I was a physical therapist for twenty years, and this meant being around people in pain. For many, their pain prevented them from being able to study, work, play or even think clearly.
Fortunate, in one sense, were those whose injuries were apparent–by x-ray, by the cast on their arm, by the burn on their legs. At least nobody accused them of whining about fake ailments with no basis below the neck. “Supratentorial pain” is the polite way of saying “it’s all in their head”–i.e. crazy.
This quick dismissal was common for the many fibromyalgia patients I worked with at the pain management center where I was part of a multidisciplinary team.
Mostly women, these patients had fallen through the cracks of the health care system, dismissed as they were as “hysterical” symptoms-magnifiers with no objective cause for their complaints. Denial of their suffering only compounded their distress. Most had seen three or more doctors before they came to us. They often doubted their own sanity. Maybe it WAS all in their heads.
Fibromyalgia (FMS or Fibromyalgia Syndrome)Â has long been a diagnosis of exclusion: if nothing is found to be wrong, it must be FMS. Some of our referring doctors refused even to “reward” the patient with a diagnosis, not believing there was such a disease. The referring diagnosis simply read “chronic complaints of pain and fatigue.”
It helped me to acknowledge the reality of these patients’ shifting aches and pains because I suffered (and suffer) from a close pathological cousin to FMS known as myofascial pain syndrome. Externally, I show no evidence of injury. My pains often migrate from one place to another inexplicably. So I felt their pain, you might say.
And I also did quite a bit of research into possible causes that the sparse literature of the 90s could provide. I had quite a folder of research papers–most of them producing interesting results but no smoking gun.
That dearth of objective support for the validity of FMS has recently changed in a significant way. So if you know a FMS sufferer, do point them towards hopeful evidence that the medical community is more likely to treat them as legitimate patients. And there will soon be new approaches to treatment. And this alone may ease their pain.
Fibromyalgia solved: Not in the mind, but a very real physical ailment | Washington Times Communities
Fixing fibromyalgia pain: Relief found in REM sleep | Washington Times Communities
New research sheds light on mysterious fibromyalgia pain
Medscape Special Report: Fibromyalgia
Fred, I am so glad that you wrote this if for no other reason than to encourage folks to seek other opinions. Although, I do not suffer from FMS, years ago I was told that my symptoms were “all in my head”. (Exact words from a crass doctor.) It took visits to five different doctors before one actually made the correct diagnosis of Endocarditis. By the time I was referred to a cardiologist, it was almost too late. My heart was severely damaged. After intense treatment, I feel fine now thanks to a competent, caring doctor. I shudder to think of all the folks who become discouraged by such a diagnosis. No matter what malady is causing the suffering, a healthy dose of understanding can bring hope. Thank you.
Hooray for this research!