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fibromyalgia: living with mystery pain
what causes fibromyalgia is unclear, but theories range from physical trauma and severe psychological stress, to gut microbiome changes and adverse childhood experiences.
may 4 2023
6 minute read
fibromyalgia affects two to five per cent of canadians, with women being four to nine times more likely to develop it than men, for reasons largely unknown. getty
when suzy groenewegen couldn’t shake a cold for nearly eight months, she assumed that, because she worked at a school, she was picking up every germ the kids brought through the doors. but then she developed a rash across her face that looked alternately like eczema and blisters. on top of that, she began getting urinary tract infections every month.
“at the time i didn’t connect it to anything chronic; i just thought i was having a crappy year,” says groenewegen, who lives in fort mcmurray, alberta. that crappy year extended into many years, as other symptoms, including extreme fatigue, irritable bowel syndrome, and leg pain, began to pile up.
she says the first doctor she consulted was not particularly concerned and told her she had arthritis and suggested physiotherapy. when that didn’t help, she saw another physician who recommended she see a rheumatologist. but she was denied an appointment twice.
“they just don’t have the time,” she says.
but her new family doctor did take the time, and tested her on the tender point score , a pain scale that checks 18 pressure points on the body (the american college of rheumatology no longer uses the exam). she responded with pain to 13 of those points, and, after further testing, including family history, blood tests and mri, was finally diagnosed with fibromyalgia.
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according to the fibromyalgia association of canada (fac), the condition causes chronic, widespread musculoskeletal pain across every part of the body. it affects two to five per cent of canadians, with women being four to nine times more likely to develop it than men, for reasons largely unknown (some researchers theorize it could be related to genetics or hormonal changes).
“we’re finding more and more sex differences, and not just that females are a bit more sensitive to pain and males are a bit less sensitive to pain, but differences in the way the biological mechanisms work,” says dr. jeffrey mogil, who is not a specialist in fibromyalgia but studies pain at his mogilab at mcgill university. “[these are] much broader, robust and more fundamental differences than expected.”
fibromyalgia: causes and effects
unlike arthritis, which is inflammation of the joints and surrounding tissue, fibromyalgia does not cause permanent damage to muscles, bones or joints. it usually starts as a dull ache in one area, then after a few months or years it begins to affect the whole body. there can be concurrent conditions as well, as groenewegen discovered. people with fibromyalgia often suffer from fatigue, irritable bowel syndrome, migraines, bladder control issues, and sensitivity to light. mental and emotional symptoms can include memory problems, anxiety, stress, insomnia and depression.
the cause is currently unknown, but theories range from physical trauma to severe psychological stress to alterations in the gut microbiome to adverse childhood experiences to pain memory. a child exposed to prolonged stress could have an abnormal response to danger, stress or pain later in life.
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“we don’t quite understand this yet but it is pretty clear that [some] people conceptualize chronic pain as a memory issue,” says mogil. “it’s not so much that the pain is still there, but rather that the memory of it hasn’t gone.”
modern medical tools have fortunately shed new light on fibromyalgia.
“thanks to new developments in diagnostic tests, functional magnetic resonance imaging of the nerves, spinal cord and the brain, we discovered we have a pain system, which everybody is born with,” says dr. andrea furlan, a physician and scientist at the institute for work & health in toronto, as well as the kite research institute, who studies chronic pain. “and fibromyalgia is a disease of the pain system.”
furlan compares this pain system to a smoke alarm in a house, which is designed to alert you to a fire. but if there’s no fire and the alarm goes off constantly, it’s malfunctioning. in fibromyalgia, where a person feels pain everywhere, 24 hours a day, the pain system is also malfunctioning.
is there treatment for fibromyalgia?
once she was finally able to put a name to her pain and other symptoms, groenewegen began the cycle of treatments — which she mostly developed herself.
“you have to do your own research and ask your doctor what they think because they don’t often know what to prescribe,” she says. her treatment has run the gamut from antidepressants that tamp down the part of the brain that responds to pain, to opioid agonist medication (usually prescribed to treat opioid addiction) to calm the central nervous system, to sleep aids.
furlan, who sees patients at the toronto academic pain medicine institute, but with a wait list of many months, says treatment should be multi-faceted, beginning with retraining the pain system’s abnormal perception of pain. to do that, she uses anti-inflammatories like ibuprofen and topical treatments such as lidocaine, in conjunction with mind relaxation strategies to manage stress and anxiety and dissociate from the pain, along with body movement.
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“i became so ill i was unable to stand for more than a couple of minutes because my blood pressure would plummet. it was horrible. i secretly hoped i wouldn’t wake up the next day,” says suzy groenewegen. supplied
mind strategies, she says, can include cognitive behavioural therapy, mindful meditation, relaxation and breathing techniques. body movement can include stretching, strengthening and aerobic exercise, but it’s important to start low and slow, to allow your body to ease back into it if you haven’t exercised in a while. and while furlan acknowledges that movement can cause pain flare-ups, it’s an important part of rehabilitation.
“the less you do the less you want to do and you become more depressed, then more isolated and lonely and anxious, which will increase the volume of pain,” she says.
a healthy diet is also important.
“a lot of my patients are malnourished, even though they are normal weight or overweight, because they are lacking nutrients and vitamins due to poor diet,” she says, adding that because fatigue is a major symptom of fibromyalgia, getting enough sleep is important.
the emotional toll of living with fibromyalgia
besides the physical impact, the emotional toll of the disease can also be devastating for some, with depression and anxiety sometimes overtaking their lives.
“it was the worst at the beginning, and i went for counselling,” says groenewegen. “i was very sad and i cried a lot. i was devastated at what my life had become and how much was taken away from me. i became so ill i was unable to stand for more than a couple of minutes because my blood pressure would plummet. it was horrible. i secretly hoped i wouldn’t wake up the next day.”
groenewegen no longer works full-time because she lacks the stamina, but she volunteers as fac’s awareness committee chair and is a representative for the western provinces. she’s managing much better today primarily because she has educated herself about the disease.
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“you have to pace yourself really well to manage this illness,” she says. “you have to use your energy wisely, because if you don’t you’re going to crash and you won’t be able to get out of bed.”
emerging research in brain imaging to test the hypotheses that fibromyalgia is caused by an interpretive defect in the central nervous system is encouraging, as are many trials that are ongoing. but mogil is cautious.
“the field is littered with failed clinical trials because we’re studying the most complicated object in the known universe, the brain,” he says. “and we’re just starting maybe, kind of, to figure out the relevant circuits. the heart we understand, the liver we understand, the lungs we understand, these are very simple organs. the brain is just a whole other level; we don’t have the slightest idea what’s going on in the brain. the fact that we make any progress at all is consistently amazing to me.”
groenewegen cites lack of funding as another challenge, since it inhibits any larger studies, so her organization relies on research emerging from the u.s., which she says has access to more financial resources.
fibromyalgia canada collaborates with california-based support fibromyalgia , which is rallying capitol hill on may 12, which is national fibromyalgia awareness day, and she’ll be watching the outcome closely.
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“the reality of having any chronic illness is a constant cycle of hope and grief,” she says.
robin roberts is a vancouver-based writer.
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