When the rheumatologist diagnosed me I asked him what on earth Fibromyalgia Syndrome (FMS) was. He told me it had to do with muscles and connective tissues. He prescribed a mild anti-depressant, told me get some sleep and put my stress behind me. I assumed then all would be well. How little I knew -- but I was to learn.
The doctor gave it a name. At least I knew that much, but there were a multitude of unanswered questions. It seemed no one had ever heard of it, including my primary care physician, family and friends. The scant information about this little known condition found in the bookstores had no answers.
Having an inquiring mind and vast determination I set out on my journey to learn about this arcane health problem. One friend found a mention of it in, of all places, a monthly Alabama Electric Co-op publication. This led me to the National Arthritis Foundation. Another friend read a short article in a weekly magazine containing the address and telephone number of the Fibromyalgia Network.
The FMSNetwork maintains names of doctors and support groups in all states that have been recommended by PWFMS [people with fibromyalgia]. They publish a quarterly newsletter with information about the latest treatment and research in this area. One can also order several informative books, journals, etc., from them. Their address is Post Office Box 31750, Tucson, Arizona, 8751-1750 or call them at (520)290-5508.
In 1992 the Arthritis Foundation (AF) knew little to nothing about FMS. The man I spoke with at the state AF office gave me the name of a woman in Gainesville he had heard of who had FMS. When I spoke with that wonderful lady in Gainesville I asked questions about the strange, seemingly unrelated symptoms I had. Finally, for the first time in my life, I spoke with someone who knew and understood what I had been experiencing for so many years. At long last I knew the severe, unrelenting pain that had become an unwelcome but constant companion, was not all in my head!
She sent me a book, The Fibromyalgia Syndrome, by Mary Anne Saathoff, RN, BSN. The booklet answered many of my questions but not all of them. Now I wanted to learn more about FMS and what, if anything, could be done about it.
At this time my son built me a computer. That computer was to lead me to a vast store of definitive information available to me on the internet. Information from Universities, Medical Journals and other resources.
I was completely ignorant regarding the internet. David McMurtrey, an extraordinary man who does volunteer work for the Tallahassee Freenet, and Randolph Langley, Research Associate with the Supercomputer Computations Research Institute at FSU, enabled me to discover a whole new world. Without them and their unending patience, kindness and understanding I could never have obtained the information, support and help I enjoy today. They enabled me to find that world of immeasurable information. Most importantly, a world that gave me hope.
There is a discussion group on the internet composed of PWFMS. Some caring, dedicated doctors who specialize in FMS share generously of their precious time, knowledge and expertise to help PWFMS in this group we call our FMily. For those who are not familiar with the wondrous world of cyberspace, a discussion group is comparable to a support group. A virtual community of knowledgeable, loving, caring, understanding and compassionate people eager to help one another.
The group numbers close to 1,000 and the members are academicians, doctors, nurses, physical and massage therapists, anesthesiologists, technical writers, administrators, psychologists, psychiatrists, etc. All, except for three of the doctors, have one thing in common: They are people with FMS. Their ages range from 14 years of age to 82 years old. They are male and female, and live all over the world. They all live with this "invisible" illness our doctors, family and friends cannot cope with or understand.
The first and most important thing I learned was: I was not crazy, I was not imagining the, horrendous unrelenting pain, and I was not alone. Many doctors believe that fibromyalgia is primarily a psychiatric condition, if indeed they even acknowledge it exists. PWFMS know they hurt. There are no tests to confirm a diagnosis of FMS. Only a doctor skilled in locating the tender points of FM can diagnose it. The patient is usually told they are either over stressed or depressed, it's all in their head. They are then referred to a psychologist or psychiatrist.
Research published within the past 5 years indicate the exact opposite is true. Utilizing the resources available in cyberspace, last week I downloaded 30 abstracts and articles published in peer reviewed medical journals. All of them state FMS causes depression; it is not the result of depression.
It is known that FMS is a common musculoskeletal syndrome characterized by generalized pain, fatigue and a variety of associated symptoms. Although the term "fibromyalgia" was not introduced until 1976, this symptom complex was described as muscular rheumatism, fibrositis, fibromyositis and psychogenic rheumatism as early as the 17th century. Some researchers believe the description in the scripture of Job's many health problems were those of FMS.
Three to six percent of the entire population (including children) meet the criteria developed by the American College of Rheumatology in 1990. Further, most agree this figure probably represents a conservative estimate of the prevalence of fibromyalgia in the population. It is not known why, but women are more likely to have fibromyalgia than men.
PWFMS complain of fatigue, which can be and often is, severe and debilitating. Other symptoms include widespread pain, cognitive impairment, rashes, chronic itching, morning stiffness, sleep disturbance, burning sensations, anxiety, dysmenorrhea history, visual problems, irritable bowel syndrome, urinary urgency and Raynaud's phenomenon. FMS is sometimes called the great imitator because of the multitude of symptoms. Because of the diffuse pain, some call it the flu that never goes away.
The onset of Fibromyalgia usually occurs following a traumatic event. In many cases a triggering event can be identified, such as surgery or an automobile accident, or an emotional trauma; i.e., death of a loved one, etc. Even in cases in which the full-blown syndrome develops after a triggering event, a medical history frequently suggests a high lifetime incidence of related conditions. Studies suggest that there may be a genetic tendency toward the development of this disorder.
It is common for fibromyalgia to coexist with other disorders. However, a doctor must be careful before attributing the patient's symptoms to another coexisting disorder. For example, even if a patient is found to have abnormalities on various test results, or if evidence of an inflammatory disorder (systemic lupus erythematosus, rheumatoid arthritis, Lyme disease, HIV) is found, fibromyalgia may be responsible for the majority of the symptoms.
PWFMS have abnormalities in their neurotransmitters and chemical imbalances. In my world, that means sometimes our brains get short circuited for periods of time. Among the chemicals that are in short supply is serotonin. Seratonin controls both depression and pain.
The cognitive impairments are the most difficult to accept and deal with. Problems with concentration and short-term memory are common. I often think one thing and say another; know the word I'm searching for but can't find it, usually I know the letter it starts with. I can be in the middle of a sentence and suddenly have no idea what I was saying or going to say. I have huge gaps in my memory of years gone by -- in particular I regret losing some of those memories during the time my children were growing up. At times I have difficulty in concentrating and I am easily distracted.
There is no cure for Fibromyalgia. It can, however, be managed to some extent. Without an effective pain management plan, care for PWFMS can be frustrating, time-consuming and expensive. Some medications help to obtain sleep and relax our muscles that never completely rest. No medication short of general anesthesia can eliminate the pain.
A regular sleeping schedule is essential. PWFMS do not achieve the stage IV sleep when Mother Nature comes in to restore and replenish our muscles and bones. Gentle aerobic exercise should be done daily as tolerated. In the world of FMS "no pain, no gain" is NOT the case. Above all else, maintaining a good attitude is the most important single thing a PWFMS can do to help themselves.
In my opinion, a PWFMS must first accept they have this condition. It is vital to learn all you can about it. Use that information in order to cope and live with Fibromyalgia Syndrome as best as you can. It involves a completely new lifestyle and is, without a doubt, the hardest thing I have ever attempted, but it CAN be done!
There are many excellent books on FMS available. One, written by a doctor with FMS, is The Fibromyalgia Survivor by Mark J. Pellegrino, M.D. It can be ordered from Anadem Publishing, Inc., Columbus Ohio. (614)262-2539. It is available through most bookstores.