Do you know what triggered your fm? - Fibromyalgia Acti...

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Do you know what triggered your fm?

lolly1970 profile image
26 Replies

Hi all, I know the cause of fm is still something of a mystery, I've read theories about it being triggered by a single traumatic incident, a bacteria or a virus, it seems the theories are endless. This has got me to wondering how many of you think you know what caused yours? I believe I know exactly what caused mine, 8 years ago I separated from my husband and I started going on dates (as you do). To cut a long story short I'd been dating this guy a few weeks but it wasn't working for me but when I tried to finish it he turned on me completely. He ended up hitting me around the back of the head with such force I had whiplash and migraine for 2 weeks afterwards. Needless to say I never saw him again but the trauma of it caused stress and insomnia like I'd never known before. My health deteriorated daily from that moment on and for the first time in my life I felt unable to cope. My symptoms worsened and eventually I sought the help of my GP. My Dad has fm and arthritis so lucky for me because of the family history I was taken seriously straight away and referred to a rheumatologist. It's my personal theory that there is a genetic link with fm but that something then triggers it as in my case. I genuinely don't think that I would be suffering as I do now if it hadn't been for that incident. Similarly my Dad thinks his was triggered by a motorbike accident when he was younger. So I'd really love to hear your stories and your theories as to what caused yours - who knows there may be a common theme that emerges. x

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lolly1970 profile image
lolly1970
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26 Replies
angied profile image
angied

yes my was thru trauma of losing so many people in 2 years, first we lost my sons friend aged 12 but unfort he and me saw him after he was hit by a car on the ground cos we saw a bike and my youngest son was out at the time so we rushhed over and his mum was in the car behind and saw it all, then my sil died suddenly,5 months later my best friend died of cancer aged 43 then 6 months later my mum died suddenly, then another close friend died suddenly of cancer 3 months after diagnosis then my sister died suddenly! i went into a deep depression and then the fibro hit me

Twiglet profile image
Twiglet

Hi, I think mine was triggered by a relationship that went bad. For 2 years I was under contrant stress, for the last year I slept on the sofa. I ran on adrenaline for such a long time, losing so much weight I was skelatol, I was never relaxed always waiting for the door to go when he came home. My hair started falling out and my nerves were in shreds. When it got so bad that it started to affect my son (he started to stutter) I knew I had to get out. The house belonged to me but he refused to leave, so we did.

Ater we left thhe relief was so great I was on a natural high but as that wore off my symptoms started. Gradually at first then 2 years after leaving everything when sour at work and they hit me in ernest. Been on a downward spiral ever since.

Now I've been dx hoping I can get some control. :)

66Amanda66 profile image
66Amanda66

Yes i think mine started around the time i found out i had a brain tumour, that was 11 years ago and i went through hell, i was expecting my daughter at the time and i had to have a massive operation to remove it, then i got meningitis and nearly died twice. I ahve never been well since and have had the symptoms since then , but i have only just been diagnosed with Fibro, i think my doctors put all the symptoms down to the brain tumour!

angied profile image
angied

hi christine im plodding along had to make sure kids were ok with the deaths as well as they were close to them all, im coping well the only one that i dont cope with is the death of my best friend still angry that shes died esp when it was cancer due to asbestos that she never worked with just walked passed a builing appt when she was younger! my old boss died this year and although i wanted to say goodbye just couldnt face another funeral, but thanks to the help of the anti depressants im getting there.

Kizzie profile image
Kizzie

Hi Lolly

I have been told by two rheumatologists that mine has been caused by whiplash that happened 4 years ago.

I think one said you are 13 times more likely for FM to be triggered by a neck injury than a leg injury.

My FM has also been worsened by the stress of the death of my aunt, losing my job and then the sudden death of my dad. I am also convinced by the genetic link because thinking back to my dads medical history, although he was never diagnosed with FM, I am sure he had it eg severe hip pain but they could find nothing on x ray to explain it.

My brother also has FM and he broke his neck in a rugby accident as well has having a DVT (another rugby accident!)

Kizzie x

chorley profile image
chorley

I have no Bloody idea what caused mine, I gusse i will never know :(

CHORLEY :P

Bumble profile image
Bumble

Not sure exactly.....ithink it may have started in a mild form after i had breast cancer but then a few years ago i had a cut that became badly infected and i almost lost my thumb...i was so ill from the infection and took ages to recover with flu like symptoms that wouldn't go away. After a month of feeling reasonable thewhole thing started up again but with new symptoms...then the periods between pain became shorter. From reading the blogs on here i think I'm one of the lucky ones and not suffering nearly as badly as so many of you...just take it a day at a time and feel so blessed on the 'good' days.

Mdaisy profile image
Mdaisy

hi mine was Glandular fever at uni..... had it for a yr and a half.caused trauma and stress to the body. Fibro came out 3 yrs later....

M x

AuroraA profile image
AuroraA

My mum was diagnosed with M.E. when I was a child, and suffered very badly for a decade before recovering completely and I too have wondered if there might be some sort of link there.

My own FMS came on after a miscarriage - I'd gone to my first scan to be told there was no heartbeat and to go back in a week in case my dates were wrong (they weren't, Valentine's Day was the only time we'd done it in ages!!) a week later there was no change, so they gave me tablets to make my body expel the baby and gave me an appointment for 48 hours later on the monday morning. At 3am monday morning I started hemorrhaging, but didn't realise this wasn't normal, and my partner didn't care - except that his sleep was disturbed(!) I waited for the appointment at 9am, by which time I'd lost very close to half my blood volume and was admitted to hospital for 4 days to have emergency surgery (after a very traumatic procedure while I was still awake) followed by replacement of salts, fluids, and blood. It was a month after this that the symptoms of Fibro really started for me, although I think I'd had odd mild ones for years before that. Unfortunately, after the miscarriage I also became unwell through anorexia, and for a good while I put my fibro symptoms down to that.

However, over the years since, my eating has become much healthier, my weight's returned to normal and my periods have returned, and yet my fibro symptoms have only got worse. It is a baffling condition that I just despair of sometimes!

I am currently in a women's refuge and have recently caught two bugs going round - a vomiting bug and tonsillits - everyone else has bounced back within a 2-3 days, yet I am still incapable of doing anything except the bare minimum after being unwell for almost a fortnight, and have been bed bound for much of that. I've been on antibiotics 3 times since I got here two months ago. I just don't seem to have any strength in my own immune system!

Does anyone else here find they have trouble fighting off infections?? (I should probably start a new post on that but now I've written this I don't think I have the energy! :S ) x

Oceandeep profile image
Oceandeep

Mine was triggered because I broke my neck in a skiing accident. It took almost a year to diagnose ..as it was over 15 years ago..and at the time...I was bed-bound for over 8 months. ( this was 2 years after the accident) up until them, I was healthy, never sick and VERY active ( worked in the skiing and yachting industry)...then last year was in a car accident and now have ( still) got sever whiplash..the very worst thing that could have happened. Been in a major flare-up ( and lost my little job-that kept me sane) because of if it. *sigh*

MissKittycat profile image
MissKittycat

Firstly gentle hugs to all of you - we have all had some very hard times in our lives - I think it could be the pain of loss that starts a lot of people off.

I lost my mum suddenly then had a major motorbike smash, then in 2005 I lost my 36y/o brother to cancer and three months after him my husband died in my arms suddenly. It was then I think that the symptoms really came out. I had probably just been coasting along since my mum passed away and had been ill since then.

I have sought bereavement counselling which has been really helpful, and in some ways helped me to identify the FMS..

Please know you're not alone and we are all supporting you x

Poochywoo profile image
Poochywoo

HI everyone, I am convinced my fm/ME started about 5 years ago after having pneumonia. I was off work for a month and very ill, although not hospitalised! I thought at one time if I sleep I won't wake up I felt so bad. I was on 3 or 4 different antibiotics. I went back to my gp several times after going back to work saying I didn't feel well anymore. Always tired no matter how much or how little sleep I had. It took her 3 years to finally believe me and sent me to a rheumatologist who diagnosed fm. When will doctors realise that we do know our own bodies and not all of us are lead swingers!!. Love and gentle hugs to everyone. x

jazher profile image
jazher

Hi there,

My fibro started after a extremly traumatic birth.

She got stuck and it was awful they literally dragged her out of me and threw her on my belly (sorry but dead), thankfully after 12 minutes of having no oxygen she started breathing. She was in special care and i couldnt even hold her for 5 days.

She is ok asfar as cerebyl palsy (which is excellent), but the poor thing had her nerves ripped in her shoulder so is having real problems with her shoulder and arm.

The hospital appointments were constant near enough weekly for about 4 years.

All that trauma and a huge amount of worry and stress definatly brought fibro on, but i suppose i am pleased that i seem to of come out of it worse than she did, I just wish she had no problems.

kel xxx

Ebony profile image
Ebony

I have been told by my consultant at the Pain Clinic at a large hospital in Bristol that I was probable born with FMS !!

topcat7007 profile image
topcat7007 in reply to Ebony

Hi Ebony,

Do you live in Bristol?

Bacaloca profile image
Bacaloca

I used to live on a boat. I fell into the canal while helping to push a boat from it's mooring. That is where we have traced the beginning of my problems to.

So I guess that was a traumatic experience.

pottydog profile image
pottydog

Hello all, new here but answering this before all else as it really caught my eye. I have been wondering about a genetic link and what triggers FM myself.

I was diagnosed by my GP about three years ago, after I was treated for eye cancer.

I think my GP thought the cancer was the trigger which is why I've been chewing thoughts over so much.

I had a 'challenging' childhood with a mentally ill mother, an emotionally abusive and all controlling step-mother, and a father who was just unable to cope. I grew up surrounded by suicide, drugs, alcohol, violence, and tobacco smoke was the family air freshner!

I grew up knowing love, no matter how fleeting/erratic.

I always thought I had a healthy, if not exactly happy childhood, but a newly found long lost childhood friend remembers me always limping, (I do remember rather a lot of ankle pain)!

O

pottydog profile image
pottydog in reply to pottydog

Whoops! Pressed the wrong button!

Like others I have lots of other trauma's, but the physical ones that really make me think about the fibro are food poisoning, (on my honeymoon night!), swiftly folowed by glandular fever. There is a strong family history of depression on my mother's side and I'm on full alert just now as one of my children is been treated for depression, although we've no way of knowing if it's a genetic problem or not. Both of my siblings are on meds for depression and one also has M.E.

I have, gratefully, managed to avoid the Big D, although my sunnyside isn't always bright.....bit like the rest of me really!

lolly1970 profile image
lolly1970

Wow, firstly thank you all so much for your responses. It must have been extremely difficult for some of you to share such terrible memories with the rest of us. You have all been through so much which has convinced me more than ever that this illness is somehow caused by a traumatic trigger but that there may also be some sort of genetic link. My heartfelt thanks and gentle hugs to you all, please continue to tell your stories, I believe absolutely that the more we share our experiences the greater the chance we will finally start to understand this mysterious condition. xx

kasp767982 profile image
kasp767982

My, I have found reading this so interesting. Thank you all for being so candid with your stories of how you can to be here & sharing your FMS journey with us all.

Mine is a bit like the proverbial 'chicken & the egg' I also have an arthritic condition called Ankylosisng Spondylosis, which effects my Sacral joints & neck, I have been told by my rhuematoligist that the 2 conditions sometimes go hand in hand. They are not sure why, but my theory is because of the 'associated depression' that someone with a long term &/or degenerative condition suffers. I have had generalised pain for so long now, that it's hard to tell if it was the AS first or the FMS, one thing I do know is that in the pain is asserbated by stress, worry, upset & over productivity.

I have learned to not worry about things I can't change, leave the cobwebs for another day if I am spent & don't plan to far ahead. Remember that you only have so many pockets of energy to use in any one day & rolling some leftovers to the next day might work occasionally, but in the end it will pay you back. Pace yourself through the day & things will get done, don't beat yourself up because you haven't managed to do something, because that will just make things worse for you. Praise what you have done, not scold what you haven't ;)

ZoeH profile image
ZoeH

Hard to say as there were many traumatising moments in my life around the same time i contracted glandular fever. I was ill for 4 months, barely able to lift my head, unable to eat much I recovered for a few months but my health kept going up and down and i was catching every bug, cold and virus. Eventually i just crashed. It could have been the virus but as i said i was going through a great deal of stress and trauma too, my hair was falling out, my weight was up and down and i was suffering severe anxiety due to all of it. Could possibly have been a combination of both and interestingly seems to be the recurring pattern here. It is very interesting to read everyones comments because i am a science student and i am currently attempting to study what causes Fibro. I think i may have pinpointed a cause but the trigger is still a mystery so this info has helped me with my study hugely. Thank you all so much and best wishes to you all. xxx

buzzing033 profile image
buzzing033

mine started after an accident at work when i lifted a 40lb case of frozen food and turned at the same time thus hurting my neck, i felt the pain immediatley, it was like somebody had jabbed me in the neck with a very hot knife, the pain was immense. it took 4 years of hospital appointments and professionals before my rhumatologist came up with the fibro. from the accident onwards things have been a constant spiral of other complaints, the aching body and painful legs, the no sleep and constant tiredness, the weight fluctuation the clubbing to the fingers and toes the finding of helmet shaped hips and the pain that they cause, the depression. everyday is such a struggle now to the point of just wanting to stay in bed all day with my oramorph. life is a constant battle these days i just wish i had never had that damn accident!!! xxx

Wales1965 profile image
Wales1965

A fall on a high street on my way into work at 8am injured my knee and elbow and my neck, made it into work in shock.. the senior staff could see i was in alot of pain and in shock and made me a cup of tea and then made me stay in the office until 4.15pm when I cried to let me go home. my knee was so badly swollen I could hardly walk my elbow bruised and some serious neck pain. Went to doctor next day and sent for an x ray of my knee. turned out I had injured my neck (seriously) and chipped a bone near the elbow but neither were dealt with at the time - probably becuase my knee was the worse pain. 2 weeks later my daughter had to lift me out of bed I could hardly move and was in a seriously bad place with pain for nearly a year. that was nearly 4 years ago. Things started to improve and last year I required spinal surgery to remove a compression on the spinal cord (???? as a result of that fall) and fusion of C4/c5 vertebra, i was diagnosed with FM 2 weeks ago. It has been a long long battle

lolly1970 profile image
lolly1970 in reply to Wales1965

Goodness Wales1965 I can't believe they made you stay at work in that state, they should have been calling you an ambulance by the sounds of things. They should be sued for negligence!

just a tough life, infertility, miscarriages still birth dramatic birth with youngest daughter prolapsed cord, no heart beat thought she was dead, than 6 weeks after that my hubby was accused of theft at work new firm had taken over and didnt want to pay redundancies, so it took 6 months to clear his name, he had to attend court every month until the cps through the case out there was no evidence, so he lost his job developed depression and ocd had a drink problem

Smily profile image
Smily

Car accident. I suffered a whiplash and neck trauma. i first developed hypothyroidism and finally fibro. Some people developed first fibro and then hypo instead-it depends.

I have no genetic conexion with it.

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