You’re in pain, yet people don’t believe you. Little wonder depression is so common among the close to one million Canadians who suffer from fibromyalgia.

Ten years ago, Joyce Flannery awoke to a feeling of soreness in her right shoulder and back. The next day it moved to her left arm and the back of her neck. She didn’t know what was happening to her body. Flannery gritted her teeth and tried to work through the pain while doing her job as a receptionist handling more than 500 calls a day. She tried massage therapy but her symptoms continued to worsen. Soon the pain overtook her life.

Making the diagnosis
To be diagnosed with fibromyalgia, you must have:

Widespread pain for at least three months

Pain above and below the waist, and on both the left and right sides of the body, including the spinal region

At least 11 (out of a possible 18) distinct sites of deep muscle tenderness that hurt when pressed firmly (these include the side of the neck, the top of the shoulder blade, the outside of the upper buttock and hip joint, and the inside of the knee)

“By 10:30 a.m., I would be dragging my feet, recalls the 67- year-old mother of five from Gatineau, Quebec. “I would feel chilled, and have soreness jumping from one place to another on my body. I was forgetting things because I was in so much pain, I couldn’t think. And I was so tired. My boss would ask what was wrong with me, and I just didn’t know.”

She wasn’t aware of it then, but Flannery was suffering from fibromyalgia, also known as chronic widespread pain, which is like an invisible illness because sufferers may appear perfectly fine on the outside while experiencing intense pain on the inside. Long
misunderstood, it has been discounted and dismissed for years as a product of the patient’s imagination or hypochondria.

Like many people with fibromyalgia, it would take Flannery years before she got a proper diagnosis. She saw several physicians and was variously diagnosed with back problems, neurological pain of unknown origin, and, when she could no longer move her arm, with adhesive capsulitis (also known as “frozen shoulder”) and bursitis. Eventually a rheumatologist identified the real problem.

“I went through a lot of anxiety before they discovered what I had. When I was diagnosed, I was so relieved to know there was a name for what I was experiencing.”

Living with fibromyalgia can be like living under a cloud of despair, in part because of the disbelief that sufferers may encounter— even among health professionals. There are some physicians who don’t consider fibromyalgia to be a bona fide illness (even though the diagnosis is recognized by esteemed medical groups such as the American College of Rheumatology and the U.S. Food and Drug Administration). Friends and family may also be disbelieving. “You can go to work with your makeup on and all dressed up, and be in the most awful pain—but people don’t believe you don’t feel well because you look fine,” says Flannery, who says her boss was unsympathetic about her condition, which caused her to eventually leave her job.

Women account for about 95% of those affected by fibromyalgia. Most are diagnosed during their 40s or mid-50s, although many may develop vague, sometimes flu-like symptoms and tiredness during their mid-30s. Common symptoms include pain, fatigue and sleep and mood disturbances. It’s not surprising that people with fibromyalgia are
at high risk of depression and anxiety. The challenge of living in constant pain, coupled with the fact that people may be skeptical or disbelieving about your diagnosis—can be extremely discouraging and isolating.

What to call it?
While fibromyalgia is the commonly accepted term to describe this widespread musculoskeletal and fatigue disorder, some experts believe the term is a misnomer. Montreal rheumatologist Mary-Ann Fitzcharles believes the label “chronic widespread pain” is a more accurate description of this condition. “ ‘Fibro’ means there is some fibrosis, or abnormality in the tissue, and in fact, in biopsies of
these patients the muscles are normal. ‘Myalgia’ [muscle pain] means there is some abnormality within the muscles, and there is none. The term we’re beginning to use today is chronic widespread pain.”
One of the reasons why a diagnosis can be so difficult is that the symptoms are similar to other conditions, such as reduced thyroid function, arthritis and muscle pain occurring as a side effect of certain cholesterol-lowering drugs. Flannery is a case in point. She had been diagnosed with an underactive thyroid before developing fibromyalgia and the extreme fatigue she felt was a symptom of both conditions.

What causes fibromyalgia? No one knows for sure. According to The Arthritis Society of Canada, a number of factors might be involved with triggering fibromyalgia, including accidents and injuries, surgery, other illnesses or infections, emotional trauma and stress.

It’s all in your head
While the condition manifests itself in physical symptoms, fibromyalgia may be a result of a pain processing disorder in the brain. “It’s probably a combination of excessive input of sensitivity from the body to the brain, some abnormality in the way the brain and spinal cord process the input, and a reduction in the body’s natural ability to dampen down the pain mechanisms,” says Dr. Mary-Ann Fitzcharles, a professor of medicine in the division of rheumatology at McGill University in Montreal. “Patients used to say, ‘No one believes me—they think it’s all in my head.’

Now we know that yes, it’s in your head— not because you’re crazy, but because there is a dysregulation in brain chemistry.” Although there’s no cure, an improved understanding of the condition means relief can be found. “If we address the four major symptoms—pain, sleep disturbance, significant fatigue, and mood disturbance—using multiple interventions, which might include non-drug approaches such as psychological counselling, as well as a range of medications including anti-epileptics, anti-anxiety and sleep medications, patients begin to discover what works and often we’re able to gradually withdraw or reduce some medications,” says Dr. Fitzcharles. At least 50 to 60% of patients improve considerably over time and are able to control their symptoms, improve their ability to function, and get on with living their life.

Taking action
It may be difficult to take action to improve your health when you are feeling tired and miserable, but you must, urges Dr. Fitzcharles. Those who are most successful in controlling fibromyalgia are people who can identify specific goals (whether it’s preparing four dinners a week or hiking with their kids once a week) and work towards achieving them.

Adopting a healthy diet and engaging in physical activity is central to managing pain. Exercise is especially helpful for pain sufferers because it helps release neurochemicals such as endorphins, which help to inhibit pain. Endurance exercises such as walking, swimming and cycling can help strengthen the body and provide energy. “I really encourage patients to work up a sweat for 20 minutes at least three times per week, doing something they enjoy that becomes part of their lifestyle,” says Dr. Fitzcharles.

There are a number of effective drug treatments as well. These can address those symptoms that are most distressing for the patient. For some, like Flannery, extreme anxiety contributed to increased pain so managing the anxiety became paramount. For others, ongoing sleep disturbances might be the problem that exacerbates their symptoms.

Many of the treatments that are effective for fibromyalgia were originally developed as antidepressants. That’s because neurochemicals, such as dopamine, serotonin, and norepinephrine, are involved in depression, anxiety, and pain. Tricyclic antidepressants were the first antidepressant treatments used for fibromyalgia. While they remain the gold standard for treating fibromyalgia, they can cause side effects such as drowsiness, a very dry mouth, constipation, and difficulty passing urine. These effects occur less with newer antidepressants, which work on the same neurochemicals in a more targeted way. Ongoing studies of one of these drugs, duloxetine (brand name Cymbalta), may prove it will be more effective for fibromyalgia than depression. Pregabalin (brand name Lyrica), originally developed to prevent epileptic seizures, is also used specifically for fibromyalgia. While it provides effective pain relief, it also has some potentially significant side effects, including weight gain and swelling, as well as dizziness and sleepiness.

Finding the right medications can take years of trial and error. Over the course of the past decade, Flannery has been on 23 different drugs, including various antidepressants and pain medications. Today she’s down to just a handful, including her thyroid medication, acetylsalicylic acid (ASA) and the anti-anxiety drug lorazepam. “Be careful about taking a lot of pills,” she cautions. She also advises walking and exercising regularly, using a hot bath or heating pad to relieve pain and getting enough rest. Massage therapy combined with hot mud packs have also proven to be an effective treatment for her. Most helpful of all was enrolling in an eight week pain management course that allowed her to share her experience with others who have fibromyalgia.

“I feel better now than I’ve felt for a long time. It’s a learning process—learning to deal with it, to accept it, and most importantly, to get the help you need, whether from family, friends, or a support group,” says Flannery. “I’m still sore, but I think it’s all about acceptance, and trying to make the best of things. You’ve only got one life, and you have to look at it positively.”