Many fibromyalgia patients have horror stories to tell about their arduous journey from onset to diagnosis. Depending on which source you believe, the process typically takes anywhere from two to five years. My situation was far from typical. My symptoms began in childhood.
Instead of the “invisible friend” other kids had, I had pain as a constant companion. Dismissed by my mother and our family doc as “growing pains,” I learned to accept it as normal. My weak immune system provided little defense against the illnesses that raced around the classroom. If the other kids had the flu for one week, I had it for three. Some years I missed more days of school than I attended.
Insomnia was then, and remains today, a nightly scourge. On sleepless nights as a child, I’d lie in bed and focus on the parts of my body that hurt the most. I was practicing meditation before I’d even heard the word. I discovered under-the-covers reading with a flashlight at a very young age. But I wasn’t fooling anybody. My mother (an avid Jack Paar fan) occasionally whispered at my bedroom door, “Are you still awake?” Thus, I was introduced to late-night entertainers other kids my age would never meet. I heard the genius of Oscar Levant at the piano. I met the writer Jack Douglas and his Japanese wife, Reiko, and laughed out loud when they named their baby Huckleberry Hashimoto. I even saw a lady with a talking German shepherd. Perhaps my mom understood my plight better than I knew. At any rate, this access to grown-up activity made my pain more bearable.
I couldn’t run as far or as fast as other kids. I got winded or developed pain in my side if I tried. But summer vacations saved me. Every available moment was spent in a swimming pool where I could excel. The buoyancy of the water evened out the differences between my ability and theirs. To this day, I love to swim. And, fortunately for me, it’s excellent therapy for FM. In fact, a 2016 Science Daily article reported that swimming reduced pain intensity by 50 percent in a 12-week study.
The pool also was my only relief from the heat. I truly suffered in the days before air conditioning. Nausea was common when the temperature rose. My well-meaning mother’s urging to “just eat something” often resulted in losing my lunch. To this day, I don’t do well in the heat. Actually, I don’t do well in the cold, either. To compensate, I always dress in layers and leave home with clothing changes in my car.
As a child, I was embarrassed by my fragility. I wanted to be tough and adaptable like the other kids. I never wanted to be a prima donna, but my sensitive body made me one. That fact of life was a constant struggle.
Imagine my relief in 1990 when diagnostic criteria for fibromyalgia first became available. At the ripe old age of 43, I learned there actually was a name for my condition. Hallelujah! I was not the hypochondriac I always thought I was. Of course, the diagnosis didn’t cure me. But I did feel better about myself. I was less disappointed in my limitations and more proud of my achievements.
Although unanswered questions remain, juvenile-onset fibromyalgia is a recognized illness today. The Mayo Clinic estimates that 2%-6% of school children are affected by it. The majority are girls who are most likely to be diagnosed between the ages of 13 and 15. Today’s symptomatic child is less likely to be misunderstood, as I was. Once a correct diagnosis is made, helpful treatment options are available.
Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.