How a disorder starts can be very informative. A rapid onset illness associated with swollen lymph glands, muscle aches, fatigue and fever so often marks the onset of a short-term infection that rarely do doctors attempt to identify the precipitating pathogen. Other beginnings are more obscure. The onset of complex regional pain syndrome (CRPS) usually starts with a wound, but research suggests an infection occurring before the wound appears to be necessary to prime the system to respond bizarrely to the wound.
What got the ball rolling in fibromyalgia? For many people – maybe nothing…
Fibromyalgia seemed a lot simpler. Most cases were probably triggered by a physical trauma (eg car accident or surgery) or infection. A recent study, however, suggested that the most common road to fibromyalgia involves neither a physical trauma or an infection.
The most common pathway to FM, in fact, doesn’t involve anything discernible at all. For most people with FM, their FM appears to have descended like the dusk falling – slowly and surely and for no obvious reason. It just happened.
The study looked at almost 1,000 patients, 94% of whom were women. Despite the consensus that a traumatic event – either physical trauma or infection – usually kicks off FM, only 27% of patients reported an obvious precipitating factor. Of those 22% reported experiencing some sort of physical trauma (e.g. motor vehicle accident), while 5% reported an infection was present. Seventy-two percent reported no obvious trigger at all.
The most common physical trauma reported was a car accident (6%), followed by surgery (5%) and childbirth (3%). When an infection did appear to trigger FM it was usually a respiratory infection. Only 1% of FM patients reported having an infection associated with Epstein-Barr virus.
Emotional traumas such as the death of a family member or the loss of a job – the types of things that often tip some people over into depression – rarely triggered FM (@3%). That’s an intriguing finding given how susceptible some people with FM are to the effects of emotional stress.
The type of trigger may have some impact on later health. People with infection triggered fibromyalgia had worse quality of life scores but better emotional health scores.
The study deepens the mystery that is fibromyalgia. Physical trauma or infection have been supposed to precipitate FM by triggering a cascade of responses that ultimately jumble the system up. While it’s not clear how it happens it’s fairly easy to envision a rapid and traumatic event such as surgery or a car accident triggering an alteration in the pain response system. Similarly, it’s fairly easy to envision an infection throwing the immune system or a stressful event throwing the immune or endocrine systems out of whack.
For most of the FM patients in this study, however, FM appears to have just happened.
Take the Poll
How did your fibromyalgia happen? We dig deeper in a poll on the Health Rising Forums. Take it and let us know here.
Thus far the numbers are flipped in our poll; just 25% of poll respondents report nothing unusual occurred at the time of onset. We’re also asking about gut infections and feelings of being overworked or stressed at the time. Check it out here.
This is news to me. Many articles regarding fibromyalgia have stated over and over again that there is a trigger. So, this is a very interesting report. I was diagnosed with fibromyalgia shortly after being diagnosed with RA in the mid 80’s. I have had symptoms get worse when under extreme stress but I have also had worse symptoms without a trigger, or at least not one that I could put my finger on.
I did have a trigger. I was first diagnosed with Chronic Fatigue Syndrome and was determined to come back from that. Not knowing any better, I started walking around an indoor track. Before CFS, I walked a lot and so this track was a fraction of what I had been used of doing. While going around the track, I became very weak , short of breath and very shaky. I could hardly drive myself home as I felt like I was going to pass out. When I got home, I collapsed into bed where I stayed, in a very deep sleep (as in my husband could not wake me up in order to get ready for bed etc.) for three days. I remember him calling me, gently shaking me….but it seemed so far away — almost like when you’re coming first waking up from surgery. I just could not wake up. When I did eventually come around, I was in so much pain all over my body. I could barely walk to the bathroom and could not go down stairs at all. I was bed bound for a month because of the pain. I knew I had to get back to the Dr., so with lots of help I went in to see him. It was then he further diagnosed me with Fibro.
I believe my fibro came on slowly. Having said that, I had a bout with mononucleosis when I was 15 and my health began to decline following that infection. At 18, I experienced painful endometriosis followed by ovarian cysts (from endo) which resulted in surgical removal of one and half ovaries at age 23, a reoccurence of endo 2 years later resulting in a complete hysterectomy at 25. My health issues continued, with fibromyalgia symptoms really becoming pronounced following the surgery and marriage at 28. Then diagnosed with celiac disease at 40. Ten years ago, prescribed Nexium which I was severely allergic to (one of the 1% of the population) and which required two trips to the ER for swelling tongue, etc. Since then my health has taken a real nose dive with multiple food allergies (histamine intolerance), heat and sun intolerance (have to keep the house at less than 70 degrees at all times or my face/ears swell, get very red and hot and a feeling of unwellness descends on me). That coupled with eczema on my hands, swelling in my feet, and other muscle complaints, and an inability to lose weight, pretty much rounds out the picture as of today.
Note: If you have FM, I recommend you only take meds if they are really needed! I don’t normally take medications, but my doctor assumed my coughing was reflux and prescribed that nasty Purple Pill. Turns out it wasn’t reflux but a milk allergy that went away when I quit consuming dairy products. Has anyone else had mononucleosis or endometriosis prior to
or after symptoms of FM started? It would be interesting if mono was the causative factor
in FM…Despite all the problems I’ve experienced (and continue to deal with) life is good!
I have a good man in my life and try to keep a positive attitude about what I can contribute going forward. Good luck to you all and may Blessings Be.
In ’93i was diagnosed with hepatitis. then they figured it was just the worst case of mono they had ever seen. For 6 months i could hardly eat. i was horribly anemic. and my liver almost shut down. Then my immune system all but shut down and i got strep throat 5 times in one year. Plus the flu 3 times and then any other bug that any one brought in. i was diagnosed with CFS then finally with FM. All of this was after a failed adoption. we had to give back a baby after watching her birth and having her in our home for 2 months.
I also believe there is a contajon factor. If someone is fighting anything else. My best friend was diagnosed a couple months later when she found out that she had undiagnosed type 1 diabetes. then my mother and husband were diagnosed after having major surgery.
Beverly, your comments remind that in the past I had a liver infection and strep throat as well. It may just be an underlying immune dysfunction that is expressed by all these infections and illnesses. If a genetic immune dysfunction, it will continue to be a very difficult set of illnesses to resolve. I think that the chemical overload we as individuals and the planet now bears, may play a part in all these immune deficiency diseases.
Lori, I also had endometriosis and lost an ovary at 22 and all the rest went at 32. I had a horrible time getting drs to believe I was in pain even after the first surgery! An awful disease! I had daily headaches start after that and kind of attribute that to my main fibro start, although I had it earlier- but it was easier to handle. I also have a cough that they treat as asthma and refux…always have felt that also is a fibro thing.
Lots of gynecological problems before and/or during ME/CFS…..we’ll have a blog on that soon. They may be a true pre-existing risk factor (unlike depression, anxiety)..
I have consistently believed and stated that my “trigger” was chronic stress that I stupidly put up with for years.
It is not a single event – it is day after day, week after week, month after month, year after year, dragging yourself through a daily mini-hell of some kind with “flight or fight” syndrome rampaging all over you 100 times a day.
I have also consistently believed and stated that my fibromyalgia crept up on me like a frog in water being raised to boiling point. I just gradually got worse and worse with muscle pain and stiffness and POTS-type symptoms.
I was super fit while all this was happening to me, and prided myself that daily intensive exercise would keep me capable of handling the stressful job. There were other stressors in my life too but the job was the major one. Going off the pace in my exercise with pains that never went away, was the first problem; and massage therapy didn’t seem to achieve anything. In fact I just steadily got worse.
I did not start to improve until I had quit the stressful job and got established (which took years) in a livelihood that I enjoy. I also have had to adopt a “give them both barrels between the eyes” response to people close to me whose attitude (fibro is all in the mind, yadda, yadda) is hurtful. I tell them they need to look a bit closer at their own basic humanity.
I would definitely argue that fibro is not “triggered by a single event”, but its onset finally begins when the body and the nervous system has been subjected for too long, to chronic stressors that eventually it cannot cope with. I think there is a connection with body fluid management, as this was another problem I had exactly at the time my fibro would have been starting without me being aware. I was urinating excessively and yet showing all symptoms of dehydration. No electrolytes would help retain the water instead of peeing it straight out within 20 minutes. Mainstream medical tests showed “nothing wrong”.
I think a vicious circle is set up at some stage where intersticial fluid movements and fluid supply to the muscles is disordered, perhaps as the result of tensions from stress, and the body starts to adopt coping mechanisms that accelerate the deterioration in muscles, myofascia and the whole Orthostatic system. Very early on in my deterioration I started getting POTS type symptoms from merely squatting, which I had been perfectly able for prior to that, as a trim and fit guy.
My pain, according to my mother, started right after I had a bad case of the measles at three years old. I had an active childhood even showing horses in my teen years; however, the pain was always there. We called them rain pains and of course the doctors could tell us nothing except that they were probably growing pains. I am 58. I am still having the same pain only now it has a wonderful group of other symptoms that go along with it. I have had so many injuries going along with the involvement with horses, at least four auto accidents in my life, 10 or more surgeries – right now there are three surgeries they tell me I need, I am a survivor of horrific child abuse starting at a young age up until the age of 11, I was involved in danceline in high school which accounted for me drops on the hard floor, and the list could go on and on. I really started being disabled by the pain after my third back surgery in 1998. I have been on disability and unable to work since 1998.
Both ME/CFS and fibro started for me after six months of relentless stree followed by a simple knee operation. Yet…I was stressed years before when a friend killed himself and also survived an appendectomy and a hysterectomy with no health issue at all.
My Diagnosis was FMS/CFS and yes I had Mononucleosis and severe Endometriosis prior to this diagnosis, I believe these were the triggering factors for me as the really tire you out and mess up your sleep etc and the trigger Cytokines which have been linked to ME.
Cort, I tried to do the survey, but the link took me to the results of the survey, rather than the actual survey itself.
I see it’s doing that but I don’t know why…maybe.refreshing the page would bring the survey back (??) Sorry about that.
I had multiple triggers – which created the perfect storm. But the most prominent trigger was getting amalgam fillings. No ventilation, no precautions, etc. Some people can’t eliminate mercury well.
same problem as last post – unable to do the survey. Mine started along with the “flu” that never left me back in 1986. I also noticed in comments that someone had polycythemia……..I’ve heard of several others in my immediate community at that time as it was something found in me as well. As soon as I became severely ill, it totally disappeared………….go figure!!! Too many strange events and it all has to fit together somehow – still waiting!!!!!!!! I kept going to a chiropractor for the pain and was told I had “tennis elbow”???!!! I was going twice weekly at that time for some pain relief. Makes me wonder if it actually made things worse.
Epstein Barr started it and a very stressfull lige with for sick children.
A number of potential triggers over the years and ascribable symptoms are possible to identify in my case but after reading other people’s experiences above I began to wonder if a human tendency to look for patterns is hiding the bigger picture.
Perhaps all, some or none are the triggers but I doubt that any are the cause. After feeling that my fibre/ME/Lyme is somehow bigger or at least more complicated than each of these diagnoses and to have all of them at once seems unlikely I’ve rotated back to my original theory which is an acquired immune dysfunction. Whether it has been inherited from my mother or I have acquired it myself I don’t know. The depth, range and severity of illness can only be explained by a catastrophic dysfunction of this nature.
C-section 1982 at the age of 38. Not one decent day ever since. Eat well and do things in accordance with helping me, but no success. Doing LDN and patient at Nova S. Saw Dr. Klimas for years and now they have me with Dr. Rey. Immune system is showing IGG deficiency with subclasses also. Cannot stop from catching every virus that comes near me. Just need some relief.
I was diagnosed after contracting chicken pox at age 28, followed by mononucleosis two years later which relapsed one month after I got married. I know the fibromyalgia was triggered by these events. I was fortunate to have a doctor familiar with fibromyalgia at the time.
I have CFS but not fibromyalgia I wish there would be more recognition not just of the two conditions but that they are separate conditions. many people have cfs and fibro but not everyone has both. I have cfs and I don’t even have any widespread pain,just constant flu like feeling, headaches, fatigue, sleep disturbances, orthostatic intolerance, and worsening of symptoms following exertion but luckily no widespread body pain. CFS is enough to deal with, cant imagine having fibro on top of it
Cort, how many triggers can one person have; I have had symptoms back through childhood!! (I also could not take survey)
1. Hospitalized as preschooler (1955) for sever fever (back when you were packed in ice)-“growing” pains began and I lived on Absorbine Jr.
2. Parents’ ugly divorce produced IBS (doctors called it the flu every holiday, LOL) and sleep issues at age 12. Mono shortly after.
3. Front and rear end car accident age 17- received no treatment at the time. 2nd & 3rd vertebrae twisted
4. College and continued parent stress increases IBS forcing hospitalization
5. Difficult childbirth & pregnancy induced allergies increased IBS for another hospitalization-bagan extreme sensitivity to chemicals and any fragrance
6. Business (owned my own) related stress-increase pain, sleep issues, fatigue, deprassion-diagnosis of F/CFS age 48-have not worked full-time for 7 years
7. PTSD from IRS audits, illnesses & death of both mother, stepmother and personal assistant in a 2 year period-finished me off!!
Dr. Lerner treating me since Jan 2014 for persistent HHV6.
For me the onset of aching joints and muscles and sudden fatigue spells started when my Dr pres cribed 80mg/day of simvastatin – a huge dose. I assumed then that it was mitochondrial damage seeing how statins block the production of coenzyme Q10 and dolichols. However, supplementing with ubiquinol (coQ10) didn’t help
I had reoccurring strep throat as kid… Sinus issues now.I had been very active ,worked, raised twins and a son. Lived in a stressful and abusive relationships,most were verbal,but physical too!
I had a fall that required knee surgery,so within a month I feel apart,energy was gone,wanted to sleep,no drive to do anything. My son who had been 15 at the time helped me most day’s.
I’ve changed many things in my life to adjust to feeling like a loser.I try my earnest to keep sugar put of my diet,eating paleo, gluten free,and just enough dairy for my vitamin D…I also take cq10 and magnesium. Do a detox once a week. I have noticed I’m having better days. Sleep is so very important too! I will sleep 6 hours at night and then a 3 hour nap. My energy is coming slowly but it’s coming.
All I know is I know my body better than anyone,so I know I have medical issues, more chronic than anything of course. Pain is daily,but I manage the best I can. I’ve had countless test for everything else and all come back fine.I just pray a cure is found soon.
I guess it all started in my case after my traumatic pregnancy. At 27 wks I was diagnosed with pre-eclampsia and was admitted to hospital and wasnt discharged till after my baby was born at 35 wks due to emergency c section as i then developed eclampsia. I spent two months in hospital with blood pressure that kept on rising as high as 180-140 until my whole body starting failing and they decided to deliver. Besides the whole breaking down of my body the whole experience was traumatic. Then following that my marriage went downfall and so did I. It led to separation 5 years after the birth of my dsughter. It was all very stressful and I was alone struggling life with my daughter. After all this it was like I just could never regain strength. The symptoms developed slowly and it took many years coming in and out of hospital for me to be diagnosed with ME and FM. i also have 3 slip discs in my neck probably from a bad fall I had had as a child.