Getting diagnosed with fibromyalgia can be a long process. It can make you feel invalid and hopeless. Maybe you're left feeling like you're making it all up when provider after provider doesn't believe your symptoms. It can be infuriating and isolating to be told that you're making up your pain.
You're not alone in this frustration. The average fibro fighter sees four physicians and experiences two years of symptoms before receiving a diagnosis.
FREE E-BOOK: The Beginner's Guide to Fighting Against Fibromyalgia
What Are the Steps to Getting Diagnosed?
Diagnosis can take an extended time because fibromyalgia symptoms mirror symptoms of other conditions. There is not a specific laboratory or radiographic test to confirm a fibromyalgia diagnosis. Instead, the diagnosis of fibromyalgia is determined after a review of medical history, a thorough physical exam, and laboratory testing. Most fibro fighters are diagnosed by a primary care physician.
To rule out other diagnoses with similar symptoms, laboratory testing may include:
complete blood count (CBC)
comprehensive metabolic panel (CMP)
thyroid stimulating hormone (TSH)
creatinine phosphokinase (CPK)
erythrocyte sedimentation rate (ESR)
C-reactive protein (CRP)
Is It Just Fibromyalgia?
The term comorbidity refers to the presence of more than one disorder in the same person. Fibromyalgia's common comorbidities include:
irritable bowel syndrome
chronic fatigue syndrome
tension or migraine headaches
major depressive disorder
systemic lupus erythematosus
Because fibromyalgia and chronic autoimmune diseases are common comorbidities, consider requesting a referral to a rheumatologist. In fact, multiple studies have shown that fibromyalgia is frequently misdiagnosed after a rheumatologist provides a different diagnosis.
How Has Diagnosing Fibro Changed Over the Years?
In 1990, the American College of Rheumatology (ACR) determined criteria for being diagnosed with fibromyalgia which included the following criteria:
History of chronic widespread pain (defined as 4-quadrant plus axial pain lasting for a minimum of 3 months)
Exhibiting mild or greater tenderness in at least 11 of 18 tender point sites
In 2010 and 2011, ACR introduced new criteria which replaced the tender point examination with reported painful regions (as measured by the widespread pain index, or WPI) as well as consideration of fatigue, unrefreshed sleep, cognitive complaints, and somatic symptoms using the symptom severity scale, or SSS.
In 2016, the ACR was revised to include "generalized pain" instead of "widespread pain" to reduce misdiagnosing regional pain syndromes as fibromyalgia.
Clauw, D. (2015). Fibromyalgia and related conditions. Mayo Clinic Proceedings, 90(5), 680–692. https://doi.org/10.1016/j.mayocp.2015.03.014
Gittins R, Howard M, Ghodke A, Ives TJ, Chelminski P. The accuracy of a fibromyalgia diagnosis in general practice. Pain Med. 2018;19(3):491-498. doi:10.1093/pm/pnx155
Jay, G., & Barkin, R. (2015). Fibromyalgia. Disease-a-Month, 61(3), 66–111. https://doi.org/10.1016/j.disamonth.2015.01.002
Taylor, M., & Morris, N. T. (2020). Beyond the criteria: Diagnosing fibromyalgia in clinical practice. Proceedings of UCLA Health, 24.
Wolfe, F., Clauw, D. J., Fitzcharles, M. A., Goldenberg, D. L., Häuser, W., Katz, R. L., Mease, P. J., Russell, A. S., Russell, I. J., & Walitt, B. (2016). 2016 Revisions to the 2010/2011 fibromyalgia diagnostic criteria. Seminars in arthritis and rheumatism, 46(3), 319–329. https://doi.org/10.1016/j.semarthrit.2016.08.012
Fibromyalgia is not a "one size fits all" diagnosis. What works for some doesn't work for others. The information provided is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. Should you have any health-related questions, please consult your physician or other health care provider promptly.
Teresa & Hannah are fellow fibromyalgia warriors. Teresa is a certified dietary manager and wellness coach. Hannah is an occupational therapist. Together, we're a mother-daughter duo on a mission to empower others to fight against fibro.