Fibromyalgia, Fodmaps and Dieting

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  • Hi, I've had fibro now for at least 16 years and yes the pain is unbeliveble but my Doctor had been after me for about 4 yrs. now. I started swimming 16 months ago and i still have incredible pain every day but i go swimming 5 to six days a week and love it. I have a swim buddy i go with and b etween swimming and doing this program i have lost 35 pounds but have gain 2 over the holidays and back to loosing again. i have 35 more pounds i would like to loose and in time i will be there. You can do it too. I have had lots of surgeries, knee re4placement and now will be looking to back surgery sometime soon on L 5-4. I will beat that also and yes I'm diabled also but have lots of other medical issues such as degenerative disk disease. Wishing everyone well. Just keep on moving please.
  • I have Fibromyalgia, Rheumatoid Arthritis, Chronic Fatigue and IBS.

    IDK about others but I have gone against doctors wishes and I work out far more intensely & frequently than they would like me to but now I have reduced my pain, increased flexibility and strength. I am not going to lie the first month or so of exercising after I hadn't in years made me wonder how I was ever going to exercise regularly but now I feel a lot better and do some sort of physical activity daily. I have a bad habit of pretending I am "normal" and living my life like others would. I am aware of my conditions and the consequences and all that, I just refuse to have a reduced quality of life. I may modify what I do versus a "healthy" person but I refuse to think that I can't do it all together. Where there is a will there is a way :)

    Hi all -- just finding this today . . . I don't go on the boards a lot but this discussion interests tremendously. I was diagnosed with Fibro in 2001. it cost me a very good career in higher education and changed my life. However, 12 years later my life is much improved. The first few years were really tough as I navigated meds, different doctors, and learned how to listen to my body. Like the poster I have quoted I try to pretend I am normal and often leave myself exhausted and really ticked off that I can't do what I want to. About a year ago I really decided to add exercise to my life again -- I was about 50 lbs overweight and tired of it! It hurt . . . for weeks. But now I can do a lot. I pace myself -- some weeks are great especially when I am feeding my body right, avoiding sugar and taking all my supplements. Some weeks (like last week) I just don't have the energy and I back off a lot until I regain some strength. A great doctor once told me that most women with fibro get so excited when they wake up feeling well that they use up all the energy they have generated doing WAY too much and then crash. He taught me to trust my body and to have balance.

    I now work part-time teaching on a college campus and doing research from home. I also have two teens, two dogs and run everyone's lives. I clean my own house, do most of my own gardening and am pretty active. It is a long process but support makes a huge difference. I would welcome some new friends.
  • Question?? Does anyone take magnesium supplements for FM? My mom bought me a bottle today. She has been told it is good for our condition. I took my first pill today hoping to make a difference on how I feel. I have been feeling rough these past couple days. The pain level is extremely high. I don't know if its the weather we are having here in PA or what. I've been watching my diet as far as the artifical sweetners. Baby steps. :drinker: Wishing everyone a feel good day.

    YES! I take magnesium morning and night and the improvement has been great. Really takes care of the general muscle pain especially the achy legs that I used to have every night. Combined with a ton of water that nighttime leg issue is gone. . .

    Weather is a huge issue for fibro sufferers - changes in barometer that are extreme throw many of us into a flare and they are impossible to plan for. The weather changed 20 degrees this weekend and I woke up hurting. As soon as a consistent temperature returned I felt better.

    One more thing -- artificial sweeteners are death to people with fibro. Give them up -- the calories saved just aren't worth it. I have lots of research pointing to the connection between artificial foods and additives and the symptoms. MSG is awful too -- and it is in everything. Start reading every label and avoid these two -- you will feel better.
  • smeklc
    smeklc Posts: 94 Member
    bump
  • thi3
    thi3 Posts: 13 Member
    Hello beautiful people!

    I have FM, UCTD, and Hashimoto's. I"ve been gluten free for about 6 months and was doing so well until the holidays came. UGH. The day after Christmas I decided to do my elimination diet. It's a doozy to combine foods that are FODMOP, anti-inflammation and Paleo to see what's going to work best. If it's conflicting, I go with inflammation first as that is my largest problem.
    I know it can be terribly difficult to deal with pain. I promise, even if you only do 10 minutes of stretching or walk 5 minutes and add in a minute the next day, you will get stronger and feel better.
    Two years ago I ran a half marathon. Last year I would go to two hours of exercise classes a night. Then I had a breast biopsy that put my body into a gigantic flare. Three months ago I started walking again and going back to yoga. Am I anywhere near the fitness level I was? Nope. I keep going, feeling better each time I'm done and knowing I'm slowly getting stronger. This is such a wacky journey.
  • I have noticed that most of you have other diseases besides FM. I have been diagnosed with FM only. Is this uncommon? I'm not complaining but I'm wondering why I don't have something else to go in hand with it.

    Also what if any meds are you taking for FM? I am taking Lyrica plus Topamax for the headaches. I was on Savella and Cymbalta but I thought it was too many meds for me. The side effects were too much. The Topamax works well for the headaches. Lyrica helps to a certain extent for the pain. I'm also on Welbutrin for the depression. I'm not sure that is helping at all.

    I'm looking forward to your thoughts and story.
  • shellux
    shellux Posts: 164 Member
    I have FM alone too, luckily, I think after hearing from other people. It is starting to become a pattern now. I am lucky in the the sense that I only have pain flare ups every 2 years between Dec and April. The rest of the time it is manageable problems like nasal drip, migraines, tiredness, fog that kind of thing. I actually thought I was a bit of a phony until this flare up. My last flare up was Easter 2011 which I was medicated with Solpadol (Codeine/Paracetamol), Amitriptiline and Naprosyn. Then diagnosed with depression, treated with Sertraline. Finally came off the Sertraline last year and was feeling good so started working out about 6 months ago until now, current flare up. Also started getting migraines, once I came off of the Sertraline with low blood pressure. This pattern seems to have happened twice now over the last few years.

    Whether its the fact I have been getting up early trying to work out (messing up my sleep pattern), change in the weather, coming back to work after christmas off I have no idea. Doc has diagnosed the same medication I was on before but am determined not to go down the depression path this time.

    My Grandad had Fibrosis and my sister also has FM but completely different symptons to me (apart from sleeping and common symptons), she also has TMJ.

    FM is a very humiliating and isolating condition and it is great to know how other people cope with it.

    Shelly
  • Shelly I'v heard that it is genitic but right now I'm the only one in family. Asthma run in the females in my family.

    The brain fog is another symptom I'm having trouble with. It's overwhelming also. My memory was a big asset to me. It's one of the reasons I quit working.

    I also seem to drop things more often. I don't know if this is a side effect to one of my meds or part of the disease.

    I'm sorry your flare up is more often lately. I hope your meds will help ease your symptoms. I haven't heard of the meds you currently take except Sertraline. Wishing you a painfree day. ((soft hugs))

    Dena
  • I too am very clumsy and one of my first signals that I am heading for a flare up is that I start getting clumsier. At the moment I am not on regular meds but now that i work 25-30 hours a week I have started taking painkillers more regularly, and am having physio to keep me going.. But it never ends. I have had fibro for over 20 years and each flare up is progressively worse and takes longer to leave. Am hoping that getting the excess weight off will help but I get sick of telling people that it's not my weight that causes fibro There are many days when I can push the pain aside because I am busy or enjoying myself, but it takes only one thing to bring all your pain back into focus - you get too cold or too hot, lights are too dim or too bright, a tummy ache or something sad on the tv and BANG every pain in your body comes to your attention.
  • Hello everybody

    Wishing everyone a happy day. :-)
  • amyllu
    amyllu Posts: 432 Member
    I too am very clumsy and one of my first signals that I am heading for a flare up is that I start getting clumsier. At the moment I am not on regular meds but now that i work 25-30 hours a week I have started taking painkillers more regularly, and am having physio to keep me going.. But it never ends. I have had fibro for over 20 years and each flare up is progressively worse and takes longer to leave. Am hoping that getting the excess weight off will help but I get sick of telling people that it's not my weight that causes fibro There are many days when I can push the pain aside because I am busy or enjoying myself, but it takes only one thing to bring all your pain back into focus - you get too cold or too hot, lights are too dim or too bright, a tummy ache or something sad on the tv and BANG every pain in your body comes to your attention.

    Some great points there Suzanne!
    Must say I never thought that the "clumsy" thing was a sign but I have noticed that on some days I continually seem to be knocking things over so I take extra precautions when I am making a cuppa to move things well out of the way...such as when I am adding the milk to my cup I move the cup as far back as poss so if I do knock it over it won't spill all over me...And there's me thinking it was just old age...:laugh:

    And a happy day to you too!

    Btw.. The documentary that I mentioned about aspartame was shown some many months ago on something like a Horizon programme when this was first on the market.
  • I too am very clumsy and one of my first signals that I am heading for a flare up is that I start getting clumsier. At the moment I am not on regular meds but now that i work 25-30 hours a week I have started taking painkillers more regularly, and am having physio to keep me going.. But it never ends. I have had fibro for over 20 years and each flare up is progressively worse and takes longer to leave. Am hoping that getting the excess weight off will help but I get sick of telling people that it's not my weight that causes fibro There are many days when I can push the pain aside because I am busy or enjoying myself, but it takes only one thing to bring all your pain back into focus - you get too cold or too hot, lights are too dim or too bright, a tummy ache or something sad on the tv and BANG every pain in your body comes to your attention.

    Suzanne its def not the weight for FM because I was not overweight when I got the disease and there are others on here that are thinner than you and I that have flare ups. Don't let them get to you. Wishing you well. :drinker:
  • I was diagnosed with FM about 6 weeks ago. I started on Lyrica and worked up to 150mg twice a day. In this 6 week period I gained almost 10 pounds! I went back to the doctor today and they are weaning me off of Lyrica and having me try the Cymbalta.
    I don't take anything else. I was initially diagnosed with Burstis many years ago and would get steriod injections for the pain - but the injections quit working and as a result I was referred to a Rheumatologist.
  • shellux
    shellux Posts: 164 Member
    That has to be the most frustrating part of FM, the time it takes to diagnose. It took 10 years for me, prior to this I had never heard of it.
  • smeklc
    smeklc Posts: 94 Member
    I too am very clumsy and one of my first signals that I am heading for a flare up is that I start getting clumsier. At the moment I am not on regular meds but now that i work 25-30 hours a week I have started taking painkillers more regularly, and am having physio to keep me going.. But it never ends. I have had fibro for over 20 years and each flare up is progressively worse and takes longer to leave. Am hoping that getting the excess weight off will help but I get sick of telling people that it's not my weight that causes fibro There are many days when I can push the pain aside because I am busy or enjoying myself, but it takes only one thing to bring all your pain back into focus - you get too cold or too hot, lights are too dim or too bright, a tummy ache or something sad on the tv and BANG every pain in your body comes to your attention.

    Suzanne its def not the weight for FM because I was not overweight when I got the disease and there are others on here that are thinner than you and I that have flare ups. Don't let them get to you. Wishing you well. :drinker:


    For me, weight is partly a problem, but likely as indirect. When I lost weight in 2011, I was able to move more and then with that the stiffness lessened. Consequently, I had fewer issues and able to complete more each day. There are fewer days where I am down and out mostly.

    I have been lucky, I still can work and do things, I just prioritze what needs done most. There have been days where I worked and then home and done. The cold and over doing it trigger my FM mostly. So atm, not enjoying the weather.
  • WinBattle
    WinBattle Posts: 12 Member
    I have Fibro and RA. I miss all the things I could do. I miss the energy I once had; once I was like a little Energizer bunny. Now, I am trying to learn to live healthier and to remember all the things I can stll do. I've learned through my flare ups and feeling good in comparison not to overdue it when I felt better because I've paid the price for doing that more times than I'd like to admit. I'm trying to lose weight and get healthier and take better care of myself. Like many people, family always came first and I often wasn't even on my own list. I'm working on this and I think it's a lifelong learning process. I am grateful to have a supportive husband but I've really had to learn how to accept his help when I need it. Anger, depression, etc. just part of the disease but it too can be managed and for that I am grateful. Learning to be grateful for the little things and the important people in my life. I'm 51 yrs old, married, working mother of two and grandmother of 3. I am glad I found you all because it can be hard to explain to people who don't understand the illness that sometimes just getting out of bed is an accomplishment.
  • CherokeeBabe
    CherokeeBabe Posts: 1,704 Member
    I have Fibromyalgia as well, diagnosed in my teens, seems to run in my Dads line of the family. His Mother, Him and now me. Exercise is always my biggest struggle, it seems to take forever to "heal" and I have to push through the pain from simple tasks oftentimes, just cutting the grass during a Flare is exhausting. I don't speak of it much because I don't want to let it limit me. So glad to see some others that are affected by this and still pushing themselves!
  • christinelyn
    christinelyn Posts: 85 Member
    I also have Fibromyalga and meds did not help me. I found out I had to eliminate gluten which helped alot and also for me the nightshade foods and eggs. More or less the Paleo Diet is the best for me. I can tell if I get off track I start hurting all over again.
  • WinBattle
    WinBattle Posts: 12 Member
    I've joined Women with Fibromyalgia group also. I am hopeful the support will help relieve guilt, provide exercise tips, and the community of women trying to do the best they can with the cards they've been dealt.
  • Well I went to see my Rheumatologist yesterday as my right hip is given me problems. He gave me an injection and prescribed me Etodolac 500mg 2x daily. I was curious if anyone else is taking any anti-inflammatory meds? He felt I was taking too much motrin, which is hard on your liver and kidneys. If you are taking these meds, do you feel it is a benefit? He prescribed two weeks worth for a trial period for me. Please let me know your thoughts.

    Thanks,
    Dena :flowerforyou:
  • mgregoireMFP1
    mgregoireMFP1 Posts: 2 Member
    Hi ya'll - so glad to find you - I'm 55, and suffer from IBS and FM. I am just learning about FODMAP - I see that a number of you have inquired about it and there is a good reply here. Would it be helpful to give you some links on this? - I found some good food checklists of what's ok to eat/ not ok. Has anyone had success with this? On Food Network at 9pm on 3/11 they are starting a show called "Food Hospital". That is where I learned about FODMAP. It appears promising. For me it's great to have a roadmap to follow, because as you know, these syndromes can make the mind fuzzy.

    I will share a few things that have worked for me in the past 5 years in dealing with FM.
    I'm in a high stress job, and requires real mental focus. At one point my FM and IBS was so bad, I could barely get out of bed. I did find out my thyroid levels were off, so get that checked. I have had a prescription for Cymbalta which I feel REALLY helps with the pain, and of course the depression. YOGA has saved my life. Don't be intimidated by the people you see that look like they are twisting their body into a circus act. I recommend starting with DVDs by Barbara Benaugh (Amazon), Begginer series and Stress Relief Dvd. Just do what you can, and slowly you will be able to do a little more. She is very good at calmly, soothingly teaching. I play it on a portable DVD player so I could put it on the floor with me and took it everywhere, to the hotel, to the sun deck, to the back yard. Where-ever I could find 15 mins of peace.

    Love and peace to you all.