Understanding fibromyalgia

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Publication Date: 
Mon, 2013-10-07

Fibromyalgia also affects young people. Lexi and Michael, for example, were still at elementary school when they were affected. Lexi could get to school for half days. It took her several extra years to complete all the courses she needed to graduate from high school. Michael had about an hour a day available for schooling. Getting to and from school would have used up most of this time, so he ended up being schooled by his parents at home.
Jenny lives alone and her disability income leaves her very little money for food. It takes a lot of her energy and concentration to shop and prepare meals. She often does not feel well enough to eat.

The Community Health Survey shows that fibromyalgia is a serious condition that severely limits activity. Using 2005 data (where the sample size was double that of 2010), we see that

  • 16 per cent of people with fibromyalgia reported they needed help preparing meals (compared to 3 per cent of the general public);
  • 28 per cent needed help getting to appointments or running errands (compared to 5 per cent of the general public);
  • 35 per cent needed help doing housework (compared to 5 per cent of the general public);
  • 57 per cent needed help doing heavy household chores (compared to 12 per cent of the general public);
  • 7 per cent needed help with personal care (compared to 2 per cent of the general public);
  • 8 per cent needed help moving about inside the house (compared to 1 per cent of the general public).

The limitations of fibromyalgia translated into social disadvantage:

  • 14 per cent of people with fibromyalgia reported that they were permanently unable to work (compared to 2 per cent of the general public);
  • 43 per cent had annual personal income less than $15,000 (compared to 29 per cent of the general public);
  • 11 per cent were considered “food insecure,” not having access to an adequate food supply (compared to 5 per cent of the general public).

Perhaps the most significant statistic of all came from a Survey question about unmet health care needs over the past year. In 2005, 26 per cent of Canadians with fibromyalgia said that they had unmet health care needs (compared to 11 per cent of the general public). That figure jumped to 31 per cent in 2010, making it the condition with the highest rate of unmet healthcare needs of all the conditions on the 2010 survey. This isn't a case of a group of complainers. Any investigation of services for people with fibromyalgia would show serious gaps in the health care system. People with fibromyalgia are asking for equitable services.

The lack of health care services for people with fibromyalgia has many implications. The Community Health Survey statistics show that people with fibromyalgia have many visits with health professionals, but it would seem that their illness is not being well managed, leading to greater and longer disability. They have difficulty qualifying for benefits since the health system is often the gateway to social support. This imposes burdens on them, their families, their employers, the health care system, taxpayers, and society more broadly. It is in everyone's best interest to address the problems resulting from fibromyalgia.

In the case of fibromyalgia, it is clear that there is a lack of alignment between the health system and the population that the health system is supposed to be serving. Fibromyalgia is an illness that is widespread and severe, without a realistic strategy for addressing patient needs.

Someone with a more easily recognizable condition, such as chest pain from a heart condition, would receive consistent care in most places within the health system. Someone with chest pains can go to a heart clinic and be assessed immediately, receive treatment and often get access to a fitness program, a dietitian, and psychological counselling. Someone with fibromyalgia on the other had will be lucky enough to have a sympathetic family doctor who works with her in trying various medications. The rest is usually up to the individual.

Access to health care shouldn't be a matter of luck. It is time the health-care system began to fully address the needs of people with fibromyalgia in Canada. At the same time, the system and government needs to support further research into the causes of this debilitating yet poorly understood condition.

See also Living with fibro by Adrienne Kitchin

Margaret Parlor is the President of the National ME/FM Action Network, a charity founded 20 years ago to work on behalf of Canadians with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia. She has had the privilege of meeting many people with these illnesses—people who show remarkable courage and resilience while facing difficult challenges.

Additional resources:

"Illuminating an illness without end," a TED Blog with Jennifer Brea about the film she is making called Canary in a Coal Mine.

“It’s not all in my head. The pain I feel is real: How Moral Judgment Marginalizes Women with Fibromyalgia in Canadian Health Care” by Margaret Oldfield published in Women's Health and Urban Life, Vol 12 (1), pg 39-60.

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