Everyone who gets a diagnosis of fibromyalgia is inheriting a syndrome with no known cure, which infiltrates every part of their lives, and which they could pass on to their children. But it is also unknown territory—some doctors do not even believe the syndrome exists. In March of 2008, I received a diagnosis of fibromyalgia.
I had been practicing pediatrics for 18 years. I had learned about fibromyalgia in medical school and residency, but like many pediatricians, thought I had never seen a case. I was taught that in order to be diagnosed with fibromyalgia, an adult would need to fulfill established criteria: having long lasting pain in specified areas of the body. I had no idea that a person could have fibromyalgia without intense widespread pain, or that almost every organ system could be effected. I had no idea a toddler could be diagnosed with juvenile fibromyalgia. Looking back, I now know that some of my puzzling pediatric cases had fibromyalgia, and I missed the diagnosis because I didn’t know what I was looking for.