Background/Purpose: Fibromyalgia (FM) is a common chronic widespread pain disorder with comorbid symptoms of fatigue, sleep disturbance, cognitive dysfunction and depression.  It is believed to be a central pain processing disorder.  Results of a recent patient survey conducted in the United States showed that those diagnosed with FM are misunderstood regarding condition severity, debilitating pain experienced and the impact it has on their lives.  These factors may lead to damaged relationships, lost productivity and a general inability to perform daily tasks.  In this assessment, we evaluated pain descriptors provided by FM survey respondents as well as baseline SF-36 vitality scores from 4 clinical trials to better understand the patient experience with FM pain and FM health status burden.

Methods: The Functioning with Fibro Survey was carried out in August 2013 and included 1,223 Americans ≥18 years old with fibromyalgia.   Participants had received an FM diagnosis from a healthcare provider and provided survey responses through an online data collection tool.  Separately, SF-36 vitality scale baseline data from 4 placebo-controlled Phase 3 FM clinical studies was assessed (range: 0-100; higher = better functioning). Subjects across the 4 clinical studies had FM diagnoses (1990 ACR criteria) with mean baseline pain scores ≥4 (0-10; higher = worse pain), and scores ≥40 mm on a Visual Analog Scale (range: 0-100; higher = worse pain).

Results: Survey results demonstrated that fibromyalgia pain is experienced differently across FM patients.  In response to the survey question, “If you had to describe to a friend how your fibromyalgia pain feels, which of the following situations comes closest to what you would say?”, the following was observed: radiating pain all over: 30%; getting run over by a truck: 28%; constant flu-like ache: 23%; stabbed by a knife: 10%; strenuous workout: 10%

Baseline mean SF-36 vitality scores ranged from 18.4 to 27.6 across the 4 clinical trials. For comparison, normative data for the US general population for women between ages 45–54 in 1998, was 60.6 (mean); standard deviation 21.3 (Hoffman et al. Int J Clin Pract. 2008:115-126). 

Conclusion: Fibromyalgia patients often experience debilitating pain which may impact multiple areas of their lives.  In a patient-rated survey of over 1,200 FM sufferers, pain was characterized in different ways but all were descriptive of debilitating pain.  SF-36 vitality scores at baseline from 4 FM studies confirmed significant vitality impairment. These scores reflected lower vitality than what has been reported for many other health conditions widely accepted as impairing, including COPD, congestive heart failure, diabetes, clinical depression, RA, OA, SLE, primary Sjogren’s Syndrome and Myofascial Pain Syndrome (Hoffman et al). Decreases in vitality scores are significantly associated with increased odds of negative outcomes, including inability to work due to health, job loss, increased hospitalization, and short and long-term mortality (Bjorner et al. Curr Med Res Opinion. 2007:731-739). These data underscore the important health burden in people with FM.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/facing-fibromyalgia-how-patients-describe-their-symptoms-based-on-a-retrospective-evaluation-of-a-patient-survey-and-vitality-assessment-in-clinical-trials/