but now I know it’s a bad combination of both that, fibro and cfs. The fatigue my arms can experience is scary.
Now I wear my hair long with some razor cutting to add dimension. I also have hi and low lighting added to add to the fullness. And it’s common for me to put my hair up or down a dozen times a day. First I’ll want it off my face then it hurts too much so I take it down. But with the way my stylist cuts it I can us plastic clips that hold smaller sections back. They are light clips and dont add weight.

February 15, 2012 at 8:07 pm
(102) Mercedes says:

For me the biggest problem is the sensitivity to pain in the scalp.
I hate going to the beauty parlor and they pull your hair to comb.
I remember that before the fms I went 2 times a week at the hairdresser…….now one a year….

February 16, 2012 at 9:21 am
(103) travelngrammy says:

I can totally relate to the Pain, Burning, Itching” feeling when you try to pull your hair up. I am older with CFS/ME and fibro, I keep my hair which is thick styled shoulder length. I only wash it ever other day and after the shower frequently take a rest break with a dry towel on the pillow. This starts the drying process. Next I do something I learned to do in the days before hand held dryers when we hung upside down over the air conditioner units outside. No that’s not what I do now LOL I do sit in a chair , lean my head over and blow dry it forward. This is easier on the shoulders and adds body. You can use a brush a little as it gets dry. When I flip my hair back, it takes only a little bit of styling. Hope this helps someone.. I’m in my 10th year of this illness so I’ve had time to work out a few tricks.

February 16, 2012 at 3:36 pm
(104) Gillian says:

When I have to spend a lot of time in bed my hair gets so oily and stringy.

February 17, 2012 at 4:27 am
(105) Natsafibro says:

To Lashelle whose daughter has the bad eczema. Use Dove soap (regular white). Put on Hydrocortiizone and Eucerin dry skin creme after every bath. I am no doctor but this is what worked for my family. (We use generic brands also.) My mother has suffered from this all her life but this helps very signifigantly. Also the fewer scented products used the better. Try to get things that just have no scent added instead of hypo-allergenic. Anyway I hope you get this because I know that itch can drive a person insane. Also after it heals some I use a bit of baking soda in the bath it is soothing.

February 17, 2012 at 12:33 pm
(106) Leslie says:

I didn’t have time to read all the replies (my eyes can take only so much “steady” reading on a computer), but yes, my hair has been an issue, too. I’ve worn it various lengths through my life – pixie cuts from my sister when I was little – ick! – to middle-of-the-back in high school. Got it cut about halfway off sophomore year of college and then went about three inches all over senior year. Back and forth since then (growing out is always a hassle), but in the last several years, out of the 20 I’ve had fibro, I find that I can hardly stand to have it touch my neck or ears or face. It’s as short now as it has ever been, and while I miss being able to do the ponytail thing, all I have to do now is push it around a little with my hands while it’s wet and maybe give it a slight spritz of Pantene *unscented* hairspray (only one I’ve ever found). I wouldn’t have the energy, or as many that I did get read pointed out, the arm strength to deal with brushing, curling, “fixing” long hair.

Weird thing…it’s always been a little wavy, but in the past few years it has gotten absolutely curly — across the back and sides. There’s a strip across the top that barely bends at all, another reason to keep it this short.

Oh, and while it doesn’t “hurt” in general, if the side front of my hair gets to a certain length — and I’m not talking anywhere near down to my eyebrows — it give me killer headaches and eye pain. Can’t explain it; it’s not in or even all that near my eyes, but it hits a certain length, and that’s it.

February 17, 2012 at 10:19 pm
(107) Gayle says:

A question: Do others suffer from lumps especially found around top of legs and thighs but others are appearing near ribs etc. They tend to be sensitive also with touch and can turn painful?

February 18, 2012 at 12:01 am
(108) Donna says:

First time poster here. Wow. I thought it was just me. It hurts to lift my arms in the shower to shampoo my hair. The texture of my hair has changed, from naturally curly to thin and ” wavy,” as my hairstylist said this week.

I can’t believe so many people feel as I do. I have felt so alone.

February 19, 2012 at 6:36 pm
(109) Marea says:

I have suffered with fibromyalgia for more than 11 years (officially).

It got so bad that the only way I could get my hair washed was at the hairdressers and that meant putting up with hurting shoulders and neck, but it was worth it. I don’t know whether it had anything to do with my hair turning white so early, interesting thought!

To day and most days now I feel so much better. Have eliminated certain things from my diet, I try to be sensible in what I do.

I have a page on facebook if anyone is interested, symptoms of fibromyalgia where you will find I have links to this very site. Thanks for your information,
Marea

February 19, 2012 at 8:14 pm
(110) gale wilcox says:

I have fibro. hair has always been thin fine and falling out in handfullss. I also have hemachromotosis which has the same symptoms of fibro. which makes hair fall out. all who have fibro should be tested for the homozygeous gene which causes hemachromotosis. I beleive it’s probabaly most peoples reasons for fibro. I know it’s mine. Look it up.

February 24, 2012 at 3:09 am
(111) Pimp says:

I’m 34 years old married to killer sweet wife and I have 3 kids. Ive had fibro now for over 16 plus years and it’s just getting worst. I had long hair down to my ass , took me 12 years to grow it and man it was hard to wash it and brush it. Just to hold my arms up for a min at a time would be too painful, so that when I my wife to shave it off. Donate it to the Locks of loves cancer. It’s was the best hair you have ever seen. Trust me. But now I’m loving the short hair and it only takes 2 Mins to wash and condition. As for the pain I scored a 17/18 tender points and I want to die. I’m sick of the pain. I can’t walk. I’m no use to my family no more. This pain will never go away. I’ve tried everything and see everyone and spent lots of $$$$. Nothing works. I feel death coming close cause I truely lost hope. Sorry

February 24, 2012 at 6:54 pm
(112) Lisa Ann says:

Can coloring your hair cause a fibro flare? I have always gone to a salon to have highlights but decided this year to do it myself to save some money. I have not had any debilitating problems for almost 3 years but I am having a horrible time right now. The only thing that I can blame is using the new hair color. Is this possible?

February 24, 2012 at 6:57 pm
(113) Lisa Ann says:

Pimp- have you read Armand’s book Everything Your Dr. Won’t Tell You about Fibromyalgia? He recommends a Gui protocol that I have been on for years and I cannot begin to tell you the difference it has made in my pain…

February 24, 2012 at 7:00 pm
(114) Lisa Ann says:

Gayle- yes on your question about the lumps on thighs. I wish someone else could make note of my thighs and then tell me again that fibro is all in my head…

March 3, 2012 at 5:31 pm
(115) Benia says:

I have the wisps around my face, especially near the top corners. I call it”baby orangutan”. I keep my hair very simple and low key. It’s all one length, trimmed by my local barber every six months or so. I grow it long to my waist, then have her cut a foot off to donate to Locks of Love. Then I have shoulder length hair again. I don’t dye, curl, or do much with my hair most days. Just a side part and a couple baby jaw clips to keep it out of my face, a big jaw clip for putting it up, ord the occasional bun, braid, or tails.

July 7, 2012 at 7:54 am
(116) Deb says:

I am still undiagnosed but going later this morning to have my hair cut because I just can’t manage it any more. It may sound stupid to some people, but I am heart broken that whatever my “mystery symptoms” (as I now call them) are, that I have to cut my hair over them. It’s bad enough that I feel horrible all the time and that I have to deal with all of the symptoms that none of the doctor’s can explain or that my friends and family think I have lost my mind because I look fine to them but keep complaining about how horrible I feel. Thank God I have a primary care doctor who gets it and is willing to keep running tests and help me figure out what is going on. In the mean time I am doing symptom management and if that means I have to cut my hair to cope, than goodbye hair……

August 7, 2012 at 8:59 pm
(117) Lonni says:

Yes, Laura! (Comment 21) I have the nail cycle you spoke of. I love my nails when they go through periods where they finally feel a little stronger, and they will grow out a little–but it never lasts long. They become brittle and break one after the other. And repeat. I have lost about half of my hair over the past couple of years and now have patches where i must do a comb-over thing to keep my scalp from showing through. My hair doesn’t want to lay right at the crown anymore. There is hair that doesn’t seem to belong on with side and doesn’t lay well in any direction. I have developed a cowlick sort of thing, at over 40! I’ve never had that before; it’s truly odd.

I am seriously wondering if I have fibromyalgia or CFS, or both. I have occipital neuralgia as a result of spondylosis of the cervical spine from a traumatic childhood accident. I suffered a seizure due to brain trauma and nearly broke my neck. The occipital nerve root in the back of my neck is now being pinched. This can cause extreme scalp tenderness. Mine is limited to one side. The issues with my degenerating neck vertebrae and discs are also limited to one side, but the pain in the shoulders is now continuous and is especially bad when I try to to anything above my head. This has just been in the past couple of years, and I have become tired all the time. My thyroid was checked and is normal. I am being checked for MS soon because of my various neurological issues, but many of my symptoms seen autoimmune-related (as is MS, of course.) It does make me wonder.

October 21, 2012 at 3:42 pm
(118) suzy says:

hi, everyone i cant believe what I am reading I thought my head was actually going!! I attended doc months ago with very sore neck/back she said im stressed need massage…. A massage for me has to b most horrific ordeal the pain unbearable even asking them go easy, also goin to hairdresser for ex my mum wud fall asleep not me agony cant cope this has been goin on for while, arms sore while doin hair, head/ scalp aching….. for long enough there I was putting it down to needin hair washed but just getting worse the feeling of tight hair bauble.

I went doc other wk had enough pain bac/neck/arms/head cant cope. she reckoned there could be something wrong with nerve endings, ive broke 2 ankles in past few years waiting on dexa scan which is next month…..
im low vit d and calicum,

this past wk im laid up with terrible cramps diahorrea soo exhausted….

also waiting on appointment id endimetriosis lump removed last yr , ive pelvic pain.

all in all after reading all ur posts i feel i cud have fibro, im 33 have 2 kids age 4 and 5 its not easy, working keepin family being in sooo much pain im at my wits end.

sorry for rambling, thanks

November 9, 2012 at 9:20 pm
(119) jackie says:

Wow for the longest time I have tried to figure out why my hair has been getting thiner and thiner especially on the top now it makes since thanks for this post…. but unfortunately mine is not growing back :(

November 22, 2012 at 1:22 am
(120) Lorri says:

I am so glad to hear that I am not the only one who has problems styling their hair! When I had cancer, I shaved my head bald as opposed to watching it all fall out. After my second round with cancer, I have kept it short. I can not keep my arms over my head to use a curling iron-never really could even as a child-and brushing or combing it hurts so bad. I just keep it short enough to tousle it with water so that it doesn’t look like bed head, and go. I have tried to wear it long again, but it just falls out, and looks horrible! I love my short hair styles-although many others do not. Personally, having hair is a royal pain in the everywhere for me!

December 15, 2012 at 6:17 am
(121) women over 50 fashions says:

An outstanding share! I’ve just forwarded this onto a colleague who had been conducting a little research on this. And he actually ordered me lunch simply because I discovered it for him… lol. So allow me to reword this…. Thanks for the meal!! But yeah, thanks for spending time to discuss this subject here on your web page.

February 1, 2013 at 11:44 pm
(122) malihe says:

Most of my life i have had long hair which was braided . I cut it short once in a while , but now i cant stand the styling gel or even liquid , because it
gets dry , then it flakes and goes into my eyes , which gives me allergy.
You were talking about sweating in the summer. How about in the winter. Also do you freeze in the summer because of AC . That os one of my biggest problems. I

February 21, 2013 at 11:16 pm
(123) in harley says:

Hey there! This post could not be written any better!

Reading through this post reminds me of my old room mate!

He always kept chatting about this. I will forward this article to him.
Fairly certain he will have a good read. Thanks for sharing!

May 20, 2013 at 4:46 pm
(124) JlynnNC says:

If my hair isn’t washed often the pain is too much for everything, yet showering or washing it in a sink is also so difficult. I keep going shorter, but still the problem exists. It is supportive to learn of others dealing with this! Thanks to all!!

May 25, 2013 at 1:53 am
(125) Brioche says:

I don’t have a problem with thinning hair, in fact my hair is too thick. This makes going to the hair-dresser awful as it takes them so long to cut and dry it. A simple cut for me is 2+hours all up. I haven’t been in 2 and a half years because the basins hurt do much. Last time I honestly thought my neck was going to break and I’d have to go to hospital.

As for arm fatigue, after being in a pain management program and building up my tolerances very gradually with exercises and weights, I’m now able to dry my hair with no problem. This has also been helped by cutting it shoulder-length myself (after two years without visiting the hair-dresser it was down to my bum). What a massive relief short hair is! The weight of my long hair was adding unnecessary stress to my neck. I urge the woman at the top of the thread who is worried about wearing a shorter style while being fuller-figured to go for it – you’ll feel so much happier! Long hair will draw a vertical line and highlight the width of your figure by contrast (I’m far from skinny myself). A shoulder-length style with as much body as you can get into it with a cut (so as to keep styling to a minimum) will balance out your proportions.

My problem now is with general fatigue – standing in the shower followed by standing in front of the bathroom mirror etc. is too much for me one after the other. I have to have a rest in between and after before going out which makes getting out of the house in the mornings very difficult. I rarely wear make-up or even get to curling my lashes (which takes a very long time as they point DOWN) because of the fatigue. I’m not sure if it is related to fibromyalgia (likely not) but my hair won’t curl either.

May 28, 2013 at 3:23 am
(126) Sign in with Facebook says:

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June 18, 2013 at 10:44 am
(127) visit website says:

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November 14, 2013 at 12:20 am
(128) debbie says:

I notice that my hair is thinning and since i keep it short…I dont mind the shortness but the thinning is a problem… I too cannot bother to keep my
arms up to do hair and i have about dozen hats but due to headaches i can’t leave them on my head long…

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