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Thread: Headaches and Fibromyalgia

  1. #1
    Super Member Lneal's Avatar
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    Headaches and Fibromyalgia

    My daughter was just diagnosed with fibromyalgia and one of her biggest problem is headaches. I am talking about the kind that sometimes sends her to the ER.Does anyone have similar problems? Any suggestions on what really helps with fibromyalgia?

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    Power Poster alikat110's Avatar
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    I am friends with a pain management physician who treats fibromyalgia......he says the only true way to treat it is with cardio exercise. He says that water aerobics is best because it takes pressure off weight bearing. It is extremely hard at first, but has tremendous results. He recommends 30 minutes daily.

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    Super Member greenini's Avatar
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    Quote Originally Posted by Lneal View Post
    My daughter was just diagnosed with fibromyalgia and one of her biggest problem is headaches. I am talking about the kind that sometimes sends her to the ER.Does anyone have similar problems? Any suggestions on what really helps with fibromyalgia?
    Please be careful about recommending exercise for fibro. Yes, it can help, but we are overly sensitive to everything and exercise should only be done in tiny amounts at first and the increase should be tiny as well. Say a 5 min walk every other day for a week or so. If that is tolerated try daily at 5 mins. After that I'd increase it by another 5 mins every other day and so forth.

    The best bet is to help her find a good rheumatologist, they are the ones who treat Fibro. And make sure it's one who believes it's physical disease, not just depression. Many of us are depressed, but wouldn't you be if suddenly your world turned upside down and you couldn't get any sleep and everything hurt all the time and your brain refused to work the way it always has? Please don't allow her to try to overdo and "work thru it". Many of us feel we hurt ourselves badly by doing so. I've had it since '79, even tho I didn't get diagnosed until the 80's.

    I take Maxalt(prescription) at the first sign of a head ache and t seems to work for me. She might also try keeping a diary of what foods/smells/activities lead to headaches.

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    Has she been checked for Lyme Disease? My daughter has been dealing with episodes of body aches and severe headaches and she is now being treated for Lyme Disease. They can have some very similiar symptoms. Hope things ok, good luck!!

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    Super Member QuiltingKrazy's Avatar
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    My sister has Fibro not sure about the headaches. She has gone thru every med there is, for pain, depression, arthritis etc. She has tried natural remedies, and tried nothing at all and everything inbetween including keeping a journal. She has basically accepted what she has and learned to deal with good days and bad days. Currently she has found Cymbalta has really helped her with pain and the "depression" they say she is in. She just calls it hormones! lol She had tried this a good while back but couldn't afford the even to copays since it is a top tier drug. her doctor has agreed to keep her in samples for a year. so far about 6 months and it is made a major difference. BUT... the most effective thing for her is talking with others who have it!
    A support group is wonderful! Even if it is only someone who can truly understand how you feel. Just try to keep your spirits up and be around people and things that make you laugh alot! Laughter has always been the best medicine! Good luck!
    Lisa B in NC
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    Junior Member crafty3236's Avatar
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    I also have fibro, and unless you have it there is only one way to explain the pain,remember labor pains? well that is kinda
    like that fibro pain, starts out weak slowly gets stronger and when you think you cant take it any longer it slowly weakens but then starts all over again.
    how is she sleeping? does she sleep in recliner ? we got 2 twin beds side by side then we each have control of our bed
    (we have the kind that puts head up n or legs up kinda like hospital bed)we also got memory foam mattress,has improved on my sleep a bit, I wish your daughter the best

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    Super Member Sheila_H's Avatar
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    I also suffer from severe cases of fibromyalgia we've tried different treatments the only thing that helps me lessen the pain is narcotic pain management and Lyrica we tried the Cymbalta but that didn't help much. I have some exercises I can do with the big ball and when I can handle it I go to aqua water classes. Problem with treatment options is it depends on each individual problem there is no one answer to the question.

    I wouldn't suggest any one particular exercise it all depends on what your body can handle, some days I'm great and can go out and walk around my neighborhood. Other days the pain is so severe I can barely make it from the bed to the bathroom. Like most exercise facilities will tell you always get your doctor's permission to start classes or training. I like crafty have a lot of pain at night with muscle tremors and shakes so again it's to meds to sleep.

    Best thing for your sister is to see a doctor and get a referral to a pain management specialist.

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    Super Member seamstome's Avatar
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    Marvelous work is being done with fibro within the chiropractic neurology world. Yes it is with diet and exercise/oxygen. If you are serious about it and committed to being compliant, check out Dr Michael Johnson's work out of Appleton WI.

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    Senior Member Anna.425's Avatar
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    Check out Healingwell.com. It is an online support group for folks that have health challenges. I posted a link to the fibro thread. They will be able to support and advise.

    http://www.healingwell.com/community/default.aspx?f=24

  10. #10
    HMK
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    I also suffer from Fibromyalgia and what helps me is going for walks and practicing Taoist Tai Chi http://www.taoist.org/

    It has kept me from having flares and so far has kept the pain under control. Just remember that things need to be done in moderation.

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    You might want to subscribe to the CFIDS Journal (Chronic Fatigue, Immune Dysfunction Syndrome). The Journal really kept me up to date on the latest treatments and other people's experiences.
    I was diagnosed with both CFIDS and Fibromyalgiaback when doctors didn't believe it existed. I finally went to alternative medicine after going through physical therapy several times. I went to an Osteopath (DO) who practiced like a Naturopath, a chiropractor who did allergy treatments (NEAT as well as NMT (The Feingold Method). I also took Cymbalta for a while and then changed to Pristiq. I went through the worst of the symptoms for about 10 years. It was certainly no fun.

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    Super Member Lneal's Avatar
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    My daughter has had many test done to rule out the possibility of other diseases. She does have thyroid problems ( which she takes meds for ) and had physical therapy for 5 months without showing any improvement. Her dr didn't realize it was fibromyalgia at the time of therapy. He put her on Cymbalta and her headaches became more severe. The ER doctor recently took some tests to make sure there were no tumors and told her the pain was muscle related. She has some stress in her life right now and I wondered if this could affect the intensity of the headaches.

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    Smile Do what works, use your imagination in moderation, with determination

    I was diagnosed 22 years ago. I have tried so many meds, and stayed away from many. I refuse to try the new meds, just out of fear of severe side effects. I have learned to deal with the pain, with mind over matter. I keep busy because laying in bed makes the aching and the depression worse. I use an exercise ball for stetching and try to walk. I was diagnosed/undiagnosed with rheumatoid arthrits last Dec. So far the specialists re-diagnosed me with fibro. It is a constant battle, but I try to go to my kids school to volunteer twice a week. It takes alot out of me, but I have to keep moving. Headaches are dealt with a homemade neck warmer (stuffed with rice) then I rub vicks on my temples, take 800 mg ibuprofen, close the blinds and try to sleep it off. Due to back/hip problems I sleep kneeling on the floor with my upper body on my bed. Strange?? Yes. Do what works, try crazy things, there are no real answers. Most of all don't give up, stay positive and stay as active as possible!! Good luck and God Bless

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    Sorry guys and dolls, I sympathize and thank God for everyday of my good health. Will pray for all of you that your
    burdens be lifted. Keep on keeping on.
    Anne

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    I have Fibro for several years. Really do not know when it started because I thought it was arthritis. I have been going to a Rheumatoligist since 1998 and he suggests doing what you feel like. Between the Fibro and the extreme arthritis there are times there are times I lay in bed. For the past few days it has been very difficult to walk. Needless to say, falling down is one of my biggest fears. I do fall probably once a month, need a hoist to get up.

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    Super Member Sheila_H's Avatar
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    I'm the same way, DH gets on my case sometimes because my good days, I vacuum and mop floors, do laundry, run errands, and then pay for it by being almost crippled the next two days. I loose my balance sometimes and fall, I've taken some big falls. I do find that Lyrica does help and I haven't notice any side effects to the med. I push myself through the pain a lot of times because just giving up to the illness isn't in me. There are days when my depression is bad but those are the days I come on here and read through a lot of posts and it makes me happy.
    Quote Originally Posted by BarbM32 View Post
    I have Fibro for several years. Really do not know when it started because I thought it was arthritis. I have been going to a Rheumatoligist since 1998 and he suggests doing what you feel like. Between the Fibro and the extreme arthritis there are times there are times I lay in bed. For the past few days it has been very difficult to walk. Needless to say, falling down is one of my biggest fears. I do fall probably once a month, need a hoist to get up.

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    Number one, get a second opinion as Dr. can be wrong. I had terrible migraines, started in my teens, continued until one Dr told me they were caused by harmone in balance, especially estragen. Just a thought.

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    Super Member irishrose's Avatar
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    I was diagnosed in 1983. Headaches have not been a symptom for me, thank goodness. Headaches are so much harder to work around than body pain. Has your daughter been treated separately for migraines? I am finding a little relief from Lyrica, but I can only take a half dose if I want to stay upright. No side effects from a reduced dose. What helps? Chiropractic, supplements, hot baths, walking. Magnesium Malate from the natural food store is a Godsend. 6 a day when under attack, one a day for maintenence. Just magnesium and malic acid from apples, but it works wonders for me. It will stop a muscle spasm in its tracks. Of course if you take magnesium, then you need to balance it with calcium but that's not hard to do. Give your daughter a gentle hug from all of us who share her pain.

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    Super Member Ditter43's Avatar
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    I have suffered with fibro for years. Fortunately headaches like you describe have not been a problem for me. I agree with getting her tested for Lyme disease. As Nicole said, they have many symptoms in common. Many people who have Lyme have been misdiagnosed with fibro.

    From what I know of the two, I think I would rather have the fibromyalgia, though it is a terrible condition to live with too. I have taken many medications and combinations of medicines to finally keep mine somewhat controlled. That can take years. A good rheumatologist can be a big help. We are all different in symptoms and meds, so what works for one of us, doesn't necessarily work for someone else.

    I wish her luck and pain free days.
    I quilt, therefore I am.

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    I know nothing about fibromyalgia but a bit about headaches--the 3 day migraines, the kind that when your husband walks across the carpet, the noise & vibration are excruciating. Thank the good Lord, I outgrew them. I know now after reading the book titled something like "Your body's many cries for water", that I could have helped myself part of the time. I'd advise anyone with any illness to drink at least the recommended 8 glasses of water a day (Coffee etal doesn't count as it makes you lose more water than you took in).

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    Power Poster Mariposa's Avatar
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    I have found that gentle massages are wonderful-and not nearly often enough! I have a feed corn bag (can be rice or whatever) and it helps with shoulder tension and headaches. Drink lots of water, eat apples (for the malic acid).
    Please have her get a "saliva" test done for her hormone levels. Very different from blood tests. Hormone imbalance will also contribute to the headaches. I get them so bad, I feel like my hair follicles are on fire!
    Be a blessing to others, as you may entertain angels unaware!

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    I had terrible migraines for years especially when I was having Chronic Fatigue Immune Dysfunction Syndrome/Fibromyalgia. When I went through allergy treatments (see above post), it became clear that my migraines were from allergies. Believe me when I say I had migraines that lasted 3 days and included throwing up and not being able to eat or drink. Your stomach shuts down when you have a migraine. I have very few migraines now. If one starts, I take Alta brand Magnesium Chloride, 4 at a time, and can be repeated. The Rx's for migraines simply delayed the symptoms for me. The Magnesium Chloride would get rid of them. I would lay in bet with ice packs on my head during the worst ones. One of my doctors would give me a magnesium chloride IV if I could get to him. When you are off water for over 24 hours, you are in trouble.
    God bless all of you and give you wisdom about the causes of your sickness and pain. May God lead you step by step to whatever you need to come into complete wholeness. He is good all the time.

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    I have fibro myself so I understand what she will deal with. Get a good Dr. who deals with the disease & understands. Maxalt XL for headaches for sure. She will have a thing called fibro fog. There is a good website also. Go online learn all you can. But water is the best exercise it doesn't strain the body. Don't do exercise without Dr. help or PT. Go online & read all the real experts have to offer. I would be glad to talk to her. Don't forget to laugh even through the tears.

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    My environmental doctor I have been seeing since 2000 suggested diet to control headaches.
    He did a lot of food allergy testing. Aspertame and artifical sweeteners
    caused my migraines, sugar cause my headaches. Illiminating these items from my diet has helped me considerably.
    I would start with food allergy testing to see what foods she is allergic too.
    Sticking to a diet will help many of the symptoms. Drugs are not the answer.
    Supplements/vitamins are more beneficial for fibromalygia.

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    Wow! There are a lot of us who suffers from Fibro--something that just until a few yrs ago the Dr.s would look at you funny and send you on your way. I bought the book, Fibro for Dummies when I was first diagnosed and it had a lot of helpful hints in it. I use both Lyrica and Cymbalta. Lyrica, was given the OK to treat Fibro a few yrs ago but it is for pain and Cymbalta is and anti-depressant just recently OK'd by the FDA. Get great results with the use of the two of them. The biggest thing I have found is Pace yourself..especially if you are having a good day. I get the headaches but they are like migraines. Tell your daughter it never gets better but it is not fatal and to try some of the little tricks everyone has told her and she will find the ones that work for her.

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