loss of hair related to fibromyalgia?

Discussion in 'Fibromyalgia Main Forum' started by sarasuzy, Nov 20, 2002.

  1. sarasuzy

    sarasuzy New Member

    I have been losing my hair since I have been diagnosed with Fibromyalgia 3 years ago. Just recently the past year and a half I have been losing a significant amount of hair, to the point that there are spots where you can see my scalp very clearly. This is very unusual for me for the fact that I have always had a thick head of hair. If anyone else has experienced this please let me know. I don't want to think that I am ust going crazy and it is all stress related. I am not really that stressed. I went to my doctor a couple of days ago. He did some blood tests for thyroid, electolytes, blood count and a lead level. All of these test came back normal. The only thing that was low was my mean platlet level (mpv) and my alkaline phosphatase (alk phos). Maybe I'm just crazy.
    Sincerely,
    Sarah

    [This Message was Edited on 11/21/2002]
  2. sarasuzy

    sarasuzy New Member

    I have been losing my hair since I have been diagnosed with Fibromyalgia 3 years ago. Just recently the past year and a half I have been losing a significant amount of hair, to the point that there are spots where you can see my scalp very clearly. This is very unusual for me for the fact that I have always had a thick head of hair. If anyone else has experienced this please let me know. I don't want to think that I am ust going crazy and it is all stress related. I am not really that stressed. I went to my doctor a couple of days ago. He did some blood tests for thyroid, electolytes, blood count and a lead level. All of these test came back normal. The only thing that was low was my mean platlet level (mpv) and my alkaline phosphatase (alk phos). Maybe I'm just crazy.
    Sincerely,
    Sarah

    [This Message was Edited on 11/21/2002]
  3. WorldFalls

    WorldFalls New Member

    I noticed about two years ago that I was loosing hair by the hairbrush fulls. It was terrible. The tub was always stopped up because gobs of hair had fallen down the drain. I, too, have always had really thick hair, so this was a huge shock. I was taking accuntane at the time. Accutane is a drug that helps clear up severe acne. It worked wonders for me! :) But I discovered from an accutane message board that hair loss was a potential side effect! I had no clue until I saw that. Sure enough, after I completed my accutane therapy, the hair stopped falling out.

    Are you taking any medications? If so, perhaps you could look into their side effects. Most drugs have a list of "common side effects" and a list of "less common side effects." We tend to hear a lot about the common side effects of drugs but not so much about the less common ones! Perhaps your hair loss is a "less common" side effect of a drug you are taking. Just an idea. I hope that helps some. Good luck to you!

    Elayna
  4. Shirl

    Shirl New Member

    Hi Sara, welcome to the board.

    I don't have a problem with losing hair, I have had Fibro for 20 years now.

    My hair is thick, and almost to my waist, in fact I don't even have much grey in it. I am old enough to have the gray!

    You might want to research the meds you are taking, or it could be a vitamin deficiency. Both can cause hair loss.

    I hope you fine out what it causing it. Have you mentioned this to your doctor? Or if you are taking meds, you could ask your pharmacist, they are wonderful for telling you what can cause problems with meds as well as deficiencies.

    I am not positive, but I think a thyroid problem can cause hair loss too.

    Again, welcome to the board, and I hope you find out what your problem is soon.


    Shalom, Shirl
  5. sheri

    sheri New Member

    Hello sarasuzy'

    I personally do not know of any hair loss related to fibro.
    As a Cosmetologist (prior to disability due to fibro and other conditions) this condition is called Alopecia Areata.
    I also taught Cosmetology for 8 years, This condition can be caused by several things. Stress for one, but most likely a systemic disorder. Have you had your thyroid checked? Thinning hair is not unusual in fact common for this condition. I have seen many heads of hair w/alopecia
    and it would be best if you checked with your doctor.
    Have you had blood testing? It is obvious that something is not quite right, causing hair loss (usual hair loss is around 80 to 100 a day, but there is another hair growing to take its place. Hair is always in three stages, growing, resting and falling out.This is normal.Of course it doesn't happen all at once.Sometimes treatments of chemo cause the hair to go into the falling out stage all at once, hence baldness. I will look up my texts if you like and give you more info.I noticed that you said not to thing you were going crazy. Of course not. This is a real condition that required attention...when you see your md. next time, make sure he or she definetly address this problem. A sudden trauma can also cause this. I would add that I had clients with fibro also and never noticed this. Please keep us updated...blessings, sheri
  6. AnnetteP

    AnnetteP New Member

    Hair loss is often associated with an underactive thyroid. I have very thick hair, but for many years I was losing so much I could see my scalp in places. Now that I'm on Armour thyroid (which contains both T4 and T3) my hair is now thicker than ever; in fact I have to have it thinned out monthly.

    There is also a connection between low thyroid and FM. I was diagnosed with FM, but all my pains have gone away since taking a strong dose of Armour. While this may not be the ONLY cause of FM, its certainly one I think everyone should explore.

    Please do a search for Dr. Lowe's site (board rules don't allow me to post the URL). On it he discusses FM and low thyroid. I think it could provide useful information for you to take to your dr. or at least point you in the direction you need to go.

    Another good site is Mary Shomon's thyroid site (again I can't post the URL, but if you type in her name in a search engine you should have no trouble finding it) and if you are looking for a book, I recommend, "Thyroid Power" by Dr. Shames.

    Good luck,
    Annette
  7. sofy

    sofy New Member

    Just left a rheumy appt and that is one of the question I was asked. Did I have any noticable hair loss and or bald spots. She seemed to be looking for spotty areas rather than in general. If she asked it must be a symptom. I dont have much hair as it is so am very glad not to be losing any.
  8. Annette2

    Annette2 New Member

    I went through menopause right after I was diagnosed with FMS and my hair started falling out and thinning. Once I went on hormones all was restored. You don't say what age group you're in, but perhaps hormones could play a part. Good luck!

    Annette2
  9. BrownSuga

    BrownSuga New Member

    Hi Sara
    I have been going through the very same thing, It all
    happened right after I was dxd with fibro.
    My hair had always been shoulder lenght.
    Went to bed one night and woke up with half of my hair gone,
    just on one side. Had to get it all cut off. I had been keeping it short up until about 2 months ago, I deceided to let it grow out, and again it fell out again. I had a really big bald spot in the back.....had to get it cut short just last week. I will tell you though, the hair falling out this time, I know it wasn't from any of my meds.
    because I had stop taking them, I had not taken any meds for about 4 months.

    Then, again one morning I got up and one of my eyebrows was gone:(

    When I was first dxd with fibro. I read a couple of books on it, and found that some ppl did lose their hair
    from the fibro.

    I also mentioned it to my doc and she did a thyroid test and of course mine came back normal also.

    And No you are not crazy!!!.....cause that would make me crazy!!!! :) :)

    Hugs, Suga




  10. joyof3

    joyof3 New Member

    I have very fine hair to start with, so i was very up set when my hair was coming out all over the place. it started after i got sick. It has gotten better. IMO i think some people lose hair with this DD.

    stephanie
  11. lease79

    lease79 New Member

    butt length thick hair, but I would regularily have periods where it would fall out in large amounts :(
    It had thinned quite a bit, but I don't have 'patches' yet.
    Earlier this year I got my Mum to cut it to just below my shoulders, as it was just too much work for me *cry*
    I have noticed that since that I the 'falling' out in large amounts has settled down.

    Lease
  12. sarasuzy

    sarasuzy New Member

    I just wanted to thank everyone that responded to my hair loss question. My doctor called me late on Friday and wants me to have some more tests done. Can't wait to see what they are. I am only 26 years old, so I don't think that my hair loss is related to hormones do to the fact that I take birth control pills (which is a hormone). Hopefully I will get this problem resolved before I'm completely bald. The balding isn't as bad as I'm constantly pulling hair off of my clothing and sweeping it up off of the floor. This gets awful tiring.
    Thanks once again,
    Sarah
  13. ssMarilyn

    ssMarilyn New Member

    A large percentage of people with FM also suffer from an underactive or "undertreated" thyroid. Please notice the emphasis I put on "undertreated"!! Many GP's will test your thyroid and then tell you that you are within NORMAL ranges. Well, I have to tell you that thats quite a sliding scale and you can be on the high end or low end. In my case, I was on the LOW end and felt like crap, thin hair that didn't grow, dry skin, no energy, depression, etc... I got smart and decided to see a specialist, an endoc. He said that I did indeed test on the LOW end of the normal ranges, and some people, including me, don't do well there. He increased my synthroid dosage, and within TWO weeks, I was bubbling with energy, no depression, clear mind and in no time at all, I had thick, luxurious hair once again!! Get your thyroid checked, but DON'T settle for being told that you are in NORMAL RANGES. That just doesn't cut it anymore! If your GP won't work with you on this, then it's time to move on to someone that will.

    Marilyn :)
  14. klutzo

    klutzo New Member

    Another angle not considered yet is that about 55% of FMS patients develop an extreme sensitivity to all sorts of chemicals, known as MCS.
    Ones that are notorious for causing hair loss are sodium laurel sulfate, and also ammonium laurel sulfate. One or the other or both are in ALL commerical shampoos. It is what makes the lather. Try a shampoo from a health food store with no SLS or ALS in it. It will take at least 3 weeks to get all the old shampoo out and stop having a lather. Within 4 months of switching to a non-lathering shampoo, I had all my lost hair back. When I first got FMS, I woke up with hair all over my pillow and it clogged the drain whenever I washed it. I was afraid I'd end up bald.
    It may very well be subclinical thyroid, but if it turns out not to be your thyroid, try this and see if it helps.

    Also, 1 of 3 men inherit baldness, and 1 in 6 women also do. I still have this problem, but it is mild compared to the other. With women, it takes the form of a slight thinning all over, usually in middle-age, and a moderate thinning in a semi-circular shape at the very top, front of the head. If that is your pattern, look at your relatives! It may not be Fibro at all.

    I hope you figure it out.
    Klutzo
  15. Gigo

    Gigo New Member

    This may apply to you as well--

    I have FMS and CFIDS and... Some months ago my once very thick hair began falling out, my nails were ridged/spliting, etc., etc. Fortunately I have a wonderful physician who knew low levels of amino acids could be the problem. All were very low which explained the hair loss along with other problems. Further testing revealed that the culprit was Leaky Gut Syndrome--mal-absorption of nutrients. You may want to ask your doctor to check all your amino acid levels.