By Jennifer Van Massenhoven
Fibromyalgia (FM) affects approximately one to 1.5 million people. Approximately 100, 000 Canadians suffer from Chronic Fatigue Syndrome (CFS). This makes both conditions more prevalent than both Multiple Sclerosis and AIDS. However, very few in the medical community, or in society, acknowledge either disease as being real. Why is that?
With MS, AIDS and cancer there are definitive tests that offer concrete results, showing the presence of the diseases quite clearly. As yet, no such thing exists for FM and CFS. Diagnosis of FM and CFS is based on the presence of symptoms for a given time period.
With FM, patients must have widespread pain in all four quadrants of the body for a minimum of 3 months and at least 11 of 18 specified trigger points. They are around the neck, shoulder, elbow, chest, hip and knee regions. Generally made by a rheumatologist, a 'positive' diagnosis will not be made unless all 18 points are present. If you have between 11 and 17 points the doctor is likely to tell you they only suspect you have FM.
Both conditions share pain and fatigue, but come with other unpleasant symptoms. At least two neurological changes must be present, which could include memory loss, brain fog or light sensitivity, among others.
Patients with CFS, which may be another expression of FM, are generally diagnosed if they have clinically evaluated, persistent or relapsing unexplained chronic fatigue that is new onset and not the result of ongoing physical exertion. This fatigue is not relieved with rest and results in changes in personal and occupational habits.
In both instances, patients are often ignored for months, or viewed as hypochondriacs, chronic complainers seeking attention. Often, these patients are mothers with young children. This is largely because the complaints are more often associated with age; joint pain, fatigue and memory loss are not things people expect in women in their twenties and thirties.
Alice says she began experiencing pain when she was around ten years old. When she was 13, a cousin died of bone cancer and she spent many years assuming that the source of her pain was something similar. Some 'dread disease.' Alice is not the only one to have suffered as a child. Children are not often taken seriously as they tend to mimic parents, or emphasize hurts in order to gain attention. It is the nature of the child. Three of Alice’s seven children, now 31, 19 and 8 are all sufferers, though only the eldest has been diagnosed.
In her late teens, she began visiting doctors and specialists. Eventually someone discovered she had an under active thyroid and put her on synthetic hormone treatments. Everyone assumed she would soon feel better. She didn’t. In 1992, Alice found a very small article in a magazine. It talked about an illness that affected the entire body and described the pain as 'near constant pain in the bone and muscles.' She felt the author of the article must have gotten into her head. It sounded exactly like the way she felt. Finally! Someone had put a name to it. She took the article to her practitioner only to be told that he knew she had FM but had not told her because there was nothing to be done about it.
The diagnosis made her feel immensely better, mentally and emotionally. She finally had a name to the dread disease she was sure must strike her down at any moment, to the pain she had lived with for almost as long as she could remember. She has learned since then that there are things you can do. Move as much as possible, even when it hurts too much to do so, for example. Keeping a positive outlook is vital.
She and her eldest daughter, a mother herself, have both had trouble with doctors and treatments. In Alice’s experience there has been a lot of pill pushing. There is very little useable advice, simply because doctors do not know what to do. While the World Health Organisation recognizes FM as a debilitating soft tissue disorder and Health Canada helped develop the clinical diagnosis and treatment protocol, it is important to note that the Canadian Institute of Health Research, Canada's main funding source for medical research, has little being done for Fibromyalgia. How is it that more than one million Canadians can be suffering this disease and so very little is being done?
Many doctors refuse to take FM seriously. In fact, one doctor Alice visited told her pain is a mood. She, a normally passive person, felt like inflicting a large amount of pain on the man and asking him what mood he was in now. Indeed, after the birth of her seventh child Alice’s body had deteriorated to the point where she was unable to function as fully as a ‘normal’ person. She was incapable of the regular day-to-day maintenance of home and hearth, let alone the outside work required to pay for said home. She decided to see about the disability pension. After many, often humiliating, tests and doctors visits she was approved. When she moved from Ontario to Alberta, she was forced to reapply to the Assured Assistance program.
When asked How FMS affects her life the most she had this to say; “There are days when my limits are very severe, days when I cannot walk, there are no days when I can run and play with my young boys, or go bike riding with them, or do any activity that might take more than an hour or two. My body will not stand up to prolonged activity of any kind. One of the biggest issues is seeing an unknown doctor or specialist, who takes one look at me and says I 'look fine,' a very frustrating barrier to break through. Also, trying to make the little boys understand that I just can't do the things other Mom's [can] is very difficult and frustrating for all of us. One of the main reasons I live alone is so as not to inflict all of my problems on a partner, which deprives myself of companionship and my boys of a father figure.
Fibromyalgia is an invisible disease that every sufferer wishes to make visible. It is very frustrating to be told, 'You look fine' by friends, family and physicians alike. In far too many cases, this disease is destroying marriages. Too many times spouses find themselves unable to cope with the level of suffering the loved one is going through. It is almost impossible to understand unless you are experiencing it.
However, it isn’t only the pain that 'Fibromites' must deal with. FM disrupts other systems, including the immune system, putting people like Alice at greater risk for West Nile, Flu and more serious diseases. There are other complications as well: asthma, gastrointestinal disorders such as Irritable Bowel Syndrome, chronic migraines and headaches. Because of this, FM patients are often left behind as their families go through their lives. Forced to watch family games of soccer in the summer, hold down the fort while other family members take long walks and exploratory hikes or sit in a chair and cheer others on. In some cases, they are left at home to miss out entirely.
With so many people suffering one would think that more is being done. Unfortunately, it is left to the great many people with FM and CFS to fend for themselves. They are forced to experiment with many different medications to find ones that work. They are often living below the poverty line, unable to contribute but using taxpayer resources. Too often, they are left alone to find their own means of support, emotional and physical, as people tell them they look fine.
Fortunately, there is now a group dedicated to furthering awareness and extending a hand for support and help. FM-CFS Canada is a national charity that offers a Patient Registry, so researchers can find them, as well as chronicling the stories of Fibromites. The group can be found at www.fm-cfs.ca. Those at FM-CFS Canada, patients and volunteers alike, hope that the patient registry and the availability of information will help encourage doctors and researchers to do something about FM and finally find a cure.
