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SURVEY: What Triggered Your Illness?

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The phrase “no known cause or cure” is a familiar one to sufferers of ME/CFS and fibromyalgia. Neither one of these illnesses has a definitive cause and neither has an accepted biomarker.

While the cause remains elusive, triggers for these illnesses are well known. Patients have reported falling ill after exposure to pesticides, mercury, and other toxins. Injuries, such as car accidents and surgery are often associated with the onset of fibromyalgia. For patients with ME/CFS, many report becoming ill after what appears to be a flu, or other viral infection. And there are numerous others who become ill after bacterial and parasite infections.

The distinction between triggers and causes is important, even if it may seem a fine point. For example, many young people develop ME/CFS after a bout of mono. Epstein-Barr virus was certainly the trigger in these cases, but the chronicity of symptoms may be due to a different virus entirely, or to an autoimmune process. The same holds true for FM. A car accident or surgery may precipitate the illness, but the cause could be, as in the case of ME, neuro-inflammation to due to an infection, repeated physical injury, or various neurochemical imbalances.

Although causes and biomarkers are still being sought, it is important to take triggers into account. Treatment depends, in part, upon the trigger. While the symptoms may be identical, the mode of treatment will be very different for those with chemical exposure than those who became ill after a flu or infection. Ultimately, it may even prove that regardless of the similarity of symptoms, all of these subsets may be classed as different diseases.

Editors Karen Lee Richards and Erica Verrillo are conducting a survey to explore triggers in ME/CFS and fibromyalgia. We would also like to understand what patients themselves think is the underlying cause of their illness. While researchers hunt for causes in the lab, it is worth asking patients what they believe. Patient experience is the bedrock of clinical discovery.

Take the survey HERE.

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6 thoughts on “SURVEY: What Triggered Your Illness?”

  1. IanH says:

    You seem to have missed a very important possible trigger of fibromyalgia. FM is primarily a hypersensitivity illness and it is known that many people who get FM had a history of recurrent pain. This is often explained by the “kindling” hypothesis, in that pain which is recurrent, such as from duodenal ulcer or gastritis, or from IBD, or arthropathy can trigger a hypersensitivity to pain and idiopathic widespread pain syndrome (fibromyalgia). Some even hypothesize that “emotional pain” which is chronic or recurrent is little different from anatomically induced pain and can similarly trigger “kindled” pain, ie. FM.

    Of course, such “triggers” as you have listed cannot act without a genetic predisposition otherwise more people would have FM and the relationship between the trigger event/circumstances would be an obvious cause.

    It is my experience in working with patients with FM for over 10 years that a history of recurrent pain has to be considered as a possible trigger along with all the other possible triggers which you have listed.

  2. leelaplay says:

    When I was filling out the survey, I interpreted the instruction to select what you believed caused the disease to mean that you could only select one. It was only on the last question that I got concerned and felt that we really needed to be able to select more than one believed cause, tried it, and found out it worked. In my case I believe it is a genetic predisposition, a virus (or other assault to the immune system maybe for others), and something that is weakening the immune system that lets the virus get established.

  3. blommie says:

    Emotional trauma going through a bad divorce.Not only blaming my divorce but I am also trying to be perfect,keeping others happy and put myself last.It is important how others feel about me, although I have not a low esteem.My children were in there teens and manipulated to leave to live with the ex. I have been for counseling and remarried and happy.Have been living in back and neck painfor about 20 years. Phisio and pain killers do help some days. The best option I chose was to see a Neuro chirg and all scans showed rheumatism arthritis, but FB in all painfull points also diagnosed.Got 12 cortisone injections and pain block from aneasist spescialist.Was the best for me.A Rissotomy next choice. Please share. I was pain free for about 8 months.Some days not but to stay positive means alot.

  4. janalapel says:

    I believe a combination of factors triggered my “official” illness even though symptoms have been experienced since childhood. Acute Pancreatitis in 1995 followed by gall bladder surgery is believed to be the onset of chronic and severe pain, spasms, disabling condition. When I was still working I simply “pushed through the pain” to continue as an entertainer and broadcaster/writer. When the cost of living required more income than I had energy to keep up with …I opted for moving to a subsidized senior residence and “throwing in the towel” on the career I loved. I simply could not pump enough adrenaline to keep going. However, giving up the creative outlet triggered a sense of loss…more grief…and other financial issues. I am told I am a “sensitive” personality….and I don’t disagree. However…when I tell doctors I am also CHEMICALLY sensitive to prescription drugs…they usually don’t want to deal with me anymore. They put away the RX pad…and shake their head. I am spending my savings on holistic modalities that USED to manage the pain…but the past few months…acupuncture, chiropractic, massage, homeopathic remedies and aromatherapy bring short-term relief for only a day or so. Working on a new yoga program for sciatica…trying to sort out dietary changes (I do not have celiac…according to test results) but I have had IBS since age 12. At age 75…I think they mostly want to “turn me out to pasture”…back to Iowa where I started…but was transplanted to Canada as a “self-imposed exile” at age 35. Armed with FOUR new prescriptions with warnings that seniors may be more prone to the side effects of irregular heartbeat or racing heart…(and I suffered with that for years …as well as panic attacks) I am not eager to swallow more chemicals!!

  5. latics says:

    I worked for years in an office where i was constantly dusting my desk to remove grit from it. More so when the window had been open. Six of us were constantly ill and we were sent for many tests and to many consultants. During one set of tests all 6 of us showed Chlamydia in our blood tests. A few years later it was acknowledged that the grit contained faeces from pigeons that roosted on a ledge above our office.
    Years later I found some research on diseases caused by pigeons, and how many pigeons were infected with Chlamydia, and how this could be a cause of some conditions like FM.

  6. isabelsunshine says:

    Fibromyalgia in my case was triggered in a classical way. I stumbled on top of a staircase, rumbled down, hurt my ribcage badly, but no broken bones.
    And THEN: I could not sleep for weeks, backpain and muscle-pain started , became worse and worse.My then doctor sent me to a fibromyalgia-center in Munich, where fibro was diagnosed.The then prescribed Cipralex , which I took for MANY years ,had a very paradox effect: It worked like a narcosis or strong sopoforic.I stopped taking it after I got CFS and many other problems on top.
    Now, after almost 20 years am a wreck and officially there are no more therapies.

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