According to the Centers for Disease Control and Prevention (CDC), approximately two percent of the US population is affected by fibromyalgia and the ratio of women to men is 7:1. But, are these statistics accurate?
Study design and the use of scientifically approved tools for measuring results is the benchmark for research. But, most important is an accurately defined study participant pool. First of its kind research using a community-based survey of 3,410 potential patients and a retrospective review of medical records of potential cases suggests patients, particularly men, are unlikely to be diagnosed with fibromyalgia.
The 2016 Revisions to the 2010/2011 Fibromyalgia Diagnostic Criteria appear to address previous concerns, and now conclude:
“This revision combines physician and questionnaire criteria, minimizes misclassification of regional pain disorders, and eliminates the previously confusing recommendation regarding diagnostic exclusions… The self-report version of the criteria is not valid for clinical diagnosis in individual patients but is valid for research studies.”
However, some doctors still rely on the tender point model as does Social Security, see disability ruling SSR 12-2p: Titles II and XVI: Evaluation of Fibromyalgia. There are good arguments for doing away with the tender point count, and there are good arguments for keeping them. I suppose that is why the ACR does not completely exclude the tender point examination in their recommendation. The tender point count was the criteria when I was diagnosed. And, my FM/a® test results were astoundingly high, so for me—the criteria worked. But, does the tender point count work in diagnosing men? The consensus on this varies, too. Another disparity—few fibromyalgia studies include male subjects.
The FM/a® test will be used to identify fibromyalgia study participants for the genome study, just announced. So, there is hope and we are moving forward. I believe that if we can consistently identify patients using this blood test, and scientists are able to replicate the findings, we make a quantum leap for future research and a better understanding of fibromyalgia as a disease. To say that I am excited about this research is undeniable. I did have the FM/a test, I was positive, and I will be participating in the genome study.
Most agree there are four recurring characteristics:
- Body-wide pain and/or tenderness (The American College of Rheumatology [ACR], suggests assessment for a total of 19 painful areas on the body and their severity.)
- Dysfunctional, non-restorative sleep
- Cognitive disturbance (fibro fog)
Fibromyalgia comorbid disorders – disorders that co-occur more frequently with fibromyalgia than with other diseases or syndromes
Comorbid disorders or signs (Resources: CDC, NIH, and the ACR. (Accessed, April 14, 2017)
- Headache, severe, chronic*
- Morning stiffness*
- Tingling or numbness in hands and feet*
- Depression or anxiety
- Digestive problems, such as abdominal pain, bloating, constipation, irritable bowel syndrome (IBS), or gastroesophageal reflux disease (GERD)*
- Pelvic pain, including irregularities with menstruation*
- Irritable or overactive bladder*
- Restless legs syndrome*
- Sensitivity to loud noises or bright lights
- Temperature sensitivity
- Temporomandibular joint dysfunction (TMJ/TMD)*
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*Conditions that could be related to myofascial pain syndrome (MPS). This is important because there are specific, hands-on, treatments for MPS.
The CDC, National Institutes of Health (NIH), and ACR agree that we are more likely to develop fibromyalgia if a rheumatic disease such as osteoarthritis, lupus, rheumatoid arthritis, or ankylosing spondylitis is present. The presence of other painful disorders is a usual finding as noted in my review, The 2013 Fibromyalgia Alternative Diagnostic Criteria: Interpretation for Patients and Providers.
Though there are studies that have varying hypotheses, some proven, some not, there are factors in diagnosing fibromyalgia that are quite consistent. Because of this— fibromyalgia should NOT be a diagnosis of last resort.
It’s important for our doctor to know what they are treating and how we relate our symptoms to our physician can make a difference in getting the right diagnosis. The bottom line is if something is nagging at you, share it with your physician. You can find suggestions on how to do that here.
given the chance to work though difficult problems.”
Celeste Cooper, RN, is a frequent contributor to ProHealth. She is an advocate, writer and published author, and a person living with chronic pain. Celeste is lead author of Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain and Broken Body, Wounded Spirit, and Balancing the See Saw of Chronic Pain (a four book series). She spends her time enjoying her family and the rewards she receives from interacting with nature through her writing and photography. You can learn more about Celeste’s writing, advocacy work, helpful tips, and social network connections at CelesteCooper.com.