My fibromyalgia/chronic fatigue syndrome (CFS) odyssey began in 1984. I had been healthy my entire life when something went terribly wrong. I developed widespread muscle pain, fatigue, digestive problems, sleep disturbances, anxiety, brain fog, and short-term memory loss. I went to several doctors and all they could find was “a little osteoarthritis” and a case of lactose intolerance. Even though the fatigue was more debilitating, I eventually received a fibromyalgia diagnosis.
My road to recovery was often one step back to every two steps forward. But it was a journey filled with many victories that collectively restored my health and has allowed me to remain so for over nine years after more than 13 years of suffering.
MY FIRST MAJOR DISCOVERY came in the early 1990s while reading a book on reversing arthritis. There was an illustration of tender points and a one-page description of fibromyalgia. Fibro-my-what? I had never heard of it, but I certainly fit the description!
I immediately scheduled an appointment with my doctor, who ran several tests to rule out other diseases and $450 later concluded, “I believe you have fibromyalgia.”
I spent the next few years on pain medication, anti-depressants, etc., as I waged a losing battle to control my pain and multiple symptoms. While the medications seemed to take the edge off, they did not stop the pain. However, they did cause a multitude of side effects which also contributed to my fibromyalgia/CFS.
My health was getting worse and I would constantly pray for just one day without pain. The day I picked up the Physician’s Desk Reference Guide (PDR) and saw stroke listed as a possible side effect of one of the medications I was prescribed, I lost it! Bursting into tears, I realized there had to be a better way to battle this illness! “There had to be something out there,” I thought, “that can help me without wreaking havoc on my body!”
MY SECOND MAJOR DISCOVERY came in the spring of 1997 when I began searching the Internet for natural remedies. I discovered there were several alternative treatments that had been effective. Once I changed my approach from “Cope to Hope,” information just started jumping out at me. I became immersed in finding the cause of my problems and looking for ways to prevent my life from being completely destroyed by this illness.
The most beneficial treatments came from alternative/integrative doctors: M.D.s, D.O.s, and N.D.s; from acupuncturists, chiropractors, massage therapists, energy healers, as well as from self-help strategies, such as exercise, dietary changes, and nutritional supplements.
In addition to a good multi-vitamin, I started taking magnesium malate, probiotics, glucosamine, digestive enzymes, ginkgo biloba, and antioxidants as well as various supplements to help me sleep.
MY THIRD MAJOR DISCOVERY occurred in October 1997 when I attended a workshop led by Mary Moeller, L.P.N. Mary had suffered with fibromyalgia/CFS since she was a child, but in her mid-30s had decided to take an alternative approach and start doing what she could to help herself. She had been well for about three years. Her program was simple: drink plenty of filtered water; avoid MSG, white flour, refined sugar, artificial sweeteners, coffee, carbonated beverages, alcohol, and tobacco smoke; take nutritional supplements; and do stretching exercises every day. These were things I was mostly doing already.
However, Mary said that many fibromyalgia/CFS sufferers have a systemic yeast infection. I found an alternative physician who tested for yeast. I did have a yeast overgrowth and I was also sensitive to several foods, and chemicals such as those found in perfumes, common household cleaning products, pesticides, etc. Within a few weeks after starting treatment for the yeast infection, along with avoiding the offending foods and chemicals, I was pain free for the first time in years!
In addition to diagnosis and treatment of underlying causes by alternative doctors, reversing Fibromyalgia/CFS largely depended on gathering practical information, making use of it in dietary and lifestyle changes, and avoiding foods and chemicals that trigger reactions. Adhering to these self-help techniques has been as important to my recovery as anything that even the best doctors did for me. I don’t believe either would have worked without the other.
THE SIGNIFICANCE OF MY STORY IS THIS: My illness brought a special understanding and empathy for people with Fibromyalgia and CFS and the difficulties of day-to-today living. In January 1998, after my own recovery, I started the Getting Well support group to offer hope and help to other Fibromyalgia/CFS patients. The support group soon grew into one of the largest support groups in the U.S., the Fibromyalgia Coalition International.
I have been well since December 1997. I work 45-50 hours per week for the Fibromyalgia Coalition. And, although being the executive director of a large non-profit organization which publishes an alternative newsletter/magazine and hosts an annual Fibromyalgia/CFS conference is challenging and stressful, I can endure tight deadlines and a busy schedule. I feel an immense amount of satisfaction because every year I receive hundreds of calls, letters, and e-mails from Fibromyalgia Coalition members saying they feel better than they have felt in years!
I strongly encourage fibromyalgia/CFS sufferers to be proactive in their treatment process. People with fibromyalgia/CFS can improve their health. But in order to do this, you need to take an active role in managing your health and well-being.
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