Noting that a diagnosis of fibromyalgia is often missed in men, Doebl et al. say their study data indicate an urgent need exists for a model of care for patients with fibromyalgia. Stefanie Doebl, a graduate student at the University of Aberdeen, U.K., and colleagues call for an approach that ensures prompt diagnosis, access to evidence-based care and long-term support for patients. They published their results in the June 2021 issue of Arthritis Care & Research.1
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The investigators began their study by contacting people who had responded to the maintaining musculoskeletal health (MamMOTH) screening survey. In the MamMOTH clinical trial, researchers recruited patients without chronic, widespread pain who were at risk of developing chronic widespread pain, defined as having regional pain, sleep disturbances, multiple somatic symptoms and/or certain illness behaviors.2 Individuals were invited to take part in the current study if they had responded to the MamMOTH screening questionnaire and indicated a willingness for future contact. Not all individuals included in the study had fibromyalgia symptoms and not all the individuals who had fibromyalgia symptoms had been diagnosed with fibromyalgia.
In 2010, the ACR released new preliminary criteria for fibromyalgia.3 The criteria removed tender points as the central element of the fibromyalgia definition, identified the importance of the widespread pain index, incorporated key fibromyalgia symptoms into the criteria and provided severity scales to measure the extent of widespread pain and symptom severity. The new criteria made it possible to evaluate fibromyalgia as a continuum of symptoms. Doebl et al. used the widespread pain index and symptom severity scale and determined that patients met the criteria of fibromyalgia if the sum of their scores on these two fibromyalgia measures was at least 12 out of 31.3
The investigators sent out a questionnaire and analyzed the responses from 85 individuals with a fibromyalgia diagnosis, 110 individuals who met the criteria for fibromyalgia but had not been diagnosed, and 133 individuals with chronic pain.
The team compared the effect of symptoms and the healthcare use of people diagnosed with fibromyalgia with those who fulfilled the criteria for fibromyalgia but had not been diagnosed, as well as with those with chronic pain. The mean age across groups was similar, at 57–59 years, but the percentage of women in the groups differed markedly: 86% of those diagnosed with fibromyalgia were women; 64% who met the criteria for fibromyalgia but had not been diagnosed were women; and 67% of those with chronic pain and no diagnosis of fibromyalgia were women. These results suggest that although women and men are almost equally likely to meet the criteria for fibromyalgia, women are more likely to be diagnosed with fibromyalgia. Moreover, that diagnosis took a long time, with patients reporting that it took an average of three years from the onset of symptoms before they received a fibromyalgia diagnosis.
The investigators also noted that most clinical studies of fibromyalgia report a very high ratio of female to male cases, even going so far as to suggest that 90% of individuals with fibromyalgia are women.4 However, in the current study, when the investigators evaluated those individuals who met the criteria for fibromyalgia but had not been diagnosed with fibromyalgia, they found the female to male ratio was closer to 1:1 (63% female in the fibromyalgia criteria group). This finding suggests that although men and women may be equally likely to meet the criteria of fibromyalgia, women are more likely to receive a diagnosis of fibromyalgia.
Patients in the fibromyalgia diagnosis and criteria groups had similar responses for symptom impact, quality of life and life satisfaction, and were worse than those in the chronic pain group for all responses. Patients with a fibromyalgia diagnosis were also more likely to be unemployed due to health issues than individuals who met the fibromyalgia criteria but were undiagnosed and those with chronic pain. Additionally, patients with a diagnosis of fibromyalgia reported more negative experiences with healthcare than those who met the criteria but were undiagnosed and those with chronic pain.
Implications for Practice
Elena Schiopu, MD, rheumatologist at University of Michigan Health, Ann Arbor, explains that she often sees patients with fibromyalgia and, because she works at an academic center, she often provides a second, third or fourth opinion.
“Fibromyalgia has a huge impact on quality of life,” she says, adding that it is associated with many common rheumatic diseases and contributes to the pain complaints of patients with rheumatic diseases. She says rheumatologists who don’t recognize the contributions of fibromyalgia to pain may treat patients with ineffective and dangerous medications.
Dr. Schiopu says that, absent a biomarker, the widespread pain index and symptom severity scale used in the study are the best ways to diagnose fibromyalgia. She provides these two questionnaires for patients to complete in the waiting room before an appointment.
According to Dr. Schiopu, patients with fibromyalgia have nervous systems that are hyperexcitable, especially under stress. Although both physical trauma and psychosocial factors contribute to fibromyalgia, psychosocial factors appear to be especially important for the generalized and durable pain associated with fibromyalgia.5 She explains that because pain is amplified in fibromyalgia, patients have difficulty interpreting the pain sensations in their bodies.
“They feel like something is wrong with their body,” says Dr. Schiopu, and because of this feeling, they may use the emergency department multiple times per month, have a great deal of dissatisfaction with the healthcare system and may frequently self-identify as being disabled.
Model of Care
Dr. Schiopu says this dissatisfaction with the healthcare system is probably warranted because the medical community still does not fully understand the pathophysiology behind the heterogeneous presentation of fibromyalgia and may demonstrate “medical animosity” to the patient. Although it’s not obvious these patients should be treated by rheumatologists, as opposed to pain specialists, patients with multi-system complaints, such as those seen in patients with fibromyalgia, are frequently referred to a rheumatologist, and thus, diagnosis and treatment of fibromyalgia are problems for rheumatologists.
Absent a good therapeutic option, Dr. Schiopu focuses on improving the patient’s quality of life, Patients may benefit from treatment from a psychologist and/or psychiatrist, she says.
This study delivers an important message, says Dr. Schiopu: Physicians need to be better at recognizing fibromyalgia and have access to a model of care for evidence-based approaches to manage fibromyalgia that will improve patient outcomes—particularly approaches for patients who wish to remain employed.
Dr. Schiopu also believes the diagnosis of fibromyalgia should be emphasized in the medical school curriculum. Until that happens, she says, “These patients end up bouncing back and forth.”
Lara C. Pullen, PhD, is a medical writer based in the Chicago area.
- Doebl S, Hollick RJ, Beasley M, et al. Comparing people who have and have not received a diagnosis of fibromyalgia: A cross-sectional survey within the PACFiND study. Arthritis Care Res (Hoboken). 2021 Jun 3. Online ahead of print.
- Macfarlane GJ, Beasley M, Scott NW, et al. Maintaining musculoskeletal health using a behavioral therapy approach: A population-based randomized controlled trial (The MamMOTH study). Ann Rheum Dis. 2021 Jul;80(7):903–911
- Wolfe F. New American College of Rheumatology criteria for fibromyalgia: A twenty-year journey. Arthritis Care Res (Hoboken). 2010 May;62(5):583–584.
- Wolfe F, Walitt B, Perrot S, et al. Fibromyalgia diagnosis and biases assessment: Sex, prevalence, and bias. PLoS One. 2018Sep 13;13(9):e0203755.
- Clauw DJ. Fibromyalgia: a clinical review. JAMA. 2014 Apr 16;311(15):1547–1555.