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Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
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  1. meadowlark

    meadowlark Senior Member

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    Has anyone experienced significant hair loss since developing this illness? My hair has always been thin and fine, and because I'm now 60, I know that more thinning should be expected. But it does go down the drain/stay in the comb at a scary rate, and within the past six months I've developed five hair-free patches on my scalp, about an inch in diameter. (Wish to God I had the money for a wig!)

    Has anyone else with ME/CFS had unexpected hair loss, or is this just what fate had in the cards for me anyway?
  2. Valentijn

    Valentijn Activity Level: 3

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    A lot of deficiencies can cause this ... biotin (B7), iron, thyroid, etc. Also infections, genes, or autoimmune disease could cause it. Not very helpful :-(
  3. Ocean

    Ocean Senior Member

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    Yes I do have more hair falling out but I don't have any bald patches.
  4. Cindi

    Cindi Senior Member

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    Hi
    Do you take DHEA. Excess DHEA may cause hair loss.best wishes
  5. alice1

    alice1 Senior Member

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    low cortisol means lower hormone levels.i'm post meno(12 years) and my hair started to fall out 8 months ago.
    I'm on a low dose of hormones plus low cortef to help a variety of problems.hair loss being one.
  6. Boule de feu

    Boule de feu Senior Member

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    2003 - started losing my hair and a lot of weight

    2004 - we can start seeing the difference on photos

    2005 - always sick. Dr. says that I have a bug who loves me very much and won't go away

    2006 - my whole appearance has changed drastically, and we can tell which photos were taken prior to my illness
    2007 - during a spinal tap procedure, a very mean hematologist who believed my illness is psychosomatic asked me when did I start pulling on my hair??? :-(

    2011 - still losing my hair and starting to feel very sad about it.

    Last year - i bought a wig but I find it too hot during the summer.
  7. Mary Poppins

    Mary Poppins PJ Princess

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    Do you use product on your hair? Colour, styling, leave in conditioner? What sort of shampoo do you use?

    I have experienced hair loss and thinning over the years. About 5 years ago I was leaving a trail of waist length black hair in my wake - lovely :D

    I experience very unhealthy hair from time to time and it has usually been resolved by chopping the whole lot off and starting again. Not a realistic intervention for some people, I know. Cutting one's hair can be a terrifying experience.

    Can you wear hats/scarves if you feel unhappy with the hair loss?
  8. meadowlark

    meadowlark Senior Member

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    Hello all: Many thanks for the kind replies, and I'm sorry to be so late responding.

    A few years ago, I accompanied a dear friend who had cancer to a wig/hat seminar that her hospital provided, and I'm glad I paid attention, as itching and heat were both addressed.

    Supposedly a handwoven, human-hair wig at the $3,000 price point eliminates itching and reduces heat. Obviously, unless I win the lottery, a wig that expensive is out of the question. But oddly, I've always wanted a wig, even as a teenager .... just for fun, you understand, not for necessity. So at least I don't see wigs as something shameful, purchased to hide some inadequacy... if a wig was obviously not real hair, I could cheerfully ask people how they like my artificial 'do. (Flamingo pink, maybe.)

    Boule de Feu: Yes, it might be hard to endure for long periods in the summer ... but at least here in Canada (I'm in Toronto) we tend to have long winters. Interesting that you have had both weight and hair loss. I initially had a drastic weight loss; now constant bed rest is causing weight gain. Strange how persistent vanity is: along with the illness, weight gain and less than a cup of hair wisping over my head -- dull-looking wisps at that, what my sister calls "sick hair"... just add insult to injury.

    Mary Poppins: I use baby shampoo and a wash-out conditioner. It has always been too fragile for anything else. No dyes, perms, or chemicals.

    Alice1: Thank you: I will ask my doctor about the hormones.

    Cindi: Thank you too! I'm not on DHEA.

    Valentijn: Re autoimmune diseases, a young relative of mine had a summer job at a hair salon that makes wigs at reduced prices for people with cancer or alopecia. Of course, this is the right thing to do. When she asked if help could be offered to those with autoimmune diseases, she was told that no salon could stay in business if they did. There may be some truth in that.

    At any rate, I found myself cruising Etsy this morning looking for hats, snoods, bandanas, etc., designed for cancer patients. There's no question that this would look better than my real hair. But. envisioning myself that way, I realized that many people would assume I have cancer. And I thought, "Well, at least I might get some sympathy/respect then." I'm not proud of that, especially as I've lost dear friends to cancer. It's a symptom, I guess, of loss of dignity.
  9. Boule de feu

    Boule de feu Senior Member

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    Have you tried this product?
    http://nioxin.com/en-US/products/product-system-kit-page.aspx?id=83
    I was surprisingly pleased. I ended up trying this for two weeks (while staying at my dad's place)
    and I found it made a bit of a difference. I will order more for sure.

    P.S. I'm not trying to sell this product. I'm not sure it would work for everyone with thinning hair.
  10. ukme

    ukme Senior Member

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    Has anyone had any luck with reversing this hair loss using vitamins etc? My teenage daughter is now getting this, could it be linked to low cortisol as alice1 posted? Never heard that one before.
  11. Enid

    Enid Senior Member

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    Apart from all the advice above can I add - significant hair loss in early days which lessened and now stabilised with correct thyroxine treatment (and various recognised ME supps over the years - can't specify which in particular and think thyroid treatment did the trick).
  12. rydra_wong

    rydra_wong Guest

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    I take excessive DHEA and no hair loss. hyperthyroid causes hair loss. Maybe you are sub-clinically hyperthyroid?

    Rydra

    I think you really want to know how to prevent hair loss. I should tell you that even though I was hyperthyroid for almost a year I did not lose hair and that is a well known symptom of hyperthyroid. I suspect it is because I take high dose antioxidants, which you might try. I am almost out of battery, but there are articles at www.lef.org regarding preventing hair loss. Good luck

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