Understanding fibromyalgia

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Publication Date: 
Mon, 2013-10-07

“I have Fibromyalgia Syndrome and was diagnosed when I was 22, over 12 years ago, but few people would know that because it is an invisible disability … I rarely mention it because there is a certain bias associated with chronic pain conditions especially with one that has such elusive symptoms with no known cause. People don’t get it, they can’t wrap their head around it and so discussing it, say, in a workplace environment can cause negative reactions or work-related discrimination … In general, people often describe it as that achy flu-like feeling people are familiar with times 10, but 
all the time. However, the chronic pain and fatigue aspect of the condition are but a fraction of the syndrome itself. “  
- Nikki Albert, blogger

By Margaret Parlor

Canadians with fibromyalgia struggle not only with real and debilitating symptoms, they also struggle with a health and social services system that has little understanding of their condition. Patients have difficulty finding medical support. They have difficulty getting accommodation at work or at school. They have difficulty qualifying for income support and other disability benefits.

Many issues need to be addressed. How is fibromyalgia defined? What are the causes and the impacts? And how should fibromyalgia patients be served?

Fibromyalgia defined

In 2004, the Journal of Musculoskeletal Pain published the following description of fibromyalgia:

“The prominent feature of FMS [Fibromyalgia Syndrome] is chronic, widespread musculoskeletal pain, but it is usually accompanied by numerous other multi-systemic dysfunctions. Fibro refers to the fibrous tissue, myo refers to the muscles and algia refers to pain.”

 Fibromyalgia, or Fibromyalgia Syndrome (FMS), is not a new condition. It was known as muscular rheumatism in the 19th century and fibrositis throughout most of the 20th century. In 1990, the American College of Rheumatology (ACR) developed a definition for research purposes using the term ”fibromyalgia.” The research definition, based on a history of widespread pain, also included pain in at least 11 of 18 tender point sites throughout the body on digital palpitation. By introducing this definition of fibromyalgia, rheumatologists essentially took ownership of the illness.

While the 2010 proposed definition may have been intended to provoke discussion, that discussion has not taken place in Canada, leading to confusion about which definition should be used.

A decade later, Health Canada established an expert panel to recommend how clinicians should diagnose and treat fibromyalgia. The panel recommended that diagnosis be based on the 1990 American College of Rheumatology research definition. They then recommended that clinicians screen for additional symptoms and signs to determine the total burden of illness. The 2004 Canadian guidelines note that:

“In addition to the compulsory pain and tenderness required for research classification of FMS, many additional clinical symptoms and signs can contribute importantly to the patients' burden of illness. Two or more of these symptoms are present in most FMS patients by the time they seek medical attention. On the other hand, it is uncommon for any individual FMS patient to have all of the associated symptoms or signs ... These additional clinical symptoms and signs are not required for research classification of FMS but they are still clinically important.

The 2004 Canadian guidelines list six categories of symptoms and signs:

  1. Neurological Manifestations: Numbness and tingling in the muscles, cramps, muscle weakness, headaches, generalized weakness, sensitivity to light and sound.
  2. Neurocognitive Manifestations: Poor concentration and short-term memory loss, impaired speed of performance, inability to multi-task, and/or cognitive overload.
  3. Fatigue: Persistent and reactive fatigue accompanied by reduced physical and mental stamina.
  4. Sleep Dysfunction: Sleep is unrefreshing. There may be disturbance in sleep quantity or rhythm including daytime; hypersomnia or nighttime insomnia.
  5. Autonomic and/or Neuroendocrine Manifestations: irregular heartbeat, dizziness, heat/cold intolerance, respiratory disturbances, intestinal and bladder disturbances, stress intolerance, blunted emotions and/or reactive depression.
  6. Stiffness: It is common to have generalized or regional stiffness that is most severe upon awakening and typically lasts for hours. Stiffness can return during periods of inactivity during the day.

In 2010, the American College of Rheumatology published an article proposing new diagnostic criteria described as “preliminary,” “provisional” and “alternative.” A modification was published in 2011. Under the 2010/11 criteria, two scores are calculated to make a diagnosis. The Widespread Pain Index measures how many of 19 parts of the body have pain. The Symptom Severity Index measures the degree of activity reduction, sleep problems, cognitive difficulties, and other physical symptoms. While the proposed definition may have been intended to provoke discussion, that discussion has not taken place in Canada, leading to confusion about which definition should be used.

Causes of fibromyalgia

"Most of the research findings in fibromyalgia point to a malfunctioning of the central nervous system (CNS), which includes the brain and spinal cord. Yet, there appear to be a variety of abnormalities occurring in the peripheral soft tissues (muscles and connective tissue) and the peripheral nervous system that communicates with the CNS. This dysfunctional interplay between the CNS and peripheral systems is believed by most investigators to be the source of the many body-wide symptoms." - Fibromyalgia Network

There are a number of ways of understanding fibromyalgia, including as a rheumatologic illness, as a neurological illness, and as a chronic pain condition (but not exclusively any of these conditions.

In 2012, the Canadian Rheumatology Society and the Canadian Pain Association endorsed new guidelines, which described fibromyalgia as “neurophysiological.” These guidelines, the Canadian Guidelines for the Diagnosis and Management of Fibromyalgia Syndrome for Adults, did not indicate a role for rheumatologists, neurologists or chronic pain specialists. Responsibility for fibromyalgia was assigned to family doctors, an unrealistic strategy considering how much research and communication need to be done and how complex some of the cases can be.

Impacts of fibromyalgia

Statistics Canada data provides us with a picture of the current understanding of the impacts of fibromyalgia in Canada. The Canadian Community Health Survey is a major survey with the target population being Canadians aged 12 and over living in the community (not institutions). In 2001, 2003, 2005 and 2010, respondents of the survey were asked if they had been diagnosed with fibromyalgia by a health professional.

The 2010 survey found that there were 439,000 Canadians with a diagnosis of fibromyalgia, about 1.5 per cent of the target population. It found that other pain conditions are more prevalent: 5.5 million Canadians reported back pain and 4.5 million Canadians reported arthritis. Many well-known conditions were found to be less prevalent: 111,500 Canadians reported Alzheimer's, 108,500 reported Multiple Sclerosis and 102,500 reported Crohn's disease.

The profile of someone with fibromyalgia is primarily female and working age. Women accounted for 80 per cent of the cases, making it the most female predominant of the conditions surveyed. Other female predominant diseases included multiple chemical sensitivities (72 per cent), bowel disorders (71 per cent), migraines (70 per cent) and chronic fatigue syndrome (66 per cent). Male dominant conditions included heart disease (42 per cent female), diabetes (44 per cent) and Alzheimer's (48 per cent).

Half of people with fibromyalgia are between 40 and 60 years old, a time of life when they are supposed to be contributing to family and the economy. Many of the people we hear from are struggling to continue working or struggling to qualify for disability benefits. Many are struggling to care for themselves and their families.

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.

“Fibromyalgia; evolving concepts over the past 2 decades” by Mary-Ann Fitzcharles et al. published May 6, 2013 in the Canadian Medical Association Journal (CMAJ).

Dr. Eleanor Stein interview about ME/FM/MCS developments. Videos available on her website.

MEFM Action Network Facebook page. See the photos of Niagara Falls lit blue for ME/CFS, purple for Fibromyalgia and green for Multiple Chemical Sensitivities on May 12, 2013.

Link to the Canadian Pension Plan (CPP) disability guide  on the MEFM Action Network website.

Teach-ME: A Sourcebook for Teachers of Young People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and/or Fibromyalgia Syndrome (FMS)

2012 Canadian Guidelines for the diagnosis and management of fibromyalgia syndrome by Mary-Ann Fitzcharleset al. Available on the Canadian Rheumatology Association website and the Canadian Pain Society website

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