Fibromyalgia tends to be misunderstood by the medical community. That’s because there’s nothing straightforward about the illness – no obvious cause, varying symptoms, and no simple cure or treatment.
This chronic condition is characterized by widespread, dull aching in the muscles, ligaments and tendons. It affects men, women, and children, but primarily women between the age of 25 and 50.
Aside from the widespread pain, additional pain occurs when firm pressure is applied to specific “tender points,” such as back of the head, top of shoulders, front sides of neck and upper chest. Other common symptoms include headaches, a decreased sense of energy, sleep disturbances, and varying degrees of anxiety and depression. Living with chronic pain can be exhausting and compromise a person’s lifestyle in several ways.
Why the pain? The prevailing theory is that people with fibromyalgia have more sensitivity to the pain signals in the brain. Doctors aren’t sure what causes fibromyalgia, but it might be brought on by a variety of factors working together, such as genetics, infections or trauma.
Another complex aspect of fibromyalgia is its association with other health conditions. For example, many people who have fibromyalgia may also have depression, endometriosis, irritable bowel syndrome (IBS), lupus, osteoarthritis, post-traumatic stress disorder, restless leg syndrome, rheumatoid arthritis or chronic fatigue syndrome.
It isn’t clear which condition comes first – fibromyalgia or one of the other conditions listed above. “A lot of times it’s almost like a chicken or egg scenario, says Shirley Soleil, founder of the Invisible Disabilities Association of Canada.
Pain takes its toll in other ways, too. As the brain works overtime, repeatedly receiving signals from the nerves, some cognitive dysfunction can result.
Treatment of fibromyalgia centres around minimizing symptoms, usually with a combination of medication and self-care. Some people who have fibromyalgia also find relief from alternative practices such as physiotherapy, hydrotherapy, massage, chiropractic care, yoga, meditation or acupuncture.
Because diagnosis is often difficult (it usually happens only after other illnesses have been ruled out), Soleil recommends keeping a journal of symptoms before seeing a doctor.
“Gather information about medical problems you’ve had in the past, your family’s medical history, medications and supplements you take,” she says. Because historically fibromyalgia patients have been told the condition doesn’t exist, Soleil even recommends coming right out and asking, “Do you believe that fibromyalgia is an illness? Do you accept and understand it and, if so, can you help me?”
There are other changes you can make to ease the pain of fibromyalgia, including:
Exercise. The pain of fibromyalgia forces many people to stop exercising. Those that manage to stay active, however, tend to have fewer symptoms. A physiotherapist who understands fibromyalgia can help you develop a home exercise program.
Soleil, who has fibromyalgia, has found exercise beneficial. Her physiotherapist had her wear a pedometer on her hip for two weeks, then analyzed the results and designed a practical program tailored to her.
“If you pay attention to this type of program it can really help,” she says. “When you’re ill and in pain you might only be able to do five minutes, three times a week. Gradually, you can build on that.”
Reduce stress. The Mayo Clinic, which specializes in various complex illnesses, recommends having a plan to avoid or limit overexertion and emotional stress. While exercise is important, so is learning to relax, through deep breathing, meditation or other means.
Get enough sleep. Allow yourself time to get plenty of sleep at night, but limit your daytime napping. Aim for a steady routine by going to bed and getting up at the same time each day.
Maintain a healthy lifestyle. Eat healthy foods. Limit your caffeine intake. And to take some of the focus off the pain, find time to do something that you find enjoyable and fulfilling every day.