Understanding fibromyalgia
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“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:
