Discussion in 'Fibromyalgia Main Forum' started by LADYBUG2, Jun 24, 2003.


    LADYBUG2 New Member

    Does anyone have a problem with keeping their eye lids open?
    A relitive of mine has been told she has BLEPHAROSPASM, & her eye specialist said the only thing for it is BOTOX INJECTIONS. Could this be connected to Fibromyaliga Syndrome,CFIDS, ECT?
    Because she has been dignosed with both, and has been sick with CFIDS, & Fibro since 1988.

    Fibro affects our muscles,so I would think it " could"
    effect our eye muscels,or is it a genetic problem? or maybe a drug related problem.??

    Madwolf, any ideas about this being connected? As each of us have all kinds of symptoms.. I am asking for her as she can't keep her eyes open only for about 15 minutes to even read or watch TV. She is becomming very afraid, of what the future might bring...As we all are.



  2. sggas

    sggas New Member

    I am not sure if it is the same type of thing, but I know that Moe had a problem a few months ago with his left eyelid twitching. It almost drove him crazy......day in and day out for about six weeks. He asked his doctor about it while it was happening and the doctor didn't suggest any solutions or causes. We just figured it was this DD and I guess it was, because one day it just stopped and he has not had it since.
  3. cara

    cara New Member


    Your relative has a form of Dystonia which causes muscle spasms. I have it in my neck which is Cervical Dystonia and I also have CFS. Both conditions started at the same time. But there are many people with CFS that don't have Dystonia and many with Dystonia that don't have CFS! So I have no answers if it is all connected!

    Dystonia can be a genetic problem but this is ususally associated with generalised Dystonia which comes on in childhood.

    Blepharospasm is usually treated with botox injections about every three months.

    If you go to Dystonia-bb.org there are message boards and I am sure will help and give further advice.

    My heart goes out to your relative. Dystonia is an awful illness.

    Love and light. cara
  4. Dee33K

    Dee33K New Member

    My hygienist had this. Bless her heart, she fought it like mad. It finally got the best of her. Reading the boards and being part of a group like this will help. The botox never helped her much, neither did the drugs. She finally went on disability. First time through. She wears sunglasses most of the time- light sensitive and it helps a lot. She can use early morning hours to get things done then has to rest her eyes a while. She had the surgery done to lift the lids, even lifted the forhead, that helped some. She had her computer set into a flat surface as looking down helps. It will never go away, the best she has done is get rid of stress of working and that has helped it to not get worse at this point. She had never been sick a day in her life before this, healthy as a horse. 52 years old.
  5. Mikie

    Mikie Moderator

    Just a request: Could you please keep the titles of your posts to one line. When you use two lines, it causes someone else's post to prematurely roll over to page 2, possibly before anyone has a chance to read it. Thanks for your help.

    Love, Mikie
  6. Jasmine

    Jasmine New Member

    I used to have eye lid twitching and painful eye spasms but since I started the magnesium glycinate they have almost completely stopped.
  7. Stillkicking

    Stillkicking New Member

    This is of course a neuromuscleur problem. When I had Bells palsey, a facial paralysis, I couldn't close my eyelid and had to tape it closed at night. That is related to CFS only because it was caused by an infection effecting the facial nerve. It seems that this is also affecting the facial nerve but instead of paralysis the nerve is stimulated and muscle is contracted. This is something like the muscle contraction of FM when the muscles can't relax.

    In this instance, she might try acupuncture to stimulate and relax the eyelid. She might also try using accupressure around the eyesocket area herself. Something is disturbing the nerve. Does she have any nasal/sinus problems which could be contributing?
  8. Shirl

    Shirl New Member

    I agree with Madwolf and Jasmine, I had a problem with that twitching, closing eye thing too.

    But after starting the magnesium glycinate (Pro Energy, sold here), about 2 1/2 years ago, I don't have the problem at all anymore.

    As for the calcium, I do eat a lot of dairy and drink milk, so I don't take a calcium supplement, I am sure I get enought with the dairy.

    Tell your relative to have her doctor check her magnesium/calcium levels, that maybe her problem and it can be solved with these minerals/vitamines.

    Most all people who suffer from FM/CFS are deficient in magnesium.

    Sure hope she gets some help soon, I know how miserable I was, I love to read and it would just be impossible with the eye thing.

    Shalom, Shirl