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For years, the medical community didn't believe fibromyalgia was real. But over the past decade, the condition has slowly gained acceptance. And while scientists still don't know what causes it, new treatment options are helping patients lead normal lives.
No one is the same when it comes to fibromyalgia, says Paulette Zielinski, a Montreal native who was diagnosed with the condition in the early 1990s.
The chronic disorder, which has been puzzling doctors for decades, can cause fatigue and, ironically, sleep problems, plus memory and mood issues. But there's one symptom patients can all agree on: pain.
Paulette was 50 with a type A personality and had been commuting to her high-stress job in the paper industry when she succumbed to what she thought was a bad case of the flu. Then, her muscles began to ache—and the pain didn't go away. "All I knew was that I hurt," she says.
Her family doctor and specialists were mystified. "Doctors at the time thought it was a mental diagnosis," she says. Paulette was prescribed antidepressants, but her symptoms didn't improve. In fact, they worsened, then intensified when her work situation became more stressful.
"I got so dizzy I couldn't move," says Paulette. She was forced to get a note from her doctor saying she was burned out. But instead of giving up, she spent months going from doctor to doctor, unsuccessfully seeking answers. It was only when she ended up in a neurologist's office, two years after first experiencing symptoms, that Paulette finally got a diagnosis: fibromyalgia.
After gently touching different parts of her body known as tender points and witnessing her wince in pain, he told her, "I think I know what you have." Paulette was relieved; she finally understood why the antidepressants hadn't worked—it wasn't a mental health issue—and why she felt so much worse when she was stressed out, as stress can exacerbate fibromyalgia symptoms. But there was no clear treatment path for the condition doctors were still beginning to understand. The neurologist had solved the mystery, but he could only refer her to a rheumatologist, who handed her a pamphlet on fibromyalgia. Paulette recalls thinking, I have a diagnosis, but I don't know what to do about it.
That's because fibromyalgia has become accepted as a valid medical condition only in the past decade, says Dr. Mary-Ann Fitzcharles, associate professor of medicine in the division of rheumatology at Montreal's McGill University, who vividly remembers the days when fibromyalgia wasn't considered an acceptable diagnosis. "Twenty years ago, the question was, 'Is it real?' " she says.
Why did it take so long for the medical community to take fibromyalgia seriously? "The complaints are purely subjective. There is no single objective measurement—no blood test, no single test—that diagnoses this," says Dr. Fitzcharles. Instead, doctors rely on patient reports of diffuse muscle pain, a "brain fog," migraines, irritable bowel syndrome–type complaints, sleep disturbances, menstrual pain and tingling of fingers and toes. Even great doctors might not make the connection, or they may feel reticent to offer fibromyalgia as an explanation for a patient's complaints, which is why getting a diagnosis often comes down to how much tenacity a patient possesses. But as time has passed, more doctors have been exposed to patients with fibromyalgia symptoms—and more research into the condition has identified better treatment options.
Search for the cause
Though fibromyalgia affects more than 500,000 Canadians—approximately two percent of the population, according to The Arthritis Society—and most commonly strikes women in middle age, we still don't know what provokes the neurological system to malfunction, changing the way the brain processes pain. Research has legitimized the condition, though it's still early days when it comes to studies on causes, risk factors and treatment. Dr. Fitzcharles says that, for some people, there might be a genetic component, so if someone in your family has it, your chance of developing fibromyalgia increases. A severe viral infection, chronic stress or even a period of intense stress can also trigger the illness.
Dr. Pamela Cuddihy, an anesthesiologist specializing in fibromyalgia and owner of the Fibro Pain Clinic in Bolton, Ont., says that muscle biopsies have shown that mitochondria—or powerhouses of cells that fuel muscles and ensure that they perform—are in shorter supply in people with fibromyalgia, leading to increased muscle fatigue.
And it's that lack of energy in addition to pain in the muscles and soft tissue that's also a hallmark of the condition. Nikki Albert was 20 when she began experiencing severe fatigue, pain and insomnia. "I was trying to keep up with people my age," says the Edmonton-based woman, now 40, who blogs about fibromyalgia at brainlessblogger.net. She ended up staying in while her friends engaged in late-night study sessions or, even more disappointing, went out partying. "I just couldn't keep up."
After undergoing tests for lupus, a chronic autoimmune disease, Nikki made an appointment to see a rheumatologist, who told her she had fibromyalgia—a diagnosis her father had received at age 35. She has spent the past 20 years being her own advocate, handling flares and periods of remission and trying to find what works best to treat her symptoms. She meditates, routinely exercises and sees a psychologist who's helping her regulate the pain mentally. She also takes supplements, such as B12 vitamins and magnesium, and has been prescribed medication to help her sleep. "As long as you pace yourself and moderate things, you can manage it pretty well," she says. "If you don't pace yourself, it comes back at you."
At the moment, there's no magic bullet to relieve fibromyalgia, a function of the disorder's relatively recent acceptance by the medical community and still-preliminary research. "There's no new medication on the horizon," says Dr. Fitzcharles. Instead, patients and their doctors need to take an individualized approach to treating the condition, often through trial and error.
"The essence of all treatment is self-management. Know how to pace yourself, how to decrease stress and what your triggers are," recommends Dr. Fitzcharles. She believes exercise trumps all other approaches. "Physical activity has the strongest evidence for effect," she says. But "it must be a physical activity that's comfortable for the person to do." She favours tai chi and says meditation is an effective strategy to help manage pain. Dr. Cuddihy tells her patients to start with a small amount of aerobic exercise each day, be it walking, cycling or swimming, and to work up to 30 minutes daily, if their stamina allows. "It's about keeping within their current ability and building on that," she says. She also counsels her patients, most of whom are women "who do everything all of the time," not to overdo it, especially on good days when their symptoms are minimal. "Otherwise, it's going to be a prolonged recovery."
Managing sleep is also a big part of fibromyalgia. Because nonrestorative sleep has been implicated in the condition, Dr. Cuddihy often prescribes drugs to help patients get enough rest.
There are only two medications approved by Health Canada for the treatment of fibromyalgia: Cymbalta, an antidepressant that, for some people, delivers an energy boost, and Lyrica, an antiseizure medication that can also be prescribed off-label to provide pain relief. Mild muscle relaxants and opioid pain relievers can also be used off-label to manage pain. However, Dr. Fitzcharles says opioids, which 30 percent of fibromyalgia.
What to watch for
Though everyone's case is unique, many people with fibromyalgia experience these symptoms.
- Widespread muscle pain
- Sleep disturbances or waking up feeling unrefreshed
- Fatigue and lack of energy
- An inability to concentrate, also known as "fibro fog"
- Digestion issues such as irritable bowel syndrome or cramping
- Painful menstrual periods
- Numbness or tingling of hands and feet
- Restless legs syndrome
How to get help
Fibromyalgia symptoms often overlap other health conditions. And because of a lack of a definitive test, getting a diagnosis can be tricky. But if you’re experiencing symptoms, you need answers. Here's how to get them.
Listen to your body. If you're in pain and have fibromyalgia-type symptoms, see a physician.
Don't take no for an answer. "Up until now, general practitioners have been insecure about making a diagnosis," says Dr. Mary-Ann Fitzcharles, associate professor of medicine at Montreal's McGill University. If this happens to you, change doctors until you find one who investigates your symptoms.
Be persistent. Montreal's Paulette Zielinski and Edmonton's Nikki Albert both visited numerous doctors before they were diagnosed.
Forget about quick fixes. "There is no one treatment that fixes all symptoms," says Dr. Fitzcharles. "And everyone responds differently."
Take an active role in your treatment. Start a workout regimen, pace yourself and work on sleep hygiene.