Poll Fibromyalgia Onset Poll

[Cort]

A recent study suggests that, contrary to received wisdom, most FM patients cannot identify a precipitating factor that kicks off their illness. About 25% of people with FM could identify a single stressful event but most couldn't.

How did your fibromyalgia start for you? Did it appear to be triggered by anything (accident, infection, surgery, pregnancy, emotional stressor?) or did it occur out of the blue? Were you under more stress than usual at the time or were things going along normally?

 

[Edwin Gregory]

My fibromyalgia started after a chiropractor made extra severe adjustments to my back. He admitted he did too much, too fast. I was fine before that. That was 8 years ago.

 

[Cort]

My fibromyalgia started after a chiropractor made extra severe adjustments to my back. He admitted he did too much, too fast. I was fine before that. That was 8 years ago.

Wow - didn't have that one in the poll!
Man oh man.....a tough way to get into FM - entirely avoidable...
I guess thinking about it that would end up in the physical trauma answer...

 

[Katie]

For me, it's a puzzle. I was first dx with FM in the late 1980's by a sport's medicine doctor, however after that no other doctor would agree until I was dx with CFS in the 1990's but again after that doctor left then every other doctor didn't accept that dx. I did have 3 rear-end collisions-none my fault in an 18 month period. I had chicken pox as an adult, got divorced and raised 3 kids on my own for 18 years, had a bad skiing and cycling accident, also 18 months apart. Had started limping after the skiing accident, saw a physio-whom I hadn't seen before, he put large vibrating cups on my lower back and legs turned the power fairly high and didn't give me a call bell. By the time he heard me yell well it was too late. The next day I could not even get out of bed. I improved to the point I could walk again but with a definite limp. The following 15 years I have slowly, sometimes rapidly declined in health and energy. In the early years before cymbalta I have often severe pain as well.
So what is my answer? Stress and accidents, but originally could have been chicken pox.

 

[judith westerfield]

My thinking is that our central nervous system if under chronic stress something, any additional stressor - an accident, an injury, an illness, surgery, emotional distress etc. - sends it over a critical mass and our over-loaded circuitry gets stuck/altered/impaired. My guess is that there are also various underlying "conditions" that are implicated.

In retrospect, my fibro/cfs started after a prolonged period of stress (to which I had habituated) and then exacerbated by the hormonal swings of peri-menopause

 

[Thobby]

You know, I answered "gut upset" above, but I don't know that that's true. Food poisoning certainly triggered my CFS in 1987, though at the time I was also being slowly poisoned by a chronic carbon monoxide leak and I didn't know it. But I wasn't diagnosed with fibromyalgia until after my 1990 auto accident, and I don't remember whether I had fibro symptoms, as distinct from CFS/ME symptoms, before then. So perhaps physical trauma would have been the right answer.

 

[Susan Kennedy]

View attachment 308
A recent study suggests that, contrary to received wisdom, most FM patients cannot identify a precipitating factor that kicks off their illness. About 25% of people with FM could identify a single stressful event but most couldn't.

How did your fibromyalgia start for you? Did it appear to be triggered by anything (accident, infection, surgery, pregnancy, emotional stressor?) or did it occur out of the blue? Were you under more stress than usual at the time or were things going along normally?

My fibro started after I had a complete hysterectomy about 9 yrs ago. I just never healed as fast as I thought I would. I was on the couch for weeks and so tired. I'd sleep for more than 10/12 a day. Then, I started with foot pains that slowly progressed to my knee areas and then to my pelvic region. I do really think that I would be the same "me" as I was before if I had not had the surgery done. I was just starting 'change of life'/menopause. I had mono @ 15 yrs old. I truly think my surgery set something in motion or the Epstein virus reared it's ugly head again! This feels like I have mono all over again but it never ceases!

 

[Cort]

For me, it's a puzzle. I was first dx with FM in the late 1980's by a sport's medicine doctor, however after that no other doctor would agree until I was dx with CFS in the 1990's but again after that doctor left then every other doctor didn't accept that dx. I did have 3 rear-end collisions-none my fault in an 18 month period. I had chicken pox as an adult, got divorced and raised 3 kids on my own for 18 years, had a bad skiing and cycling accident, also 18 months apart. Had started limping after the skiing accident, saw a physio-whom I hadn't seen before, he put large vibrating cups on my lower back and legs turned the power fairly high and didn't give me a call bell. By the time he heard me yell well it was too late. The next day I could not even get out of bed. I improved to the point I could walk again but with a definite limp. The following 15 years I have slowly, sometimes rapidly declined in health and energy. In the early years before cymbalta I have often severe pain as well.
So what is my answer? Stress and accidents, but originally could have been chicken pox.

I wonder for how many people it's just bad luck - a run of accidents and other injuries and something happens to the system? It shows how hard it can be to identify a single factor as well. For my ex-girlfriend it was 4 or 5 back surgeries. After that she had failed back syndrome and fibromyalgia.

 

[Cort]

You know, I answered "gut upset" above, but I don't know that that's true. Food poisoning certainly triggered my CFS in 1987, though at the time I was also being slowly poisoned by a chronic carbon monoxide leak and I didn't know it. But I wasn't diagnosed with fibromyalgia until after my 1990 auto accident, and I don't remember whether I had fibro symptoms, as distinct from CFS/ME symptoms, before then. So perhaps physical trauma would have been the right answer.

Interesting....food poisoning started your ME/CFS than an auto accident triggered the FM. My guess is that the food poisoning primed your system for more trouble down the road. It was food poisoning that started it all off the Thomas - can't remember his name - famous advocate and I think Laura Hillenbrand...

 

[J William M Tweedie]

Diagnosed after bone marrow biopsy and two hemotologist experts opinions, with Polycythemia Vera (PV) early 2011
Was started on Hydroxyurea
A month later was hospitalized for 15 days with a Pyroxia of Unknown Origin (PUO)
Ceased the Hydroxyurea contrary to Dr's recommendation (I was convinced it caused the PUO) and opted for weekly venesections
Continued the venesections for 5-6 months meanwhile insisting the Dr have specialized tests done to verify the PV. (I was in Malaysia and they had to be sent out of country.)
Tests came back negative and I stopped the venesections - having been free of the 'redness' that accompanies PV for a couple of months but the fatigue never went away.
The fatigue that accompanied the PV continued through 2012 and worsened in 2013/14 (ME/CFS self diagnosed) with pain appearing in late '14.
Was referred to a specialist in late 2014 who declared I had Fibro because of the pain but recognized that ME/CFS was the flip side of the Fibro coin.
Have the pain finally under control with Gabapentin/Ibuprofen and extreme pacing. It comes back with a vengeance if I excert myself physically to the slightest degree.
Am trying to get Cymbalta here in Canada but it is not covered by the Health Insurance Plan - yet.

So, PV, PUO, extended ME/CFS led somehow to Fibromyalgia!

 

[Sharon Chaput]

In 1992, I was hospitalized for "viral" meningitis for 7 days. Approximately 4 weeks later I developed Bell's Palsey and then a few weeks later I had severe bilateral parotid gland swelling. Finally an ID MD tested me for Lyme Disease around 5 months after being hospitalized for meningitis. I tested CDC positive and was treated for 3 weeks with IV Ceftriaxone. I was 90% improved and MD said remaining symptoms old resolve with time. I then developed all over muscle pain and was diagnosed with Fibromyalgia in 1993. In 1994 I was diagnosed with "Lyme Arthritis". In 1996 I was diagnosed with Grave's disease. Too exhausted to write rest of my story and will add rest later.

 

[frenchgirl]

Mine started after i got bird flu in 2009, but that might just have been the last nail in the coffin as had been very stressed for years. Multiple car crashes, though not serious; hysterectomy, moving house, friends dying of cancer and caring for my invalid mother.....

 

[MollyO]

I was diagnosed with PTSD in my 20s due to prolonged sexual abuse in my home during my teenage years. I believe this took my Central Nervous System to the brink. I believe stress from my divorce at 34 pushed it over the edge. The onset was extremely rapid, however, I can tell you the exact day everything changed. I collapsed on the floor walking to the bathroom and nothing was ever the same again. I was diagnosed in less than 3 months, which I know is rare, but I believe it's because the change was so fast and extreme.

 

[Cort]

I was diagnosed with PTSD in my 20s due to prolonged sexual abuse in my home during my teenage years. I believe this took my Central Nervous System to the brink. I believe stress from my divorce at 34 pushed it over the edge. The onset was extremely rapid, however, I can tell you the exact day everything changed. I collapsed on the floor walking to the bathroom and nothing was ever the same again. I was diagnosed in less than 3 months, which I know is rare, but I believe it's because the change was so fast and extreme.

Very similar to some people with ME/CFS with their very rapid onset. One guy - a weightlifter collapsed in the middle of a lift - never was the same again. A couple of months earlier he'd been in horrific car accident in which he was uninjured but someone else died. Gotta think that set him up for his later fall.

 

[Cort]

In 1992, I was hospitalized for "viral" meningitis for 7 days. Approximately 4 weeks later I developed Bell's Palsey and then a few weeks later I had severe bilateral parotid gland swelling. Finally an ID MD tested me for Lyme Disease around 5 months after being hospitalized for meningitis. I tested CDC positive and was treated for 3 weeks with IV Ceftriaxone. I was 90% improved and MD said remaining symptoms old resolve with time. I then developed all over muscle pain and was diagnosed with Fibromyalgia in 1993. In 1994 I was diagnosed with "Lyme Arthritis". In 1996 I was diagnosed with Grave's disease. Too exhausted to write rest of my story and will add rest later.

What a story Sharon. How was your health prior to the meningitis?

 

[Kristi]

View attachment 308
A recent study suggests that, contrary to received wisdom, most FM patients cannot identify a precipitating factor that kicks off their illness. About 25% of people with FM could identify a single stressful event but most couldn't.

How did your fibromyalgia start for you? Did it appear to be triggered by anything (accident, infection, surgery, pregnancy, emotional stressor?) or did it occur out of the blue? Were you under more stress than usual at the time or were things going along normally?

I got ME/CFS years before getting fibro but you didn't have that option in your survey.

 

[Karen Lee Richards]

The results of this study surprised me. I've been working with fibromyalgia patients for almost 20 years and I've rarely talked to anyone who didn't have one or more precipitating event they were aware of. For me, it began with mono, which turned into ME/CFS. Then a couple of years later, a serious car accident triggered the fibromyalgia. I'll be very interested to see the results of your poll here.

 

[Cort]

The results of this study surprised me. I've been working with fibromyalgia patients for almost 20 years and I've rarely talked to anyone who didn't have one or more precipitating event they were aware of. For me, it began with mono, which turned into ME/CFS. Then a couple of years later, a serious car accident triggered the fibromyalgia. I'll be very interested to see the results of your poll here.

It may be the population was different - I think the patients came from China or that the study wasn't detailed enough to pick out multiple stressors that accumulated over time.

We're certainly getting a good number of people who sustained one, two or three hits before the big one.

For me with ME/CFS it was 'gradual onset"; by gradual I mean over a month or two but no readily identifiable precipitating events.

 

[Elaine Schoepf]

My Fibro started in 93 after I was attacked by a friends large Staffie and dragged down the hall by the jaw. I took antibiotics for 6 months to deal with infection from the bites. Pain began during the three months after the attack. Then fatigue and strange neurological things like suddenly not knowing where was for a moment (fun when driving!) and neuropathies. I had remissions and flares and seemed to be getting gradually better.

(I wonder though if it wasn't just a really my first big flare as I had a virus in grad school 8 years before and had weakness and neuropathy, in my arms and legs for a year or two. )

Until in 2006 I had another virus that knocked me on my heinie for 6 weeks - flat on my butt sleeping mostly. never have recovered from that. really more like CFS than fibro since then - exercise intolerance and fatigue are my worst issues now.

 

[Diane in Western New York]

My FM began in 1950, the result of medical treatment that saved my life at the age of seven. I had infected tonsils and, because it was the "polio season", the doctor wanted to delay taking them out. The delay resulted in the infection going systemic with kidney failure. I had all the symptoms of polio, very high fever, stiff neck and unable to walk, so they did a spinal tap and discovered there was no polio, but I had nephritis. They gave me penicillin shots every two hours for two weeks in the hospital and then penicillin pills for six months at home. I was on complete bed rest, not even allowed to go to the bathroom for six months and on a special diet of no protein, no milk, no salt, just restricted fruits and vegetables that were the consistency of baby food. The therapy that saved my life set me up for a lifetime of coping with the results: multiple allergies, digestion problems and muscle problems. I was diagnosed with Fibromyalgia, Irritable Bowel and Myofascial Pain finally in 2000.