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Thread: does anyone elese have fibromyalgia

  1. #1
    Senior Member minnow895's Avatar
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    i have just recently been diagnosed with it and am trying to learn about it .
    if you have fibromyalgia pleas give me ideas of how to deal with it any suggestions are greatly apreciated


    god bless each and everone of you

  2. #2
    Super Member amandasgramma's Avatar
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    Yes, I was diagnosed with fibro/chronic fatigue over 15 yrs ago. I maintain and keep them under control by watching the food additives. Look up www.truthinlabeling.com and read what they say. I found my symptoms are bad when I ingest MSG and Aspertame too much. A little for me is okay, too much and I'm sick. It may be other additives are bothering you....do an anaysis of EVERYTHING you eat...who knows, you may end up being well again -- I am!!

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    My step mom found relief by eliminating gluten from her diet. When she does eat gluten now, she knows that she will be hurting that night or the next day.
    Carol B

  4. #4
    Super Member damaquilts's Avatar
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    Fibro and CFS here too. For the last 10 years. Doesn't seem to matter what I eat or don't eat Except MSG has always bothered me and Aspartame I don't use. Don't like the after taste of artificial sweeteners. The bad part about these diseases is they hit everyone differently. I find changes in weather good or bad can just send me to bed in pain. The fatigue is the worst though most times. I hate feeling tired all the time.
    I get a newsletter , hope its ok if I put the link here .
    It keeps up on the research being done.
    prohealth.com/em/EM081110B

  5. #5
    Senior Member minnow895's Avatar
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    thank you for the link it may help to be more informed

    Quote Originally Posted by damaquilts
    Fibro and CFS here too. For the last 10 years. Doesn't seem to matter what I eat or don't eat Except MSG has always bothered me and Aspartame I don't use. Don't like the after taste of artificial sweeteners. The bad part about these diseases is they hit everyone differently. I find changes in weather good or bad can just send me to bed in pain. The fatigue is the worst though most times. I hate feeling tired all the time.
    I get a newsletter , hope its ok if I put the link here .
    It keeps up on the research being done.
    prohealth.com/em/EM081110B

  6. #6
    Power Poster nativetexan's Avatar
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    I do but am not doing much for it. looking for work again but not heavy lifting and standing for hours making copies of huge code books like i did before, i doubt i could do that again.

  7. #7
    Super Member jetnica's Avatar
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    I was diagnosed in '96. My big trigger is stress. If I'm not careful and get too wrapped up in work, my body will shut down and I won't be able to move.

    For me, there's a series of things I can watch for to know when it's time to walk away for a while. First my headaches are massive - no relief possible. Then my back starts seizing up and shouts at me to stop. If I ignore those two things, my digestive system will start yelling, and it's the last thing to shout before a day (or three) of nothing but rest will fix me.

    I don't have a certain food, but cold weather is murderous to me. It's a battle in the winter, my boyfriend likes the apt nice and cool year round - one of the reasons I think I started quilting is so that I could have more blankies to cuddle up with when it's cold.

    I've been going to the chiropractor and I am exercising again, I felt the best when I was "in shape" when I was in college. It's tough to exercise on bad days, but usually what happens is a good nap after the gym and I'm good to go. (Come to think of it, that can't be healthy)


    I guess the biggest thing with Fibro is to learn to listen to your body first. It will tell you what it needs and when enough is enough. Be careful with the research, especially some of the poo that is on the internet - people will say CRAZY things and have CRAZY fixes for Fibro. The links already listed are good ones.

  8. #8
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    Quote Originally Posted by amandasgramma
    Yes, I was diagnosed with fibro/chronic fatigue over 15 yrs ago. I maintain and keep them under control by watching the food additives. Look up www.truthinlabeling.com and read what they say. I found my symptoms are bad when I ingest MSG and Aspertame too much. A little for me is okay, too much and I'm sick. It may be other additives are bothering you....do an anaysis of EVERYTHING you eat...who knows, you may end up being well again -- I am!!


    Aspartame will put me in bed for 3 days - literally! Anything marked "Diet" or 'artificially sweetened' is off limits, as is Pepsi - it's loaded with it. Coke in *very* small amounts is OK.

    KFC is also off limits because of the MSG. The 'secret' herbs and spices mixture is 49% MSG - 1% below the Australian legal limit. Red Rooster is OK

    Preservatives also play hell with my fibro. I must be the best label reader in the local supermarket.

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    i started a personal diary here on FMS. i have it,been diag since 1982,when it was called fibrositis. they was only one paragraph on it at the library back then. now there are all sorts of books and info out there.
    there is a magazine called FM Aware, out of canada i believe.
    there are message boards just for it too. but i got tired of the bit*ch sessions, i am more interested in learning to live with it.
    i have given up so much, sold my motorcycle,gave up my womens pool league i had for over 10 years.
    the biggest thing is learning to delegate things,letting housework go..the dust won't kill you.
    i have a beautiful garden, and i have used big rocks to sort of mark off sections, so i don't weed or putz past that section. if i do, i pay for it,in bed or hurting or end up in a flair.
    i have had to learn to relax. i WAS a type A personality. and let me tell you, it will hurt you to no end,if you don't change.
    people just don't understand, because you don;t LOOk sick.
    google "the spoon theory"..thats it is a nut shell. i may have the link apart of my signature, i can't remember..lol
    memory is a big issue. i have learned to write everything down, i rely on my calendar and i have a dry erase board in the kitchen, i use all the time. i set my alarm on my cell phone to help remember things also.
    water exercise is the best for FMS, you don't feel like exercising, but it is important to MOVE your body..even when you feel you can't.
    i wish you well and Blessings. we are all here,to support you. if there is anyway we can help you..just ask. Kim

  10. #10
    Super Member damaquilts's Avatar
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    Kim you have just described my life. I ration my energy. I took yesterday completely off. NO sewing , cleaning, other than dishes. spent most of the day on this board. (evil thing) lol
    I also have CFS which makes it worse because while exercise helps fibromyalgia it makes CFS worse.
    And I am with you everyone says but you look fine. I just want to answer And you look smart but I never have.
    I know when I have pushed myself too far. I lose my voice, my lymph glands in my neck swell and I get a sore throat. Then I know I am out for the count for about a week.
    Also the meds they advertise like Lyrica . The side effects were awful. As was the cymbalta.
    You need to just learn what your limits are. Don't push yourself past them.

  11. #11
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    Quote Originally Posted by damaquilts
    Kim you have just described my life. I ration my energy. I took yesterday completely off. NO sewing , cleaning, other than dishes. spent most of the day on this board. (evil thing) lol
    I also have CFS which makes it worse because while exercise helps fibromyalgia it makes CFS worse.
    And I am with you everyone says but you look fine. I just want to answer And you look smart but I never have.
    I know when I have pushed myself too far. I lose my voice, my lymph glands in my neck swell and I get a sore throat. Then I know I am out for the count for about a week.
    Also the meds they advertise like Lyrica . The side effects were awful. As was the cymbalta.
    You need to just learn what your limits are. Don't push yourself past them.
    i see a shrink/therapist to deal with the depression also...(because of my lack of being able to do things)
    i take cymbalta, no issues
    plus a few other meds.

    i go for a shot or teradol (spelling?) occasionally, when in a bad flair..it really helps. maybe 2 or 3 times a year. it is an anti-inflamatory. yesterday i did too much..so i was in bed a 7:30. pacing yourself, like you said, is most important!

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    Ditto here. I am in the midst of a flare now and some of these tips may help....had it for years.Im going to try the food diary thing.

  13. #13
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    Yes I do. I have had it since 2004. I see a pain specialist, and even though I take medicine for it and watch my diet, I still get sick if I overdo it. there is a book you might want to get. it is From Fatigued to Fantastic by Dr. Teitelbaum. There is also a web site, Fibro Talk, that has tons of helpful information andd support.

  14. #14
    Super Member damaquilts's Avatar
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    I am on citalopram/Celexa it is the only antidepressant I could take without crazy side effects and I take half of what was prescribed. 10mg instead of 20. I am doing ok most times on it sometimes I have to take the 20 but I can only do it one day can't take it 2 days in a row. I am super sensitive to medications. On top of the fibro I have had 2 aortic aneurysm surgeries in the last 10 years. The first is what set it off. I also have fought depression all my life and finally had a doc diagnose me with PTSD I thought he was nuts himself until I started reading up on that and then it made sense. I flip out if there is any stress in my life at all. Need things totally calm. Like that happens right? LOL

  15. #15
    Senior Member Born2Sew's Avatar
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    Quote Originally Posted by damaquilts
    I am on citalopram/Celexa it is the only antidepressant I could take without crazy side effects and I take half of what was prescribed. 10mg instead of 20. I am doing ok most times on it sometimes I have to take the 20 but I can only do it one day can't take it 2 days in a row. I am super sensitive to medications. On top of the fibro I have had 2 aortic aneurysm surgeries in the last 10 years. The first is what set it off. I also have fought depression all my life and finally had a doc diagnose me with PTSD I thought he was nuts himself until I started reading up on that and then it made sense. I flip out if there is any stress in my life at all. Need things totally calm. Like that happens right? LOL
    Sometimes I'm not sure if my doctor really knows what all I have. She just says Mixed Connective Tissue Disease, but when I look it up it doesn't show what all she says I have. First she said if I had inflammation I didn't have fibro, yet I have so many symptoms of it and almost all of the tender points. However, I do have inflammation. Then about a yr ago she says I do have fibro along with RA. Perhaps I am still evolving...

    The issue of stress nails it for me and I can't stand stress anymore. Although my life is still very stressful to a large extent, it isn't as bad as it has been in the past. I really need to research PTSD more. I was counting up all the pills and Rx's I take now and it is 12. I don't know which is worse sometimes the pain or the fatigue or the brain fog, or taking pills. None of it is fun, and how I love "but you look so good". Inside you feel like something the dog drug home and the cat wouldn't have.

  16. #16
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    Been living with Fibro for 16+ years now.
    I went off all those pain meds about 10 yrs ago. Sometimes I think they made me feel worse...? I resolved myself to knowing I'm going to have good days & bad days. Try not to do a lot of heavy lifting....and I agree with everyone else...ASPARTAME is a NO-NO!! That pain is unbearable!
    Winters are worse. The cold really kicks it into high gear and we heat with wood, so we never have a constant warm temp in the house. I hate winter!
    Best thing I have found for me is heat therapy.

  17. #17
    Super Member Ditter43's Avatar
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    I was also diagnosed back when it was called fibrositis. The fog was one of the reasons I retired from nursing when I did. I was so afraid of making an error that would hurt one of my patients.

    Fortunately since I started taking Cymbalta, my flare ups seem to be shorter. I don't think they are that much milder though. This one I am in now is a doozy, not sleeping and a lot of pain. I just keep telling myself it will pass.

    I think a lot of us have a tendency to overdo and not take frequent enough rest periods. I jump from one thing to another, not doing any one task for too long at one time.

    Today I am hurting and feel like a zombie because I couldn't sleep last night. It will definitely be a slow day for me!!!
    :|

  18. #18
    Junior Member frogella's Avatar
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    I have had Lupus and Fibro since 1997. I am some muscle relaxers, and pain blockers at night. I have trouble sleeping, and the fibro fog is sometimes really bad ( like today :-) ) and the heat absolutely kills me. I try to look at the bright side, it could be worse. At least I am not dying, though some days you would think that. Keep telling yourself:
    I control the disease, the disease does not control me........

  19. #19
    Power Poster BellaBoo's Avatar
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    I too was diagnosed with fibro years ago. I had no idea what it was. The Dr. told me to change my diet. No processed foods, no artificial anything, no sodas, no high fructose corn syrup, nothing but whole foods, lean meats, dairy, fruits and limit wheat products. It took time but that's all I buy now to feed the family. I seldom have trouble with fibro. I get extremely tired out of the blue sometimes but I don't hurt anywhere. I think a disciplined diet is a big factor in keeping the fibro under control. It worked for me.

  20. #20
    Senior Member countrymaid's Avatar
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    Wow, thank you for this discussion. I go to the pain clinic on Friday. I hurt my back a number of years ago but have felt for a while now that it was a bigger issue than that. I went off my Cymbalta this summer because of a change in insurance. After two months of hell, I got it re-approved. I can't believe what a difference it made in just a few days. I think I'll have a good chat with the doctor at my appointment. I also made a switch to diet soda and I'm rethinking that move as well.

  21. #21
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    I can lay around and feel sorry for myself or I can get up and face the day straight on. I am going to hurt no matter what so I do the best I can and suffer. No one wants to hear about my aches and pains so i don't tell them. I have lost 34 pounds which has helped.

  22. #22
    Senior Member Feather3's Avatar
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    Quote Originally Posted by minnow895
    i have just recently been diagnosed with it and am trying to learn about it .
    if you have fibromyalgia pleas give me ideas of how to deal with it any suggestions are greatly apreciated


    god bless each and everone of you
    I was dx'd with Fibromyalgia in 1999. I tried all the meds, depression(5 kinds), pain meds (several), Lyrica, etc., you name it & all they did was give me tons of side effects to deal with & never touched my pain. I get massive triggers/muscle knots in my back & shoulders. I have come to learn to pace myself. Over doing anything causes pain & more fatigue. Exercise, altho it may cause some pain at first, is the number one treatment that has helped me. Other than that I've tossed all the meds & now take 10 vitamins a day. Vit B, C, D, E, CoQ10, Amino Acids, Multi vitamin, Potassium, Calcium, Magnesium. I eat healthy & avoid preprocessed foods & artifical sweeteners. I rest/sleep when I'm tired. Cold increases pain ten fold. Massage is a must to not only loosen muscle knots/triggers, but also lowers stress. Long trips in the car cause pain & fatigue, so I usually try to plan a day or so down time after a trip. Any surgery, which I've had seven ina 23 month period, causes a fibro flare. A flare can take a few days to a week or more to shut down. Each person is different, as to how this nasty disease affects us, so you will need to find what works best for you. You may also need to try things more than once to see how they affect you. I've actually gotten better as time has gone on, due to learning how to deal with/treat my fibro symptoms.

    Best wishes & gentle hugs :)

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    See if you can get hold of a copy of " Living Well with Chronic Fatigue Syndrome and Fibromyalgia "(Living Well (Collins)) (Hardback) By (author) Mary J. Shomon.
    http://www.bookdepository.co.uk has it for $US 13.28 and $A15.12, with Free WORLDWIDE postage, (they also have 1587 books on Quiltmaking, Patchwork & Applique!). I borrowed it from the local library, and couldn't put it down. It answered so many questions. Apparently it is also linked to low thyroid.

    It contained the best description of FMS that I have come across. "Think of your worst bout of flu, multiply it by 20, then imagine feeling like that all the time!" To me that is a good day. Multiply it by 50 for a bad day, and 80+ for a *very* bad day. When the family asks how I'm feeling, and I tell the on a scale of 1-80+ they get the general idea.

    I've been taking 1 Dolased at night to help me sleep, but the last few days, even though they have been 20 days, all I want to do is sleep. Yesterday I got up at 9.30,opened the blinds then went back to bed. Woke at 1pm. Today I woke up at 11 am. Well over 12 hours sleep each day. A few years ago I was given 25mg Endep, but that knocked me out for 24 hours - literally! 12.5mg knocked me out for 12-18 hours, and 6.25 mg for 9-12 hours. Didn't matter what the dosage was, I got around like a zombie for the next 4-5 hours when I got up. Definitely wasn't safe to drive. If I planned on going into town I had to stop taking it 2 nights before I went. Decided that the cure was worse than the complaint, and ditched them.

    The Dr that diagnosed me told me that fibro does NOT like cold, damp weather, or humidity. Well, it gets cold here overnight in winter (down to as low as minus 10C/14F), but there is no humidity at all. No where near the heat in Melbourne - 3000 km south - from where I moved 8 years ago, and I'm coping a lot better. It has only got to 40C/104F twice in the last 8 years. The year I moved here from Melbourne it was 28C/82F on Xmas Day,and Melbourne had 47C/117F. Best thing I ever did moving north.

    Just as well I live by myself, I doubt if I could manage a family some weeks.

  24. #24
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    Have you been able to continue working?

  25. #25
    Super Member sahm4605's Avatar
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    Like many others have said keep a food and pain diary for a month and then compare the two. the days that are really bad go to the food diary and see if there are any connections. Stay away from those. I know a few people that have Fibro. My mom my grandma and both my uncles are among them. I think that I have it starting also.
    My mom finds that a water bed turned up nice and high helps a lot for her to sleep. there is something about not getting enough of rem sleep or something because the body is missing something to tell the body to paralys(sp) itself.
    There are a couple of people who have gone to a raw food diet with no meat or fish that have found much relief from the pain. The best thing is to go to a natural food store and get a few books and start to read read read up on this. Unfortunately the diagnosis of Fibro is kinda a catch all for wide spread pain that the docs are clueless about. you are your own best advocate in the medical world. read all you can and stay away from all things processed and it should help some.
    I being in the beginning stages of it do find that when I work out it helps and staying away from processed foods and sugar help a ton. which stinks because I am a sugarholic. hope that this helps.

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