So I'm interested what is the cause for fibromyalgia to you?
Fibromyalgia Cause: So I'm interested... - Fibromyalgia Acti...
Fibromyalgia Cause
59 Replies
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Hazel_AngelstarAdministratorFMA UK Staff
Mine was childbirth 28 1/2 years ago
in reply to Hazel_Angelstar
Really
I put my down to trauma.
Been on my mind alot from talking to family and a friend's son who said to me how can you settle for being miserable and not know the root of the problem. Like could it be from a tick Lyme disease causing all this or from a mosquito carrying disease or a horse fly. My older brother believe it's from chemical from them spraying chemicals around town for mosquitoes as kids and we were never told to stay indoors. Chemicals from insect sprays on every crop of vegetables and fruit we eat daily. All the chemicals used on animals to fatten for earlier slaughter. It's may sound crazy but I don't think so at all and makes perfect sense. Family or 5 kids, dad died when I was 3 cancer, little sister died at 44 cancer, older brother arthritis bad, older sister MS, me Fibromyalgia or chronic pains all over plus, little brother arthritis, mom died at 81 Alzheimer's. Well that is everyone of us has something wrong. So I like testing to see if caused by chemicals or disease from insects etc. Not just you have fibromyalgia fine what works for you. I feel this because medicine for fibromyalgia does nothing for me so I must think it has to be something causing besides trama etc. That's just seems to far fetched it you really really think about. So interested if anyone feels as I do. Or do you feel it is from trama etc. Or could the use of antidepressants or other medications for long periods of time the cause. So many thoughts I have.
KimiJay in reply to
'They' say PTSD and I believe them completely. - One thing 'they' have got right. I would say you had a whole bucketful of stuff to deal with as a child from what you have written.
For me I reckon it was trauma and chronic migraines.
I got mine from a virus I picked up when on holiday in the Canary Island about 12 years go
That makes two of us who had a terrible holiday in the Canary Islands, yours worse than mine though clearly.
To be honest I haven't a clue, but, when I look back at my life I believe I have had this since I was a childTherefore, perhaps inherited?
Interesting post
Well mine could of been caused by death of my dear Mum but when it was suggested I wouldn’t have it as I couldn’t blame that on her passing.It was an insult to my sisters too as they are both well.But I seemed to have collected auto immune diseases since etc and am not a well person but I am stubborn and try to persevere enjoying life.I say do what you can while you can as you never know when you won’t be able to.Take care
Mine started when I went to boarding school as a child. My brother and sister went too. It was catastrophic for me and I was damaged permanently by my experience, my sister and brother were fine though, they didn't like it but it didnt break them. I've managed to collect 4 chronic, incurable, pain conditions with anxiety and social phobia, life long insomnia. My siblings have no conditions at all, we all respond to trauma differently I guess.
They say it is from trauma but there is a new study that says fibromyalgia is not caused by problems with the brain it is now caused by an autoimmune disease. Nobody knows for sure and if doctors don’t know then we won’t know . It’s best to try and enjoy your life as best you can as you never know what’s around the corner . Take care and stay safe xx
that's not actually what the study or the researchers said. They saw what they think are autoimmune properties and they used a lot of probably' s and may's in their language. Lot of distance to go in replication and validation of this research.
One research item does nor change scientific opinion. Even the research from Barry Marshall on H. pylori required validation and replication and that is a good example of a single piece of research having a change in scientific opinion.
Hi I didn’t say they were right I said one says one thing and one says another so the lady won’t be able to find the cause if the professionals can’t and to try and live her life instead of trying to find the cause of her fibromyalgia
I agree with you that it is very complex and there is a disparity in opinion within academia as well as within clinicians and that's before it gets to patients.
Hello GrandmaJam. I am absolutely certain my fibromyalgia is caused by a sulfite/sulfate intolerance.
Because it is a chemical preservative and shelf life enhancer - it is sprayed on so many goods. The worst culprits are wine, prawns, ready meals and frozen potato goods. Sulfates are in medicine, toiletries, dental injections and hair dye. As you can see - it is very difficult to avoid the stuff.
When I cook everything I eat from scratch and follow a very careful ‘caveman’ diet - I do feel a lot better and the fibromyalgia symptoms are less. But when I eat out at a restaurant, or have a meal with family or friends, oh boy do I get problems. All the old fibromyalgia symptoms return with a vengeance.
In fact - in my experience - they are actually worse than ever.
So basically I do feel a lot better - but still a long way from well.
There is a product called Molybdenum which does help. It doesn’t stop the reaction to the sulfite/sulfate chemical - but does help the body to recover more quickly.
Hope some of this info is helpful to you.
Best wishes xxx
in reply to saluhouse
Yes it is, you seem to think like I am of this illness that it's got something to do with new stuff I posted on here. I'm not crazy neither. Ok I'm crazy but a good crazy 😂
saluhouse in reply to
Hello GrandmaJam. No, neither of us are crazy. Just sick and trying to work out why.
I do understand that citing a sulfite/sulfate intolerance as the root cause of my fibromyalgia, does open me up to suggestions I am a neurotic hypochondriac (has been suggested in the past). But just suppose I am right.
I know from my lifelong poor health that it can attack any part of the body and brain. In my case it is predominately bowel/bladder and digestion. Plus sleep disturbance and exhaustion. With a bit of joint pain thrown in.
As I understand it, fibromyalgia is diagnosed by eliminating other conditions. If nothing shows up - you get the fibro label. But there is no test for sulfite/sulfate intolerance. So maybe lots of us have been put into the fibro camp who shouldn’t be there.
If there was a reliable sulfite/sulfate test - we would have been given a different diagnosis. And maybe different treatment.
Just a thought.
Regards xxx
in reply to saluhouse
Absolutely!
ChrissyRuss in reply to
Don't give credence to suggestions like that. Just because the medical profession hasn't got a handle on Fibromyalgia, we don't have to sit back and be insulted! I just tell them "unless you live my life or walk that mile in my shoes & then back up your opinion with evidence, you don't have a clue! Who knows the extent of our condition? Tonight I found out why I drop stuff. Who knew Fibro. affected your hands like it does? Not me? If we are learning all the time then so does the health profession need to? !!
Mine developed after falling 35 feet from a treetop to the ground below on my back. EJ
in reply to honeybug
Oh my that's not good. Very scary.
alch.... I did something similar as a child and broke my leg and then crawled for about 30 mins to get to the side of the road for the ambulance. Leg in a cast for about 6 weeks and a memorable experience in hospital at which I still hold a grudge for not getting my desert 
And to add to this within a day of getting the cast off and going on holiday with friends of the family I broke it once more and was warned that if I did it again then I would have a permanent limp!!!
Do not think it had anything to do with my fibro and still have no root cause for it appearing 30 years later.
OMGOODNESS des 🤗
Sooooo sorry you went through that. I hope no residual effects from 2 breaks.
I had so many traumas since birth….many newly discovered that I know trauma caused mine. My near fatal closed head injury age 7 has caused a lot of adult age onset problems.
I fell ice skating and just after I opened my eyes a neighbor boy slammed into my head with the metal runner blade of his sled. Was unconscious a long time. Only remember sketchy parts after going home from hospital. Donned a baseball size knot over my left eye and rainbow 🌈 colored bruises for months. Needed eyeglasses after that too.
A definite ouch story.
EJ 😱
in reply to honeybug
Ouch ouch.
mine was just the joy of youth and stupid active boy things. A swing or a tree was my normal habitat. Overtaking a car going down a hill (on a bike) in Largs (people will know which one if they are from there) was another misadventure or the being hit by a brick on the back of the head, or the close conversation with a beehive.........
many childhood things but not sure any had lasting effects apart from the generally positive outlook 
Wow des we had similar rambunctious personalities. I was the biggest tomboy. Fearless stupidity; trying to stand on the seat of my bicycle while in motion on a bumpy dirt road…an English racing bike. Came down with a crash my handbrake driving through the tender flesh in the double chin area. My knee had lost a huge flap of skin and was stuffed with pebbles dirt and germs. Never attempted circus stunts again. 😩😭
I’m covered in scars from childhood challenges I took.
I lived and definitely learned.
🤪
You just reminding of non childhood one when I was 17 and the day before I got my photo taken for University. I crashed into a parked car on my bike going uphill. Front teeth broken but also through top lip and associated cuts and bruises.
Went for a closed mouth and curled lip in the photo next day
Oh poor you des. 🤗You have a good story to tell to all who view that pic.
Oh I hurt to imagine your experience. Oh ouch!!!
Much delayed sympathy and hugs for that one.
Hope life has treated you much better since then.
🤗♥️🥰🙏🕊🌿🌸🦋
I remember it being traumatic and embarrassing at the time but it was indeed a story
Oh I forgot about embarrassment; I’d been so red if it were me. I once tried to ride a mini motorcycle in a field behind my parents house. Hit a bump dumping me off the seat still holding on to the gas handgrip. I bet it was hilarious to see me being dragged behind that thing.
I got a severe throat infection because it was freezing outside then.
Cured my desire to ever ride any motorcycle again!!!!🤪
in reply to desquinn
Wow how aweful. Yes lots of accidents as kids. Crazy we survived.
My rheumatologist and GP both think mine has been caused by having rheumatoid arthritis - that the sustained pain led to the fibromyalgia.
Hi, mine was brought on by PTSD caused by by ex husband. My sister and mum also had fibromyalgia so it seems it does run in families.
I had repetitive strain injury from 10-12hrs daily computing whilst studying 20+ years ago. It got really bad (neck, back, arms). That took several years to get on top of (I continued to study at a reduced level, but my physio advised me to push on through - when in reality I should have just stopped). The fibro developed as a result of the long term chronic pain. I'm not sure when it went from repetitive strain to fibro, but I developed sensitivities to everything over a number of years.
There are similarities between rsi and fibro in my experience, such as being sore after doing too much (in reality not doing much), muscle weakness, burning and crawling skin pains, sleeplessness due to pain, headaches / migraines, lack of stamina on physical tasks and taking days or weeks to recover from overdoing it, plus I got Raynaud's symptoms, other weird nerve symptoms and then of course all the associated stress with being in pain and unable to do 'normal' things. The other similarity between rsi and fibro is the belief by some that 'its all in your head' and of course you look well on the outside so people often don't understand there is a problem.
Prior to all this I never gave activities a second thought, I was able.
Thank You all for sharing.
I think mine is just another autoimmune condition that’s come along to join the others I already have! I believe long term stress maybe a factor in my case too.
Good luck with tracking down the actual cause! I don’t think doctors are very interested in even treating us? I’ve only been prescribed a low dose antidepressant, and just rely on ordinary pain medication available from the chemists.
The best thing to help me has been yoga.
in reply to MariLiz
I will keep searching for sure. They are not or that they should all work for you. No more pills for this old lady. 😊
Hi Hidden. I was always very fit and healthy. About 20 years ago I had a very bad tonsillitis and infection, and from that day on I have never been well. After years of testing I was told I have fibromyalgia, and autoimmune thyriod problems. Take care.
Hi GJ. Have been reading some of the interesting things that came up from your query. Mine was from years of stress and worry about my family plus two years of continuous head slapping and brain shaking, and being told I was stupid, stupid, stupid by my very sick and nasty new teacher from the age of nine. I am sure that the judo I learned as a teenager in order to regain my own power contributed greatly to back, pelvis and hip problems and the migraines that were a family heritage anyway, plus viruses that made me weak and pass out occasionally. Later in life, after my third child at 41, I was getting back to work part time, but then I think the pill, HRT and flue vaccine my doctor's office kindly offered me and which I took because they made me feel so cared for, were the final straw. Body said No! - Hope you find something that works for you. I tried the amitryptaline once and gave it a good long go, but it just made me sleepy. So yes, I go along with you all the way. No more pills for this old lady either unless they are herbal. (I have in excess of thirty different herbal teas). - I'm afraid I also didn't trust the vaccine because of all the lying statistics. So, being so used to being in virtual retreat at home for over twelve years anyway, spent much of the two years inside my driveway, but, got to meet people walking past from our locality that I had never met before. - Was able to order just about everything online give or take a great deal of frustration. - I have been so lucky it worked out for me like that and that retirement meant I was financially supported by my hubs pension too. - I feel so sad for every fibro warrior who has been struggling to eat, keep a roof over their heads and that of their children in addition to their own ill health and government meanness. - These FWs are a fantastic kind of people and if one thinks in terms of inner growth, well, ours is huge compared to those people who dismiss fibro suffering as unreal. Lol!!! Keep going!
Mine was childbirth 35 years ago
Coronavirus seems to have been a cause
What's linking all of these experiences is stress (prolonged (A) or a sudden severe shock (B)) stress.... cortisol, some possible sort of pituitary/hypothalamus mediation + some extrinsic physiological stresses (excess hormones in food, chemical fertilizers, nutritional deficiencies, industrial chemicals, the way we live and work, if you had to go without food for long periods growing up) and some resulting fault in the immune system. Maybe the immune system itself or the way it is regulated.
I was told early on by somebody that my GP recommended to me (This person who I have not heard of since, seemed to be giving doctors advice, sometimes doctors from europe as well) that it is a fault with the pituitary gland. The pituitary gland is like a sort of conductor for the entire body. If it goes a bit off then everything is off. Fibro has wide ranging symptoms.
No one's fibro looks quite the same as someone elses, but stress is the catalyst it seems.
So I think its a case of <gene susceptibility> + <catalyst A+B or both> + <extrinsic environmental stress> = automomic nervous system(fight or flight) <permeanantly switched on> central nervous system sensitivity to cortisol and then ongoing dysregulation of the immune system.
Effectively a system that is now extra sensitive to stress hormone and an immune system gone awol and upregulated and can't come down.
Everything we do is stressful, even ordinary things, like waking up after sleep, walking in shoes, bending down and standing up. These mundane things that no one usually notices are now stressors that are overly amplified to our systems, not just our brains.
That's my two cents for what it's worth. Quite how the mechanism works I've no clue.
Active relaxation and removal of toxins etc should in theory bring temporary relief. That's where my theory falls down as it doesn't always.
I think mine was linked to getting a bad case of Erythema Nodosum in 2017 after taking antibiotics for a dodgy chest cold. After that my body just started to crap out on me. As well as being diagnosed with Fibromyalgia, I've also had numerous disorders that appear to be linked to a compromised immune system. Ergo, I don't know if my immune system is compromised by Fibromyalgia or if my immune system started to fail before Fibro, which is how I got the EN which then led to Fibro. Since 2017 I've now got Necrobiosis Lipodica on my shins, which is rare and is usually contracted by people with Type 1 diabetes (I have neither type 1 or type 2). I have also noticed that I may now have Lichen Sclerosus! Again, this is another possible autoimmune issue. I'm at the point where I'm just waiting for the next weird and wonderful disease!
Sensitive personality and body, difficult relationships, but over the decades developed myself healthier in mind and body than ever before in my life, lots of sports, less anxiety, dream job. But praps that all still took its toll and then praps swine flu as first and a normal flu as the final trigger. "P'raps...."
My grandad became unwell when I was 21 (just before I turned 22). He had a very important role in my life and though he lived for another 8 years, his illness had triggered my condition.
I'm sure mine was brought on by stress and over working. I also have a weak immune system, which is partly hereditary, and I wasn't the same after catching swine flu a few years ago.
The stress from work caused me to have a seizure which I think was also a large tribute towards the cause of my fibro.
I had a very traumatic childhood so I think that this contributed too. I'm pretty sure that all of these aspects combined caused it for me.
I firmly believe that huge amounts of trauma puts pressure on us, in our brains and it causes us to have a psychological change of chemicals.
Constantly being in a "fight or flight" mode (depression/anxiety) can be a factor. I really wish there was more testing available for fibro causes, handling and maybe someday an actual cure.
Mine was after my sons marriage ended after just 8 months, and then the next day my dear dad passed away. A lot to take in.
LisaSnowFMA UK Volunteer
The word "cause" is an inaccurate one from scientific and epidemiological perspectives. Fibromyalgia presents itself as a complex syndrome, and the progression and prognosis vary wildly from person to person. Person A may have symptoms 20 years before diagnosis in mild and tolerable form, whereas person B may be so sensitive about any physiological sensation changes and pressed for a diagnosis before the full scale of disorder appears. My point is that any multifactorial disorder cannot be explained by one or a few "causes", because a cause reqires not only a temporal relationship to outcome, but it also needs to have proven biological and mechanistic link to the disorder. We simply do not have anything that met these criteria to claim as "causes to fibromyalgia".
What is called "causes" here really should be termed "triggers". What triggered the symptom onset of fibromyalgia is the question, and these triggers for the beginning of fibromyalgia can differ for everyone. It is a great question to ask because with this knowledge, we are empowered to control or minimize the triggering events so we stay in remission longer, or dial down symptom severity more successfully. Knowledge is indeed power, and I hope we all learn and practice what calms our discomforts so we can look forward to an easier day tomorrow!
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