Background/Purpose: Fibromyalgia (FM) is a chronic, widespread pain disorder driven by dysregulated central pain processing which substantially impairs daily function and quality of life. Approved pharmacotherapies are limited, with no new options introduced in over a decade, and many patients continue to experience burdensome symptoms and impaired daily function despite treatment. A survey of US patients was conducted to understand the current lived experience of people with FM, including their diagnostic journey, impact of disease, and treatment experience.

Methods: The survey was conducted from August-September 2024 among adult patients (≥18 years old) in the US with self-reported FM diagnoses. Respondents, recruited by a third party across a wide range of demographic and care settings, completed a 30-minute online survey assessing diagnosis experience, symptom burden, treatment history, and symptom control.

Results: The survey comprised 500 respondents (94% female). Mean age at diagnosis was 37 years. The average self-reported time of symptom onset was 17 years prior to the survey. On average, nearly 3 years passed between symptom onset and seeing a healthcare provider. Respondents were most often diagnosed by rheumatologists (42%), primary care providers (PCPs; 25%) and pain specialists (9%). Half reported their FM was currently managed by a PCP, 33% by a rheumatologist, and 13% by a pain specialist. On average, respondents reported experiencing 6 symptoms in the past week; the most prevalent were pain (96%), fatigue (95%), and muscle stiffness/tenderness (88%). Although pain was most common, it was rated less burdensome than waking very tired and lacking energy. The most common comorbidities were anxiety (51%), migraine (48%), and depression (40%); patients reported 5 comorbid medical conditions on average. Most (93%) reported that FM interfered with their ability to accomplish weekly goals. Among respondents, 46% were taking multiple medications for their FM, 36% were taking a single medication, and 19% had discontinued pharmacotherapy. Among current medications, off-label therapies were most common; most frequently SSRIs/SNRIs or gabapentin (30% each), cyclobenzaprine (20%), and trazodone or tramadol (13% each). Mean duration of use was ≥5 years for all medications, yet 57% of patients described their FM as not well- controlled. Among those who discontinued medication, 68% cited intolerable side effects and 51% lack of efficacy as reasons; cognitive impairment was the most common side effect leading to discontinuation. Nearly two-thirds of all respondents expected medication to offer only partial relief from their symptoms, and 77% expressed concern they would never be pain-free.

Conclusion: This survey found patients with FM frequently experience persistent, burdensome and impactful symptoms, even after years of treatment. Symptom relief and treatment satisfaction were limited, and expectations for future improvement were low. Use of off-label and combination therapies was high, and rates of discontinuation due to side effects or lack of efficacy were common. These findings highlight the continued substantial burden of FM and the need for more effective and better-tolerated treatment options.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/symptom-burden-and-treatment-experience-in-fibromyalgia-results-from-a-national-patient-survey/