Fibromyalgia - What is the root cause?

gavians

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?

nancyinfernley

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

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

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

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

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

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

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

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

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

@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

@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

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

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

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

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

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

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

What is HMS, sorry have no idea.?

crazysquaw51

Hi, I'm from Maryland, where are you from or live?:happy:

hsmithway

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.

TrailRunner61

I now know that I've had it since I was 16 so I suppose my reason for having it is from having mono in high school. It didnt get really bad though until after I had a boating accident.

JoyfullMovement

HMS,
FROM A SITE ON LINE:
My examinations have almost always revealed an undiagnosed hypermobility syndrome of the congenital or benign types. Although there are many conditions which have joint hypermobility such as Ehler-Danlos, Marfans, rheumatoid, post-polio and other syndromes; by far the most common is the congenital or benign hypermobility syndrome. These people often note that they are very flexible but they thought it was good.
This doctor goes on to talk about the connection between HMS and Fibro.
I will,post again with the site address. But a google turns up information also.
I mention it because a lot of people with it have never heard of it. The diagnosis is often missed and especially for children in pain and often no one believing them, it can bring some relief to have it identified.

JoyfullMovement

http://www.milwaukeepainclinic.com/fibromyalgiaHypermobilitySyndrome.asp

Here is one doctor's site talking about the connection between HMS and Fibro. I hate to say after a lifetime of being overly flexible, now I am stiff and have issues I never thought possible for me. I think after the hysterectomy, hormone shift started it.

Oh, I live in the mountains of NC.

JoyfullMovement

Here is another good site about HMS. I know this amazing young woman who runs it. http://www.hypermobilityhope.blogspot.com/

gavians

Very interesting discussion. My son had low muscle tone when he was a baby and therefore he was almost two years old before he could walk. He has seem to outgrow it over time. But I definitely will keep an eye on him with this in mind. He is 8 yo now.

JoyfullMovement

A sign of HMS is when a baby doesn't crawl but scoots around on their bottom. Some skip crawling all together and manage like this till they can walk. It is good just to be aware of. It was a blessing when a friend realized what was wrong with my daughter and led us in the right direction for a diagnosis.

hsmithway

Very interesting discussion. My son had low muscle tone when he was a baby and therefore he was almost two years old before he could walk. He has seem to outgrow it over time. But I definitely will keep an eye on him with this in mind. He is 8 yo now.

Apparently my mother was like that as a baby. She didn't even roll over on her own until she was almost a year old. She's had some joint problems over the years, but fortunately doesn't suffer from the kind of chronic pain that my aunt and I do.

The good news is that most men are less flexible than most women, so they tend to be less severely affected by things like EDS and HMS. That's not to say that it can't happen, and it's definitely woth keeping an eye for the signs that it's a problem, but hopefully your son will be healthy and comfortable for many years to come!

Pifflesmom

I was diagnosed with Fibro around this time last year - after determining it wasn't RA (thankfully). I also have PCOS and I think they're all connected somehow...it took me a long time to convince my doctor that I WASN'T being lazy, it's that I just had no energy, barely enough to get up and go to work. My father passed away in 2005 and I fell apart and had to start looking after my crazy mother, until she passed away in 2010. Then I lost my home in a fire (I'm back now) - so it's been a s**tshow the past few years.

I've just started on MFP about 3 weeks now, lost 8 lbs so far, but according to my dietitian, I need to exercise more, which is fine - my brain thinks it's a wonderful idea - however, since I started working out (swimming, treadmill) - my body HURTS ALL OVER - and not in that 'wow, I feel good because my muscles are all stretched out' way - I mean in the 'OMG MY BODY HURTS, MAKE IT STOP' sort of way.

I also had knee debridement surgery done 1.5 years ago and after yesterday's workout, it looks like a basketball. Even after swimming the other day, it was sore.

I don't mean to sound whiny, I'm just frustrated because I really REALLY want to succeed at this - but my body is making it awfully difficult. :sad:

I also live in Northern Alberta and last week it was -50 with a windchill and this week it's 2 above, so the weather fluctuations are EXTRA SUPER HELPFUL (sarcasm). :grumble:

How come when you're 15, your body is willing, but your mind is weak and when you hit your mid 40's - it's the other way around? Doesn't seem quite fair!

gavians

@Pifflesmom -
The good news is if you continue to fight the pain, you will be more fit and healthy so your stamina or duration before the pain is bad will be longer and longer. Hopefully to where you will be able to better handle the exercise without pain. If you did the opposite, you will be able to do less and less until you can do nothing without pain. So there is hope! Keep up the good fight! In the future, you will thanks the "younger" you! Woudln't the world be an amazing place if we could live as Benjamin Button (living in reverse starting as an old man)?

JoyfullMovement

Hi Pifflesmom,
I didn't think about the PCOS. I had years of struggle with endometriosis and PCOS. That is why I had the hysterectomy. Hang in there! I know it is so frustrating to want to be healthy when your Fibro makes it hard to function. I just would suggest trying different lifestyle changes to see if something will help. For now I am doing a bit better and even exercising pretty hard. I have been eating very little gluten and sugar. I think that is what is making the difference for me. Something is out there to help you also! Good Luck!