Turning “Cope” to “Hope” for Thousands of Fibromyalgia/CFS PatientsBy Yvonne Keeny
My illness brought a special understanding and empathy for people with fibromyalgia and chronic fatigue syndrome and the difficulties of day-to-day living. It is my hope that by sharing my story you will better understand these illnesses. Also, if you are one of the millions of people now suffering with these conditions, you will realize there is HOPE.
I had enjoyed good health most of my life. If someone had told me thirty years ago that I would suffer for years with widespread pain, tight muscles, unrelenting fatigue, digestive problems, sleep disturbance, brain-fog, headaches and innumerable other symptoms I would not have believed them.
However, in 1984 something went terribly wrong. In the beginning, I developed irritable bowel syndrome and was diagnosed with lactose intolerance. In 1986 I was diagnosed with osteoarthritis. I went to several physicians over the next ten years and was told they could find nothing other than “a little osteoarthritis.” Most doctors prescribed anti-inflammatory medication and sent me on my way. I finally decided that it had to be something other than osteoarthritis because I hurt all over, not just in the joints, and there were days I was unable to go to work because of the pain and fatigue.
In October 1996, while looking through a book on arthritis, I saw an illustration with tender points and a description of fibromyalgia. I believed this was what was causing my mysterious health problems. I went to my doctor who ran several tests to rule out other diseases and he confirmed my suspicions. He prescribed pain medication, antacids, and antidepressants for sleep.
I soon needed additional medications to counteract side effects of those medications. My condition continued to deteriorate and after awhile I was praying for just one day without pain. The doctor told me there was no cure and recommended “coping” skills. I didn’t want to cope! I wanted my life back! I finally decided there had to be a better way. I began searching for options that had been effective for other people.
I started walking and made sure I drank 8-10 glasses of filtered water every day. I began eating more organic food, less meat, more fresh fruit and vegetables and started taking some whole food supplements. I avoided MSG, artificial sweeteners, refined sugar, coffee, carbonated beverages, alcohol and tobacco smoke. These measures helped a lot! Also, with the help of a healthcare professional, I began easing off of the medications and within two months was off of all meds. To my amazement my pain was no worse without the medications than it had been with them and my energy level was much better!
In October 1997, I went to a fibromyalgia workshop conducted by Mary Moeller, LPN. Mary had suffered with fibromyalgia and chronic fatigue since she was a child and had been symptom free for 3-4 years. When I heard she had used the same approach that I was using I knew I was on the right track! Mary said that many people with these conditions have a systemic yeast infection. I called the lab she mentioned and got the name of a local physician who would test for yeast overgrowth. The doctor also tested me for food sensitivities and other allergies. I had a bacterial infection in my GI tract as well as a yeast overgrowth. I was also sensitive to several foods and chemicals such as those found in perfumes, common household cleaners, pesticides, etc. Within a few weeks after starting treatment for the yeast and bacterial overgrowth, along with avoiding those substances to which I was sensitive, I was feeling better than I had felt in years.
In January 1998, I started a support group as an outreach to the community. I figured if I could recover then other people could too, and I was right! We named it the Getting Well support group because we wanted to support people in their efforts to get well. The group grew rapidly. Soon there were over 70 members in the group and I was getting calls and letters from all over the nation.
The Fibromyalgia Coalition International was formed in 2000. FCI has provided information and resources to more than 10,000 people throughout the U.S. and several foreign countries. We also host an annual Fibromyalgia/CFS Awareness conference in Overland Park, Kansas. Speakers include some of the leading fibromyalgia and chronic fatigue experts in the nation.
I’m glad that I found out about the gut connection and hidden food and chemical sensitivities after I had tried the medication route. Otherwise, my mind might have been closed to trying natural remedies and I would still be suffering. In order to stay well I continue to do those things that helped me get well.
There is no quick fix for fibromyalgia, chronic fatigue and related conditions. My health improved gradually. Sometimes I took one step forward and two steps back. It took me about eight months of ups and downs to become symptom free. However, I stuck with the program and I’m thankful I did. It is awesome to have my life back! I have not taken any medication for fibromyalgia since May 1997. I still watch what I eat and drink and avoid toxic chemicals as much as possible.
We understand the challenge diet and lifestyle modification creates for people. It would be much easier to pop a few pills every day. I am not opposed to medications; they can be very helpful and even save lives in some instances. However, many fibromyalgia patients have discovered that medication that is effective for acute pain is often not effective for chronic pain. They have also discovered that taking pain medications long term can cause many unwanted side effects.
In order to improve health and prevent further injury to the organs and immune system, it is important to find a healthcare provider who understands how to identify and the treat root cause(s). In addition to proper diagnosis and treatment, long term relief of symptoms largely depends on the patient gathering practical information, making use of it in dietary and lifestyle modifications and avoiding foods and chemicals that trigger reactions.
The evidence is that patient’s use of self-help strategies have been as important as what their doctors have done for them. It takes a team effort and patients have to be the captain of their team!
One of the benefits of becoming a Fibromyalgia Coalition International member is a subscription to our quarterly magazine, Fibromyalgia Solutions. It includes information, resources and tips from patients and doctors that truly understand what helps. Join FCI now and discover root causes and answers in each issue of Fibromyalgia Solutions magazine.
You are not alone we are here to help!
Disclaimer: These statements are meant for education only. Any attempt to diagnose and treat illness should come under the direction of a healthcare professional. Fibromyalgia Coalition International and Getting Well support groups offer support as an adjunct to, not a substitute for, professional health care.