The Myalgic Encephalomyelitis / Fibromyalgia Society of Alberta

by Doris Fleck

     As I drove out of Vancouver on a warm sunny day in mid-February, I felt so unwell that I considered turning around and going straight back to bed. It was the third time in six weeks I had come down with flu-like symptoms, but this time they seemed more intense.

     At 25 years of age, I was extremely busy juggling university classes, two part-time jobs and church involvement. There weren’t enough hours in the day for me and I certainly had no time for illness.

     But sudden fatigue, dizziness and blurred vision had hit me with a vengeance, and now I also felt a burning sensation at the base of my neck.

     As I drove past the Vancouver General Hospital, the thought floated through my mind that I should check in at the emergency ward, but I dismissed this notion as foolish. My parents lived in Abbotsford, a mere hour away. A good night’s sleep and some old-fashioned care would make me feel better in no time.

     But the longer I drove, the more severe the symptoms became. The burning sensation climbed up the back of my neck and my chin began to feel numb.

     As I approached the Port Mann Bridge, a tingling sensation enveloped my head. Suddenly I became very dizzy and felt faint. I panicked! What if I passed out while I was driving over the bridge? I had heard of cars crashing over the cement barrier and catapulting into the Fraser River.

     My heart was racing and I began to gasp for air. The tingling rapidly changed into a progressive numbness that cascaded over my neck and down my upper body. I could see my arms, but they felt like cotton balls. I thought I was having a stroke. My panic escalated and I began praying out loud, begging God to spare my life.

     Thankfully, I was over the bridge in a minute. Relieved, I drove to the look-out station on the other side. I intended to rest for awhile and then continue on, but the numbness had already spread to my legs. I was so frightened I called an ambulance and was rushed to the nearest hospital in Surrey.

     Thus began six years of confusion, questions, emergency room visits and medical testing. My symptoms confounded over 40 doctors and specialists until I was finally diagnosed with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (CFS) as it is referred to today.

     When I became sick in 1986, few physicians knew anything about CFS. Many thought I was clinically depressed or concluded my bizarre assortment of symptoms were emotionally induced. On the advice of a doctor, I went to see a psychiatrist that came highly recommended. After three visits she told me my troubles were medical and advised me to seek medical help. When I produced a long list of the specialists I had already seen she merely shrugged her shoulders.

     If I had understood the disease at the time, I would have realized I was a “textbook” CFS patient. According to clinical researcher and medical doctor, Michael Rosenbaum, over 70 per cent of people afflicted with CFS in America are Caucasian women who are well-educated, affluent and in their early 20s to mid-40s. Most people, like myself, report a sudden onset of the disease with symptoms that generally come and go. Although many see a measure of recovery and some regain complete health, others are severely disabled for a period of years. For a few, the disease never goes away.

     I went from being a very active, energetic, enthusiastic person to bedridden in days. My symptoms continued in a cyclical pattern from severe disability to various stages of remission over the next nine years.

     The fatigue that plagued me was something I had never experienced before. I wasn’t just tired; I felt like I had 20-pound weights attached to my arms and legs. This was combined with a litany of other symptoms that included muscle pain, heart palpitations, night sweats, cold hands and feet, numbness, sensitivity to light and sound, intense pressure in my head, inability to concentrate, insomnia and nausea.

     I became terrified of what was happening to me. This panic sent my heart rate skyrocketing and induced heart palpitations and arrhythmia. These “panic attacks” precipitated numerous trips to the emergency room.

      I had to drop out of university and spent the next year and a half, using what energy I had, searching for solutions.

     While the multiplicity of symptoms I suddenly experienced are now commonly used to define CFS, they also fit a number of other diseases.

     Since no quick diagnostic tool is available, most CFS sufferers have to undergo a plethora of medical tests to rule out other diseases and I was no exception. I gave hundreds of blood samples and litres of urine as I was tested for lupus, rheumatoid arthritis, diabetes, thyroid disease, cardiac problems, cancer and a host of other ailments. I underwent a CT-scan to rule out multiple sclerosis and the possibility of a brain tumor. I endured three separate six-hour glucose tolerance tests to check for diabetes and hypoglycemia. The doctors reviewing these tests said I had reactive hypoglycemia, but agreed it should not be this debilitating.

     One doctor encouraged me to “get on with your life.” I asked him how that was possible when simple tasks, like sitting up for 10 minutes at a time, completely exhausted me, but he couldn’t provide any answers.

     In their excellent book, Chronic Fatigue Syndrome: A Treatment Guide, authors Erica Verrillo and Lauren Gennman explain that this is, “one of the most complex, multifaceted, baffling illnesses the medical world has encountered.”

     Thus far no one has been able to identify the cause of CFS, find a cure or even come up with a good case definition.

     According to Verrillo and Gennman, “It is hard to describe and even harder to diagnose because its symptoms can range from allergies to vertigo and can occur in every imaginable combination. Most confusing, however, is the range in severity of CFS, from mere inconvenience to utterly disabling disease.”

     For myself, necessary functions became almost insurmountable. Walking a few feet to the bathroom was so exhausting, I felt like I was trying to conquer Everest. I began measuring every action in terms of the energy it consumed and how much recovery time I would need afterwards. Over the next nine years fully half of my days were spent lying in bed, trying to gather strength for eating, talking and bathing. It was a living nightmare.

     In the early 1990s, Rosenbaum estimated 90 million people world-wide were afflicted with CFS. Like AIDS, CFS is recognized as an acquired immunodeficiency disorder. Unlike AIDS, it isn’t deadly, but produces a paralytic fatigue that makes many CFS sufferers wish they were dead. The suicide rate among people with CFS is high because of this.

     The first recorded “epidemic” of a CFS-like illness occurred in 1934 in Los Angeles and affected close to 200 health workers. This outbreak followed on the heels of a poliomyelitis epidemic and was initially, incorrectly diagnosed as polio. To this day, similarities between these two diseases have researchers searching to discover a mutated viral form of polio which could be the root cause of CFS.

     With no known cause and little understanding of the mechanism of this confounding disease, treatment options have been scarce. Although doctors have now given credibility to CFS and are capable of making a relatively quick diagnosis (three months to a year), their inability to effectively treat the disease has caused multitudes to turn to alternative health care.

     Rosenbaum concludes that the results of this have been very beneficial. Many people with CFS have been found to be plagued by parasites and on-going candidiasis, a form of yeast infection, as well as suffering from hypoglycemia. Appropriate treatment for these problems has resulted in numerous sufferers achieving improvement. Though not a cure, some people are able to return to a semblance of normal living.

     Personally, I found a good naturopath and allergist within the first 18 months. Sticking to a strict diet, fighting off the candida and making use of massage therapy helped me immensely. An excellent family doctor encouraged the use of B-12 injections, which have proven very beneficial. A combination of prescription drugs to help me sleep and natural remedies along with on-going prayer have helped keep me free of major relapses for the last twelve years.

     In Canada, Dr. Byron Hyde began studying CFS in 1984. He organized and founded The Nightingale Research Foundation in Ottawa. With his help there have been world symposiums on this disease and the production of a clinical textbook to offer technical assistance to physicians.

     Recently Dr. De Meirleir, who works in Brussels, developed a diagnostic test that shows evidence of CFS. The test gauges the amount of an immune enzyme that protects the body against viruses. Those with chronic fatigue syndrome have an abnormal form of the enzyme that is more active, yet less effective than the healthy form of the agent.

   In late 2006, the test became available in America for the first time, when RED LABS opened operations in Reno, Nevada. While the cost of $570 US test is covered by insurance in the United States, it is not covered in Canada.

     Even though I was totally bedridden at one time and wished I were dead, I am now very thankful to be alive. Although I could have a relapse at any time, each day when I awake with energy to work and enjoy life I am grateful. Without the support of an amazing husband, caring family, compassionate friends, and a church group that supplied meals and prayer, I don’t know if I would be alive today.

     For more information on CFS, The Nightingale Research Foundation can be contacted on the web at www.nightingale.ca. Two excellent resource books with solid advice on treatment are; Solving the Puzzle of Chronic Fatigue Syndrome by Dr. Michael Rosenbaum & Dr. Murray Susser and Chronic Fatigue Syndrome: Treatment Guide by Erica Verrillo & Lauren Gellman.

     If you would like to contact me directly, you can do so by e-mailing me at doris@calgarychristian.com.