Levels of distress vary widely among fibromyalgia patients, says Dr. Bernstein. She feels that her experience allows her to “come to see it quicker, and notice the variations earlier, so I am comfortable making the diagnosis.”
‘Some patients take an active role in the diagnostic process, recognizing their symptoms as fibromyalgia & turning to physicians to confirm their suspicions & offer a plan for treatment.’ —Brian Walitt, MD
According to nurse practitioner Carrie Schreibman at Oregon Health and Science University’s fibromyalgia clinic in Portland, most fibromyalgia patients referred for consultation to her clinic do meet the ACR criteria. The university uses a patient intake questionnaire developed by the hospital’s rheumatology clinic, which provides a basic assessment that is then augmented by the patient’s medical history and exam findings.
“I would say close to 100% of referred patients do have fibromyalgia,” says Ms. Schreibman. “Chronic, widespread pain is the distinguishing feature. Patients exhibit a range in overall symptom severity, but all have pain.” Many of her fibromyalgia patients have endured “intensive workups in the past with no answers and no treatment. Most patients receiving diagnosis feel validated and ready to start the treatment plan,” says Schreibman.
Whether or not a fibromyalgia patient’s widespread pain and other symptom severity reaches the criteria’s threshold at the time they present in clinic is not as important as the fact that they received this diagnosis from a medical professional at some point, says Dr. Clauw.
“Seeing this diagnosis in the patient’s medical record should prod the clinician that this is a different kind of pain that needs a different kind of treatment. It’s not pain out on the periphery. It’s not nociceptive pain. That’s the message that the criteria should be getting out there,” he says.
Fibromyalgia’s centralized “brain pain” occurs on a continuum in most patients, and may ebb and flow, says Dr. Clauw.
“It’s not phony. It’s a real medical condition. When a primary care physician recognizes it’s fibromyalgia, it helps point the patient in the right direction—and often a very different direction than they were on before they got that label,” he says. “I would not worry much about over-diagnosing fibromyalgia for now, because it is very much under-diagnosed.”
Susan Bernstein is a freelance medical journalist based in Atlanta.
References
- Wolfe F, Clauw D, Fitzcharles MA, et al. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res. 2010 May;62(5):600–610.
- Walitt B, Katz R, Bergman M, et al. Three-quarters of persons in the U.S. population reporting a clinical diagnosis of fibromyalgia do not satisfy fibromyalgia criteria: The 2012 National Health Interview Survey. PLOS One. 9 Jun 2016;11(6):e0157235.
