Fibromyalgia - What is the root cause?

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gavians
gavians Posts: 72 Member
This discussion is to share stories of any ideas on what caused our Fibromyalgia. Everyone is different and there seems to be various reasons what triggers it. Hopefully, if we share our stories, maybe we find a correlation between our experiences and discover something we hadn't realized in the paste.

For me..... my theories on potential root causes of MY fibromyalgia.
+ Huge weight loss (75 lbs) and large change in my activity level that my body wasn't used to.
+ Too much diet coke
+ The use of CREATINE during weight lifting or a few other weight training suppliements
+ Complications from diabetes
+ Complications from medication -- medications I was on prior to FM onset: Lipitor, Glucophage
+ Potential from some bacterial illness but no illness of significance.

I don't know if any or all of these caused it, but they are my theories. Does anybody else have similar or other theories or thoughts on mine?
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  • nancyinfernley
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    i have no idea what causes it. but wouldn't be surprised at any of this was caused by all the crap in our diet. from things like BHT/BHA and other formaldehyde derivatives (yes embalming fluid). the cheaper the food it seems the more chemicals are pumped into them from big corporations trying to sell us their crap. i have been sick with these symptoms ALL my life. it's just now that they found a name for it. i have lymphedema (LE for short), asthma (brought on by living in a building with asbestos on ceiling and floors for 8yrs), IBS, raynauds disease, fibromyalgia, year round allergies, varicose veins, depression and a cancer (pre-cancer cells specifically). i cannot work because of this. living in the san francisco bay area and living a mile away from SFO (having them fly over our house for my first 30 or 40yrs just about anywhere i lived in the bay, certainly must have polluted me but good) not to mention steel mills of my childhood and chemical factories everywhere. i think that our environment does this to us.

    my son is mentally and developmentally disabled, he also has a touch of autism. my daughter is bi-polar, has social anxiety disorder and has aspergers syndrome. my daughter also has fibromyalgia and possibly chronic fatigue syndrome. my sons' first 8yrs were as an extremely destructive child that would have angry outbursts that led to violence. i discovered the feingold diet (http://www.feingold.org/ back in the mid 80's. i took all additives that i could out of his diet. artificial food colorings, artificial flavors, nutrasweet (and later splenda), preservatives and any other crap i could find. this wasn't easy or cheap. but i managed. within two weeks he could speak intelligible sentences, not break toys, had an attention span of more than 2mins., slept through the night, could communicate normally for his brain development, same with a lot of his learning disabilities.

    i think it saved his life. social services aka CPS was pressuring me to have him committed in a home for boy that had been abused, neglected and molested. after that they backed off (my getting legal advice certainly helped also). so having seen how it works that is my theory. oh i forgot i was on ritalin for a while in my youth. they wanted to put my son on it i refused. my grandson is on this diet also. i believe ALL children under 12yrs old should be on as pure a diet as parents can give them.
  • gavians
    gavians Posts: 72 Member
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    nancyinfernle- My younger son who is almost 6 has similar problems. He is a candidate for drugs but we refused as well. Right now he is going through a neuro-feedback program, http://nhahealth.com/. He has been doing it for about 4 weeks now and he does seem better lately. On the first visit, they attached tons of sensors to this head to monitor a baseline brain activity and compare to a statistical average population for his age. It is very interesting -- they basically watch TV and play games why several sensors are attached to his head. When there is very active brain activity in the areas that lead to his poor behavoir, it impacts the quality of the image and sound of the movie and/or impacts how the video game reacts. Eventually, through like a Pavlov effect, he naturally starts providing better control over these ever active portions of his brain. It isn't cheap and a bit sci-fi but it can't hurt him at all only help so we are giving it a shot.
  • Kwick2010
    Kwick2010 Posts: 20 Member
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    No one knows the root cause of Fibromyalgia. It's not a one size fits all condition. Everyone is different, and so many different things are thought to be triggers. Some of the many documented triggers, some of which my own doctor thinks may have ultimately led to my being diagnosed, are used in combination to supposedly cause this condition.

    Examples:

    - Hormone shift from pregnancy
    - Accident or major injury with unresolved pain
    - Major infection or MSRA
    - Weight gain & associated weight related conditions
    - Thyroid condition, especially hypothyroidism

    There are many more I could list, but these seem to be the most common. Me personally, I had 4 of the 5 listed, (not all at once) and my doctor believes that the combination of those events are what ultimately led to my fibromyalgia. Again, everyone is different. That is why some treatments and medications work for some while for others it may even seem to make symptoms worse. You have to figure out what works for you.
  • trishrn2009
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    I started having pain issues right after I had my son. I ended up with Toxemia and had an emergency C-section. It took the doctor's 12 years to finally diagnose me.
  • vittix
    vittix Posts: 84 Member
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    I had ready bad mono when i was 21 the Epstein Barr virus has been linked w/ fibro. I had a cyst removed @ 24 and it started from there. Both of my sisters have it too
  • nancyinfernley
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    Examples:

    - Hormone shift from pregnancy

    hormone shifts from pregnancy really do effect ppl. it changed my daughter from mild 1 pill before getting pregnant to 3pills and major psychosis during and after the birth of my grandson and no reversal as time went on back to the person she was before. so i wouldn't be surprised.
  • nancyinfernley
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    i believe both my daughter and myself were born with it. but as children we were able to be somewhat normal so nobody noticed. they just thought we were sickly and/or not atheletically inclined. when really we just couldn't do what other ppl did. by the time we were even thought of as being diagnosed it just seemed like it was a new thing. but looking back over the decades i see that we had the symptoms all our lives in one form or another. it might also be hereditary.
  • nancyinfernley
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    nancyinfernley- My younger son who is almost 6 has similar problems. He is a candidate for drugs but we refused as well. Right now he is going through a neuro-feedback program, http://nhahealth.com/. He has been doing it for about 4 weeks now and he does seem better lately. On the first visit, they attached tons of sensors to this head to monitor a baseline brain activity and compare to a statistical average population for his age. It is very interesting -- they basically watch TV and play games why several sensors are attached to his head. When there is very active brain activity in the areas that lead to his poor behavoir, it impacts the quality of the image and sound of the movie and/or impacts how the video game reacts. Eventually, through like a Pavlov effect, he naturally starts providing better control over these ever active portions of his brain. It isn't cheap and a bit sci-fi but it can't hurt him at all only help so we are giving it a shot.

    sounds interesting. i should check this out for my grandson. he is on the feingold diet himself, but he still acts out. sometimes violently. especially with my daughter who has shown signs of fibro and is showing signs of chronic fatigue syndrome also. i'm hoping it's ADHD and NOT bi-polar having been passed down through her.
  • becoming_a_new_me
    becoming_a_new_me Posts: 1,860 Member
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    I 100% believe that Fibro is heriditary as a predisposition then triggered by trauma to the body such as pregnancy, yo-yo diets, bodily trauma through abuse or a car accident and even excess stress. I have fibro, but so do my two sisters, all of our daughters, my mother, and her mother. I also have several cousins with the condition. All of us have experienced one of these triggering conditions prior to the pain beginning. I do finally have mine under control through the use of natural supplements to address key nutritional deficiencies. I think that good nutrition and low-impact exercise can really help keep it under control.
  • gavians
    gavians Posts: 72 Member
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    @iddreams -
    My story is consistent with your opinion. My sister has MS but I believe that she also has FM that is just overshadowed by the MS -- all of her pain issues just get associated with MS of which she was officially diagnosed and not FM which she was never diagnosed. My pain started after a significant weight loss and associated marked increase exercise and activity.

    What type of natural supplements do you take?
  • becoming_a_new_me
    becoming_a_new_me Posts: 1,860 Member
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    @gavians - I use some products from The Aim Companies. They sell natural whole food supplements as well as organic, non-GMO supplements. For the fibro (and depression that goes with it), I use the products Leaf Greens (concentrated leafy green veggie juice powder), Frame Essentials (MSM and glucosamine), CellSparc 360 (CoQ10 with green tea extract and others), AIMega (Omegas 3-6-9), and Compsure (herbal calming supplement). I use some others for general health too, but am off all my fibro, depression, and anxiety meds and am nearly pain free.
  • JoyfullMovement
    JoyfullMovement Posts: 107 Member
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    Mine started after a hysterectomy and then an increase in physical activity. I always thought it was the hormonal shift from the surgery but do remember symptoms starting before that. My daughter suffered with it from ages 7-9 terribly. It wasn't diagnosed, but I know her problems included fibro. She was diagnosed with hypermobility syndrom.. I realized I had that too at her age which like her improved with another hormone shift, puberty. There is a connection between the hypermobility syndrom and fibro. Many of the children with fibro have HMS also. If any of you or the children in your lives have fibro, are very flexible in some joints, have no answers, do a search on HMS. The doctors mostly miss it and the physical therapist are the ones to catch it. Oh, my daughter still has her issues, just not as severe as those years that stole her childhood. It is one thing to go through yourself but to watch your child suffer and not be able to do anything is very devastating.
    Great question. I guess we all wonder what started or caused us to travel this road.
  • crazysquaw51
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    I don't know what truly causes it but I did not get it till after I had major surgery and years of doctors telling me it was everything else till I found a Rheum. doc who told me in 5 min that is was FM. I had never heard of it before and that was over 20 years ago and I still suffer. NOw I have no insurance, so no pain meds etc. I take ibuprofen over the counter and vitamins, some days are worse then others and some are good, I gained a million pounds, lost it and gained it back,. so here I am again trying to lose, worse part of excercise is my right leg behind the knew, they say its the ham string, even with driving causes problems so sometimes just can't stand to excercise. I also believe I really have had this since childhood, use to have what they called growing pains and they were so bad at times I had to stay in bed, then after my son was born I had migrains in back of neck and head, told by doctors afer all the test, etc, stress, what a crap, now the fm is in my right shoulder all the time that I can't stand a bra for long time, cause pain in back of neck and head , so migraine again. life is so much fun istn't it, but I thank the good lord that I wake up everyday with all my limbs, eyesite and hearing, so if this is what I have to endure guess I just have to.
  • RILEYRED
    RILEYRED Posts: 647 Member
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    OMG, it never crossed my mind till I just read your post,crazysquaw, but growing up I had terrible joint pain, and the doctor always told my mom it was growing pain and pain because I was a chubby kid,etc.!!!!! there was also a time when I was 6 that I couldn't walk for about 6 months,it came and went and I don't remember what the diagnosis was,but I did have Rheumatic Fever, which left me with bad heart valves. Wow, you certainly gave me alot to think about, yes, life is just toooo much fun!!!!! :(
  • hsmithway
    hsmithway Posts: 191
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    In my case, I also have Ehlers-Danlos syndrome, which I think predisposes me to have problems with pain and fatigue. Ehlers-Danlos is hereditary, so several of my family members have it, but only my aunt and I have Fibro along with it.

    Like one of the previous posters mentioned, I also had a really long miserable case of mono, and that's when I first started to really have problems with fatigue and pain, but for many years it would come and go in flares where I was reasonably normal in between. They gradually got worse and more frequent until there weren't any "normal" days left.
  • JoyfullMovement
    JoyfullMovement Posts: 107 Member
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    The HMS is similar to the Ehlers-Danlos as I understand, similar or often mentioned as a lesser form of the ED. With the HMS, extreme pain when young is often put off to growing pains as was told to both myself and my daughter. HMS is also hereditary. When a child is diagnosed, a parent often realizes they also had or have the same symptoms.
  • crazysquaw51
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    I had total blood transfusion the day I was born, was an RH Baby and I think this started all my problems. Was a sickly child so I was told alot, remember gone to the clinic everymonth till I was in the 7th grade, reall pain in the neck. I was very small and skinny, then got married had my son 2 years later and started with migraines, etc till hysterocomy (cna't spell today) then migraines went away and I started gaining weight, never ever thought back then I be over weight ever. now so hard to lose
  • crazysquaw51
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    What is HMS, sorry have no idea.?
  • crazysquaw51
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    Hi, I'm from Maryland, where are you from or live?:happy:
  • hsmithway
    hsmithway Posts: 191
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    The HMS is similar to the Ehlers-Danlos as I understand, similar or often mentioned as a lesser form of the ED. With the HMS, extreme pain when young is often put off to growing pains as was told to both myself and my daughter. HMS is also hereditary. When a child is diagnosed, a parent often realizes they also had or have the same symptoms.

    Yes, that's my understanding as well. I was actually the first diagnosed in my family, but after that things started to make a lot more sense for my mother, aunt, grandmother, and they even remember my great grandmother having some of the same issues. On the plus side, my grandmother is probably the most flexible 80+ year old person I know, so I have that to look forward to, at least.