I was a fulltime college student, raising four teenagers, and (with the help of my mother-in-law) running a 24-hour daycare out of my home. My life was full and my future bright. Then, I got sick.
On Labor Day of 1994, I was sitting in my recliner, crocheting, enjoying my day off, when I became terribly dizzy. The left side of my face began to draw, my left eye started to water profusely, and I became disoriented. For the next few days, my left arm and leg were like alien parts, not responding to ordinary commands, and I was extremely fatigued. The symptoms waxed and waned, but never left me entirely. I also experienced severe muscle cramping, numbness in my face and extremities, tremors, and periodic bouts of dysplasia. And, I began to lose my vision.
I went to my regular doctor, then a neurologist, and another, and another, in search of finding a cause behind my illness. Initially, I was told that I either suffering from a brain tumor, strokes, epilepsy, Multiple Sclerosis, or Lupus. The doctors ran test after test, each showing absolutely nothing. With each negative result, the medical professionals became convinced was that I was either a hypochondriac or suffering from depression.
For the next four years, I repeatedly sought help for the continuing symptoms and found none. I had to withdraw from school, dismantle my daycare, and delegate most of the daily activities I had performed at home to my children and my husband. I couldn't balance a checkbook, pay bills, or even take a telephone message without assistance. Where my family had always relied heavily upon me, I now had to rely on them, and it was a very difficult transition.
Finally, in 1998, I went to an endocrinologist for thyroid disease. He evaluated my symptoms and diagnosed me with Chronic Fatigue Syndrome. He told me then that very little was known about the condition but it was not a lifelong illness. He suggested I would recover within six years.
The symptoms continued to progress. I lost most of the vision in my left eye, and I lived in constant pain. I couldn't stand to be touched. I couldn't hold a glass. I couldn't walk without help. I couldn't control my body.
In April 2000, after six long years of fighting to regain control of my life, I was referred to a rheumatologist. It was then that I finally learned my true diagnosis and the extent of my disease. Not only do I have Chronic Fatigue Syndrome, I also suffer from Fibromyalgia. The combination of the illnesses amplify the symptoms and cause a malfunction of the control mechanism in my central nervous system. In short, all of my major systems, including my heart, are affected.
There is no cure and no known treatment. In fact, they have no idea how or why these illnesses develop. It was originally believed that the EB (Epstein-Barr) virus was the culprit, but research has been inconclusive. All they can do is treat the symptoms, and all I can do is learn to adjust my life to suit my rapidly changing health status. It is doubtful that I will ever be back at full capacity. I am learning to accept my limitations, although, this, to me, is the most painful part of it all.
The message that I would like to convey to others who may know someone with Chronic Fatigue Syndrome or Fibromyalgia is that these are very devastating illnesses for those who suffer with them. All we ask is for your patience, your understanding, and your occassional help. We are NOT feigning illness nor are we depressed. We are sick and struggling everyday to regain our lives.
According to the National Fibromyalgia Research Association, Fibromyalgia "produces chronic body-wide pain, which migrates and can be felt from head-to-toe. Other symptoms include persistent fatigue, headaches, cognitive or memory impairment, morning stiffness, and non-restorative sleep. . . . Recent scientific studies have shown central nervous system involvement in FMS. . . . FMS pain continues throughout a person's life."
Listening to CFIDS
American Association for Chronic Fatigue Syndrome
Cheney Clinic Info Services - Chronic Fatigue Syndrome
Physicians Guide to Fibromyalgia
Fibromyalgia Association
Fibromylgia Files
Dr. Hanson's Fibromyalgia Page
