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Saturday 24 April 2010

What event do you think triggered your FM/CFS/ME?


*viral meningitis. It took several docs 5 days to diagnose me after saying its a migraine, ear infection, and throat infection. I feel if it was caught earlier I would not have got Fibro 3 months later.

*A car accident.

*Childbirth or the use of the Depo Provera shot afterwards, not sure which one to pinpoint it one, I just know that was when it started. Right after my first child was born.

*A car accident. My symptoms started the day after

*A small motorcycle spill.

*I think my dairy intolerance hasn't helped, also have other immune problems that triggered my Fibro.

*Car accident

*I think my EBV was reactivated (probable mono at age 17) at age 38, my first semester of nursing school. I managed for about fifteen years before the effects forced me to retire with disability.
The day after I lost my last job (couldn't remember new-hire orientation from one day to the next, or make sound judgements), I had a major emotional and physical meltdown, and was diagnosed with fibro soon afterwards.
That was nearly a year ago, and I'm still picking up the pieces. Although, stopping work was the best thing that could happen to me-had I been still slogging along, I honestly think it would have killed me.

*Gas leak in my flat.
I had inhaled gas for months unknown to me as I do not have much sense of smell from the after effects of a nose operation.
I went to bed one day healthy and woke up badly disabled the next. Not only FM but also Menieres disease with bilateral hearing loss. Great!

*The thing that triggered my Fibro was when I was looking after a relative and was knelt down on the floor and went to stand up and broke my right foot very easily that is when it was picked up I'd got them.

*Having 3 jobs,going to college then uni full time,partying,not sleeping enough having a very hectic lifestyle and to top it off I had my belly button pierced,didn't heal &I had lots of infections (the piercing was the only thing at the time that could of made me ill)
The doctors told me I'd run my body into the ground.will not really ever know for sure.

*I had a really nasty fall in the snow, in Holland, fell and hit my face/head and that triggered of my Fibro

*Well, my Fibro symptoms started in childhood, after a couple of Philadelphia winters where I was almost continuously sick (measles, mumps, flu, colds).
The MCS kicked in after I was riding my bike and rode through a cloud of insecticide (the "professional" pest control company apparently ignored the warnings not to spray on windy days!)
I was too zonked after making it home to take a shower, so it was in my lungs and on my skin for several hours. The CFS symptoms came on gradually, and I can't really say what triggered them.

*Car accident, poor nutrition as a child, physical and emotional abuse as a child, major head trauma aged 8, having my kids in my 40's, not much hope for me really!

*My FMS was triggered by bad bouts of glandular fever when I was 19 and 27, the icing on the cake was when I was in a bad car smash at the age of 31.
Since then it's been downhill, with the FMS symptoms becoming worse as I'm getting older, I'm now 38.

*Abuse during childhood was first wave, then onset of RA.

*Childbirth 7 and a half years ago. I had an epidural go wrong & suffered a dural tap & haven't been right/well since.

*Mine stared back when I was bout 16 after 8 years of my brother abusing me n then bad relationships I had bad pain when I was pregnant had 3 kids but hated been pregnant. Then in 1999 my back went so from there on I was told I had chronic pain n now been told I've FM. Hope I haven't bored you all too much.

*Problems with childbirth and post op complications of C-Section.

*Take your pick! Emotional and sexual abuse from a child to adult years, dealing with parents and grandparent addictive abuse as a child, Scarlett Fever as a child, body surfing accident (severe whiplash and compounded fracture in back), two car accidents as a teen, continual nurturing of others (putting myself last.) I could go on, but will stop here.

*We all seem to have had events that have overrun our sympathetic nervous system, or our primary nervous system.
This is where current thinking is leaning, though with the causes so manifold it may be some time before they nail it down.
When we suffer trauma our body releases extra chemicals and these chemicals in too high a quantity trigger the processes behind fibromyalgia.
Sadly it is a chemical our bodies make because we need it to remain healthy and active, but like many things too much causes damage at cellular level and changes in our nervous systems and cellular misinformation signals that precipitate the worsening of symptoms over time.

*Had it for many years and don't know for sure the cause. I do know that when I developed colitis it sent me into a major tail spin. Fibro just went out of control and hasn't stopped for a breather!
My piece of advice is Know the side effects of your meds as they can cause some pretty bad things for your body (as mine caused the colitis.)

*Giving up smoking then after 10 mins on an exercise machine my auto immune system decided to go overboard and give me RA and FM - its been a tough year.
I could cope better with the pain if my brain was still intact but I can't remember or work out anything important any more. Still breathing though, lots of stuff still to do.

*Car accident #4 (and no, they were NOT all my fault)!

*I had a botched surgery and several to correct the screw up and all within a years time, then this hit. I'm sure that's what did it to me, maybe I should have that thrown in the malpractice suit too.

*Triggered? I don't think it was triggered. I believe it is a disease that I have/was born with that eventually developed later in my teens.

*Much like the others, abused child, bad relationships, full time college then Uni alongside my job and four kids, two of which were under one year old. I think I always had it but mild as a child.
It really started to kick off after I had the twins plus I was also wearing my body into the ground because I didn't know what was wrong with me and tried to carry on.
When I got diagnosed, I moved to Ireland a week or two later. Just packed up my things one morning and asked my sister to book me on the boat. Left my job, Uni and my house with all my possessions.
I still believe it was the right thing to do, even though I'm back in the UK now and going back to Uni, hopefully!



*Triggered means exactly that.
You have a genetic predisposition to a certain illness or biological problem from birth
Some event, major or innocuous will then trigger it and you develop full on Fibromyalgia.
For some reason there are up to 10% of the population that are potentially pre-disposed to FM and the trigger event can be something that you don't notice.
Even the onset of puberty has been put forward as a trigger as it is such a huge change for the body to handle and many new chemicals are being produced in the body at an alarming rate. This could well be true for you?

*Bad job experience did it for me, constant mental stress and too many high speed typing sessions with no breaks, head turned to another screen, 12 hours at a time, then more at home.
Had had a little pain and weakness before that with heavier than normal exercise. Result- Depression, anxiety, and surprise, the Fibromyalgia that my mother told me I had.

*I believe I was born with it but it was dormant until a slip and fall.I have always suffered migraines and back problems so pain was always there.It got worse after me and a sheet of ice had a disagreement on whether I should be walking or laying down.

*As a child I was sick a lot with asthma and allergies. Was told by one Dr. that I had CFS in my 30's(I'm 43). But the BIG incident that started FM was that I was on a drug called Meridia for 3 years.
My Dr. took me off it cold turkey! And what I found out later was what I was going through was like a protracted withdrawal. It has been one thing or another since then and that was 6 years ago.
My rheumatologist said I have FM but not CFS. I am extremely sensitive to any new medication (except asthma meds). I could go on and on!

*Mine started the day after my 18th Birthday, so I reckon it was just waiting to strike.

*I think it was pushing myself to work when I had mono and valley fever within the same 2 months. Taking OC meds to get me through (thinking it was just a bad cold) and having a miscarriage because of the meds I was taking the next month.
Then came the cooping problems from the miscarriage. I think it was an overload. Have learned allot and I do very well keeping the pain under control without a lot of medication.

*One other thing about my fibro, my mother is severely disabled with it and my sister has it but functions. My daughter has severe RA but her symptoms mirror fibro.

*I think I started experiencing some symptoms after being diagnosed with endometriosis 9 years ago, but suffered a serious relapse after major stomach surgery last year.

*Reading all this is making me wonder about my trigger now, I'm basically allergic to everything (severe dust allergy,year round hay fever, medicines, cemicals, fruit and veg, paint, animals, latex you name it I'm probably allegic to it)
I didn't know how allergic I was till last year, I also have poly cystic ovaries that has been a nightmare could these of done something?? I used to be so active.

*Depo seemed to aggravate my FM as well.
Not sure when it started, always remember it being there, from childhood. Childhood trauma maybe, whip lash as a teenager, childbirth. All these things seem to have intensified it, but I can't remember ever not feeling this way.

*Oh, and I forgot to mention that I lived an extremely stressful lifestyle (hated my job, abusive relationship, burning the candle at both ends, drinking and smoking loads, etc.) until my health finally failed. Like they say, eventually somethings got to give!

*I have absolutely no idea. I've read that infections can set it off. I had respiratory problems from birth and used to get 2 or 3 throat/chest infections a year.
They stopped around the same time that the Fibro symptoms became much more obvious (although that may be coincidental and more to do with my girlfriend forcing me to take better care of myself.)
I've had back pain since around 14 or 15 which my doctor insisted was just growing pain. This became much worse around 18 and the joint pain and IBS have settled in over the last 5 years or so (I'm 28 now).
I really wish I could point to one incident and confidently say that was the cause, but with all the various symptoms presenting at different times, it's impossible to say.

*Saying that my disease was triggered by an event just furthers the already enormous amount of stigma attached to this utterly disabling disease.

*Getting run over when I was 6 years old & having severe bruising around my spine that stopped me from walking for about 6 weeks, I was never right after that.

*Arthritis in hips and back created sleep problems - although I've always been a light sleeper- which probably triggered FM.
Although Looking at how my Nan was I think she had it too but undiagnosed as she died 24 years ago. I've had mysterious aches and pains from early childhood so maybe it was inherited? Who knows.

*I cracked my coxis when I was about 11 I fell of a small wall.

* Mono!

*Injury to arm while channelling a brick wall for wiring.

*Car accident when I was 20 and 7 months pregnant with my first- neck hurt from then on and was on painkillers but pain never went and slowly travelled over rest of body, and of course other symptoms crept in as the years went on.

*Not sure. Had rheumatic symptoms from age 11. Stress from losing 1st baby .
Then had two miscarriages.
Had threatened miscarriages with my eldest two, took 4year docs to diagnose gallstones. They overflowed into my bile duct. Diagnosed with Arthritis then ME. 7yr ago Fibro

*The death of my lovely dad, I think, triggered my Fibro, that was 8 years ago.

*Car accident Nov 08, from Dec 08 my life has never been the same.

*When I was 28 and had 3 emergency surgery's ectopic pregnancy,gallbladder,then total hysterectomy then divorce then wa-la they were looking for a pituitary tumour lupus etc but Fibro and chronic fatigue was my 1st diagnosis

*I have FMS due to genetics as I have family who also have FMS (on my Mum's side )

*I believe it does have something to do with genetics. But I was a premature and alcohol baby.
Arthritis as a young child, dairy intolerance, back injury from hard labour work 2000, of course bad relationships & a lot of abuse.
I was also on depo for many years & was diagnosed with Fibro after my 2nd child that was born in 2005. Was in car accident when pregnant with son 1995.
Still trying to find something that works for me. Arthritis has went from fingers to my knee's & hips now. Don't sleep because it is to painful to lay in any position for more than 20 minutes.
I remember always having some sort of pain, somewhere all threw-out my life.
Dr.s have gave up on me but I have not giving up since I have 2 kids to raise by myself.

*Birth - mine

*Car accident and being abused by EX! Also maybe the 10 epidural's I have had.
One in childbirth and 9 for steroid injections. Having five kids and 8 years of emotional abuse!

*Maybe genetics I have two Aunts who have Fibro and I think my father does!

*No idea.
I contracted Mono after hanging around a friend who had had it.
I was competitve skater. around age 22 I just realized I hurt all the time.
I was diagnosed in 1991 @ OSU med center.
Never heard of Fibro before that. developed full on CFS immediately after birth of first child. recovered thanks to alternative med, but still have flares

*Looking back I had it mildly as a child but got severe after an emergency c section at 33 weeks due to a placental abruption.

* think my started after the birth of my 2nd child, but didn't hit me 100% until my daughter was so ill she almost died, when she was 13, and then it was up to up me to find all out about her illness and learn so much to keep her well everyday of her life, I would spend days without sleep. I'd would be so worried about her all the time.

*My very long and messy divorce procedure ! Now that I'm happy with my lovely partner I have to deal with the result of above: FM. Life's not fair.

*I had a bad fall was in hospital for 10 days on my back, it was just after that I was diagnosed with FIBRO. I think shock can sometimes trigger Fibro, of course that is not the only way soft hugs everyone.

*Glandular fever 3 times as a teenager.

*A life full of lots of bad stress along with illness and a back injury a month prior too my first major severe flare up.

*I had a particularly unpleasant op that I just couldn't seem to bounce back from or heal. Then I started catching every lurgy under the sun. Then came the muscle lethargy and the pain.

*Back injury from gymnastics started it off, then car accident made it worse, then wisdom teeth surgery - the three really brought out the Fibro - by the wisdom teeth. I had TMJ, IBS, etc.

*Ah that's not to mention the 3 other ops before that, plus other mental factors. Reading all these comments makes me see I'm pretty textbook!

*I had no symptoms ~ zero. Until I had a complete hysterectomy. I developed restless leg syndrome, then FM. It's been 11 years, of pure hell.
I wouldn't wish this on anyone and there are times I just think it's too much. I want my old life back.

*When I think back I have always had some pain. I had meningitis at 5 months. But everything got much MUCH worse, to the point of diagnosis when I was thrown from a galloping horse about 2 years ago. I was thrown backwards, tucked & rolled, hitting first my sciatic nerve then rolling my neck.

*Interesting to read these as I'm going to a Fibro / CFS clinic next week & I'm sure I need to consider what triggered mine. Hmm, could've been a whiplash I had at 18 with years of neck pain, falling off a horse in my 20's, having a high fever after the birth of my 4th child, a concussion head injury (abuse) in my 30's? Lyme Disease in my 40's? Seems like I've been tired my whole life with poor endurance.

*OH! and at the same time worked a job where I was assaulted on a regular basis. I worked at a juvenile psych centre.

*Tonsillitis 3 times in 6 weeks the bronchitis straight after that. Within a couple weeks couldn't move my neck then pain went down spine and spread all over. That was 11yrs ago.

*Back surgery: removal of L-4 disc

*I suggested this question to Duck, as I am very interested in how this disease works. Reading all your answers, some very obvious trends jump out.

One is how many of you list a whole lot of factors you believe contributed to your getting FM/CFS/ME. This would suggest that cumulative stress (physical and/or mental) may play a part. It may be that cumulative stresses can create a predisposition to getting ill, or wear away resistance that would prevent getting ill.
Either is possible.
One is that many people say FM/CFS/ME hit them when they were already down, suggesting there is an opportunistic element to this disease - it gets its opportunity when resistance is low
One is how many of you can date the onset of symptoms to a particular event or other illness or injury, which would suggest that *for some people* there is a 'trigger'. It may be that the trigger takes advantage of something that is already there (eg if you were born with it or contracted it in childhood but it's been fully or partly dormant).
Personally I believe there is a viral or bacterial element involved. If it can be passed by close contact or through family lines, that would explain why so many people say they were born with it, or had flashes of it in childhood, while others had their first taste of it later in life.
Just my personal observations. But this thread is really valuable in terms of comparing trends and experiences, so thank you for all the contributions, so freely-given.

*I've only recently been diagnosed, but had anxiety as far back as I remember, then stomach aches, then terrible period pains always, headaches, panic attacks, agoraphobia etc etc. Real stressful job in my late 20s and 30s was one of those 'triggers'
I reckon as I also got a second period of really bad phase of agoraphobia/panics etc, Then got pleurisy, which left me with very bad back pain, stiffness, coccyx pain etc. Back still flares up, but pacing myself and not working definitely helps as I am more in control.

*Think the ME is probably caused by Ehlers Danlos, my Fibro definitely is.

*Lymes Disease did it for me.

*I inherited it, had severe 'growing pains' as a child, plus severe mumps and chicken pox but CFS began when I was 20 caused either by severe food poisoning or living in a damp mouldy home. Was sick for the 6 months I lived there!
Fibro was diagnosed approx 7 yrs ago after a virus caused my muscles to go into spasm, but had symptoms after traumatic birth of my 2nd child a year before that, was diagnosed with IBS during this time also, but my mum's death 10 years ago may have had an impact too.
Had an undiagnosed hereditary bone disease also which I only found out last year...so take your pick, could be anything!! At least I inherited a sense of humour along with the rest!

*I'm a bit confused, if FM is to be taken seriously as a disease, then how can an event trigger it? I've had a stressful, but good life. Everyone has stress. Some of us have problems with our brain chemistry or immune systems such that we don't process that stress in the same way.
I'm interested to hear what scientific evidence there is for life events causing a disease. I'm not being confrontational - I just really want to understand this rotten condition I have.

*I know mine sounds crazy but I think mine started around the time I started birth control pills and when I moved up to a higher elevation.
I didn't have but maybe one migraine a year and when I started those I had a constant headache/migraine. Im off them now, but I still It got worse when I went skiing for the first time a few years back and I had a crazy wreck and fell straight down on my back. Now I have pain there all the time.

*140 km car crash, no blood no broken bones, just ripped the soft tissue away from my bones & Maine nerve.

*I started depo shot when I was 13, got the mumps even though I was vaccinated when I was 15, and then Mono as well at 15. Things were never the same again. Diagnosed with Interstitial Cystitis at 20, carpal tunnel at 22, food allergies and chronic candidiasis at 23, then Fibro, TMJ and PCOS at 25.
I am now looking into being treated for leaky gut syndrome because I believe it has a strong connection to my health issues. Anyone else have leaky gut or know much about it?

*Menengitis

*When Galileo suggested that the Earth was not the centre of the Universe, he was convicted of being "vehemently suspect of heresy".
There is always scepticism whenever a new scientific theory is put forward, especially in medicine - think infection, vaccination, retroviruses (the existence of which for years could not be proved even though scientists knew if they *could* be proved they would provide a reasonable explanation for AIDs)
Just because something does not conform to a previously-understood pattern does not mean it automatically must be wrong or that we must fear its not being taken seriously.
Every day, people with FM are not being taken seriously because a disease that does not show on any tests doesn't make sense to infection-oriented doctors.
If you read back through the entries here, all I'm saying is, there are some interesting commonalities. For instance, everyone has stress, I agree. Not everyone has stress against the same kind of context as many of us are reporting. The entries here are saying something about our reactions to stress that is different to what non-FM/CFS/ME people experience.
I'm not a scientist, but it doesn't take a scientist to say: hey, there are some interesting patterns here.

*I would agree - the recurring theme is some sort of physical or emotional trauma or stress, and that is what I put my onset down to as well, the 20 anaesthetics, 9 of which were failed surgeries over the last few years.

*Virus laid me low for 6 weeks with fever and body pain but I had viral polio as a kid, so that the reason for me.

*I don't think there was any event. I was fine one day and then pain.

*A virus

*A car accident and whiplash.

*Trauma from abuse,the a very long labour!

*Massive blood clots in my leg from ankle to mid-thigh--turns out I have genetic mutation of genes controlling clotting.

*Stress combined with chemical overload.

*I was hit by lightning in 2002 - it took several years, a lot of tests and constant pain before they diagnosed me with Fibro and neuropathic pain... all I know is that I've been in pain every day since then - if it's not one thing, it's another!

*Being knocked about by my first husband, fell down a staircase once.

*Probably stress and probably all the 10 surgeries that I have before could be hereditary.

*Breast cancer


*Birth of my 2nd child. love him to death!

*I believe that mine started around the same time I fell pregnant with my first child through IVF. The year before this was awful with 2 failed attempts at IVF.
I have endometriosis and pcos, had my Gall bladder removed about a year after having my baby and then my 2nd pregnancy compared to first was awful ending up on crutches, then my 3rd pregnancy (thought I'd of learnt by know) ending up in wheelchair then from awful delivery got worse until now.

*Mine is probably genetic. Think my dad probably had it; then I fell down stairs, have had three major operations, and lost my mother. my son and daughter also have it. At least I have someone close to compare notes with.

*When I had stress from my son being arrested for assualt as a minor my whole system crashed. Adrenal exhaustion.

*Car accident - I was rear-ended at a red light. I was never the same since.

*Flu, without a doubt, and before that my entire life of stress brought down my immune system huge.

*I had a lot of stress and health problems in my childhood and a couple of car accidents, but I think the clincher was Encephalitis, high fever and fluid on the brain.

*I love having these questions. I learn a lot when reading of others and their situations re: fibro/cfs

*I think years of stress. And after losing my job in 2003 & having to move again, I think that was the last straw for my body & the fibro was set in motion.

*Stress can cause a lot of ailments in the body, not just fibro. You're right everybody has stress but too much of it keeps your body in a constant fight or flight state which is only supposed to happen when you're in danger & need to flee. When it happens constantly, it makes a person more susceptible to disease.
H posted some good points. I think there's a lot more contributory factors but stress just doesn't mix well with any of them.

* A car crash triggered my FM

*Looking after husband after operation seven years ago, I was working two jobs, desperately stressed and overworked, looking after five kids aged 5 to 14, had only just bought our first house so had mortgage to pay, and then I got a severe chest infection and never recovered.

*I'm not sure really was physically abused as a teenager for a number of years. I had 'flair ups' every year or so for a few months (everyone put it down to depression but I had nothing to be depressed about at the time as life had improved).
Always had pain so FM was always lurking but that was put down to flat feet.
I managed to keep going until about 7 years ago when I was so tired and sore I just wanted to curl up and die.
Saw the doc who said ME, then a specialist who said FM. was okish for another two years till I had an emotional trauma which knocked me off my feet. never physically recovered and am gradually getting worse.

*Working in a sick building and the exhaustion and stress from years of abuse as well as being in an abusive marriage

*I got pregnant with my son in '94. I threw-up EVERYDAY, more than once most days; I even puked during delivery. I had never been a person who was sick until then. I lost 20lbs during my pregnancy.
He was born full term, 7lb12oz, 21in; perfectly healthy. I however didn't remain that way. By the time he was 4mths old, I couldn't get out of the chair to take him to take him to his bed when I'd rocked him to sleep.
My legs just wouldn't work. It got worse and worse. It slowly started moving all over my body. The stress of not knowing what it was made it worse. After about 3yrs I went into remission and was doing really well. Then I got pregnant again, I thought no way would another pregnancy be the same as the first. I was wrong, just the same only a beautiful little girl this time. That was almost 10yrs ago and my body still hasn't recovered.

*An Ectopic pregnancy! Devastating I nearly died. It is something you never get over.

*Sounds so similar to my own experiences!