Dominie's Fibromyalgia Story
Fibromyalgia Facts, Management, Support and Treatment
I had no idea what was wrong with me. I consulted many doctors--neurologists, orthopedic surgeons, chiropractors, rheumatologists, doctors of internal medicine, etc. Each one had a different theory: R.S.I. (repetitive stress injury from overuse), fibrositis, multiple sclerosis, thoracic outlet syndrome, pinched nerves, tendinitis, carpal tunnel syndrome, and even a hypothyroid condition. The final diagnosis was R.S.I. (repetitive stress injury from typing) and fibromyalgia (fibrositis). I had tenderness at all the trigger points characteristic of fibromyalgia, and stiffness and pain in my muscles. At times I also had muscle tremors and slurred speech. I felt totally burned out. The doctors prescribed drugs--anti-depressants, anti-inflammatories, muscle relaxants and others--but nothing really helped. It was very frustrating!
I tried taking vitamins and exercising. The vitamins helped me feel stronger, but the debilitating pain and stiffness of fibromyalgia still persisted. Exercise actually made the condition worse--it felt like my muscles were tearing. Even mild stretching, such as reaching too far into a cupboard, would cause pain that lasted for weeks. Playing the piano, because of the repetitive use of the muscles of my fingers and hands, would cause me days of misery. I was puzzled that I even had pain when my body was completely at rest!
Since it was unlike any other pain I had ever experienced, I found it hard to describe to others. Sometimes it was a sharp jabbing sensation, at other times a dull, miserable ache that wore me down. It felt like the nerves and muscles were irritated and inflamed. Because I looked healthy and kept up with my responsibilities, a lot of people didn't believe that I was suffering like I was. Some even said it was "all in my head" or that I was lazy and trying to avoid work! Needless to say, this increased my emotional stress levels! Unfortunately, not much was known about fibromyalgia in the early 1980's.
I started losing the feeling of "connection" between my brain and my hands. I would think I was going to drop something, when actually I would be gripping it very tightly. Also, if any weight was put on my arms, such as carrying grocery bags, lifting a heavy pot from the stove, holding a baby, having a child pull on my arm, etc., I would get terrible pains in my arms that would last for days. I felt practically disabled! So many activities I never gave a second thought to now became obstacles throughout the day!
Eventually two fingers on each hand curled over. I could straighten them out using the other hand, but it was as though tight rubber bands were pulling them down. One doctor called this condition "claw-hand deformity." I finally had to quit my job, as I could no longer write or type.
Suddenly without my job and the identity it had created for me, I felt lost, unproductive and depressed. I could barely keep up with everyday tasks. As a "Type-A, take-charge, high-achieving" kind of person, these drastic changes in my life were hard to accept. It was a nightmarish time financially as well. We had to sell our house, relocate and sell many possessions in order to meet expenses, as we were not prepared for the loss of my income.
I tried physical therapy, cortisone shots, massage therapy and chiropractic to relieve my fibromyalgia. Of all the remedies I tried, massage helped the most, but it was very expensive and the relief I obtained ended almost as soon as the massage did! My muscles were drawn up and tight, especially in my upper back and neck. Massage therapists told me that my muscles felt "hard." My whole body was painful and stiff. If I sat for more than 10 or 15 minutes, I could barely get up again because of the pain and stiffness in my knees and legs. I felt like a very old person. I learned to sleep on my back because of chronic pain in both shoulders.
After a couple of years, I went back to work part-time. But even that was too much at times. The fibromyalgia would flare up or ease off depending on how much sleep I was getting or how much stress I was under. I felt depressed and fatigued much of the time and also suffered from allergies, tinnitus, TMJ, heart palpitations and painful endometriosis. I had a lot of trouble with insomnia. Usually one bad night's sleep led to 4 or 5 more nights of even worse sleep! I tried a lot of remedies, but they all left me feeling drugged and hung over the next day.
Over the years doctors prescribed many drugs for fibro pain, sleep problems and depression. Some that I recall were Elavil (Amitriptyline), Flexeril, Pamelor, Klonopin, Prozac, Halcion, Ativan, Valium, Lithium, Inderal, Ansaid, Hydroxizine, Motrin, Feldene and Naproxen. I also took Premarin for my endometriosis, and antihistamines, decongestants and shots for my allergies, and I needed frequent antibiotics. My immune system did not seem to function well, and I was very susceptible to catching viruses.
The physical pain of fibromyalgia was bad enough, but the chronic fatigue and the battles with depression wore me down mentally as well. For years I was so physically weak that even a 45-minute car trip would completely exhaust me! Also, the depression at times was very severe, as my serotonin levels were depleted from years of sleep deprivation. In order to cope, I learned to reduce all forms of stress in my life and to curtail any activities that would make the fibromyalgia worse. I came to accept the fact that I could no longer participate in many of the activities I had previously enjoyed, and I eventually adapted to a limited lifestyle. The carefree days of good health seemed over for good, and I had given up any hope of a "cure" for my fibromyalgia.
Freedom From Pain & Sleepless Nights
In May of 1996 something happened that would change my life completely. Through a series of unusual circumstances, I met an elderly woman who handed me a large manila envelope containing information on fibromyalgia. She told me that someone had given the envelope to her, but since she was going into the hospital for surgery, she didn't feel up to reading it. I took the packet home and began to study it--and my curiosity was stirred! I had just gotten a computer, so I decided to do some research on the internet. Boy, did I learn a lot! I soon had 95% relief of my FMS symptoms of pain, muscle stiffness, depression, sleep disorder, fatigue, digestive problems and frequent illnesses.
This has been a great improvement from my former "semi-invalid" lifestyle. An innovative immune technology has helped me greatly, as well as taking a strong antioxidant and powerful nutritional powder daily. I also use therapeutic grade essential oils. If you would like brand names and information, please write me. I still need to take a sleep med at night. (See the list of things I've tried for sleep.)
The only people I know of who have obtained relief from fibromyalgia have done so through nutritional rather than pharmaceutical means. I was surprised when my own doctor told me he had learned a lot about nutrition in the past 2 years--and that he now knew that certain powerful supplements can clear up fibromyalgia.
As recently as 1990, there was very little information available about FMS, CFIDS, etc. However, a number of books have now been written by medical doctors regarding natural treatments for fibromyalgia and chronic fatigue syndrome! It's wonderful to see many of the ideas that have helped me and others actually in print by health care professionals! Some of these doctors have fibromyalgia themselves, which gives credibility and visibility to this misunderstood illness. Here's a short list: "Treating and Beating Fibromyalgia and CFS" by Dr. Rodger Murphree; "Alternative Medicine Guide to Chronic Fatigue, Fibromyalgia and Environmental Illness" by Burton Goldberg; "Inside Fibromyalgia" by Dr. Mark Pelligrino; "America Exhausted: Breakthrough Treatments of Fatigue and Chronic Fatigue Syndrome" by Dr. Edward J. Conley; "Dr. Crook Discusses Yeasts and How They Can Make You Sick" by Dr. William G. Crook. M.D.; "From Fatigued to Fantastic" by Jacob Teitelbaum, M.D.; "Getting Well Naturally - Chronic Fatigue Syndrome" by Michael T. Murray, N.D.; "Natural Alternatives to Prozac" Michael T. Murray, N.D.; "Prescription for Nutritional Healing" by James F. Balch, M.D.; "Fibromyalgia and Chronic Myofascial Pain Syndrome: A Survival Manual" by Dr. Devin Starlanyl; "Recovering from Chronic Fatigue Syndrome" by Dr. William Colline, M.P.H., Ph.D.; "The Fibromyalgia Cookbook" by Mary Moeller; and "Wellness Against All Odds" by Dr. Sherry Rogers.
Since having fibromyalgia for over 20 years, I discovered many things that helped me. These may or may not work for others, but it's a starting place if you need some ideas. Please read my 100 Tips for Coping with Fibromyalgia and Insomnia. Also, click on the links from my homepage to read more information that I have added to the site since writing the tips. If you are looking for specific information, you can search my site using the Google SEARCH box below.
There is some debate among medical researchers over whether CFIDS (chronic fatigue immune dysfunction syndrome) and FMS (fibromyalgia syndrome) are the same disorder or two separate illnesses. However, they have many overlapping symptoms.
FMS/CFIDS is a disabling and frustrating disorder that ruins the lives of millions of people. I still have to watch my stress levels, but I can function again, for which I am very grateful. Much more medical research--and, I might add, more medical interest--is needed regarding FMS/CFIDS. (I have my own theory as to what causes it.) I am behind all efforts to increase public awareness of this devastating chronic "invisible" illness.
Dominie Soo Bush
My Insomnia Story
What I Use
DISCLAIMER: I am not a medical doctor. I am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented as food for thought. This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information in this website.