The Sense Making of Fibromyalgia Within UK Social Systems: Thematic Synthesis of Qualitative Studies

ObjectiveFibromyalgia is a chronic primary pain condition characterised by widespread pain, sleep disturbance, fatigue and cognitive impairment. The diagnostic criteria, aetiology, and legitimacy of symptoms remains contested, leading to poor patient experiences and perceived stigma. This review aimed to synthesise experiences of adults living with fibromyalgia in the United Kingdom, and outline areas of patient care improvement in the National Health Service.MethodsA qualitative evidence synthesis was conducted following PRISMA and ENTREQ guidance. Five electronic databases were systematically searched. Data extraction and quality appraisal using the Critical Appraisal Skills Programme were undertaken independently by two reviewers. Data were analysed using inductive thematic synthesis.ResultsN = 28 studies were included in the thematic synthesis and led to four themes: (1) The constant labour of productivity and self-management in an unreliable body, (2) navigating complex and changing relationships while managing internal turmoil, (3) finding legitimacy and agency within healthcare and welfare systems, and (4) mourning the past, making sense of the present, and negotiating an uncertain future. Combined, these themes show that receiving a diagnosis required persistent work against medical dismissal, but even when diagnosed, their pain was rarely effectively management amid disjointed care. The stigma against the diagnosis was both internal for patients, and perceived from external social, healthcare, and welfare systems.ConclusionsThese findings highlight the need for pain services that provide psychotherapy and education around fibromyalgia, improved integration of specialised pain care with local healthcare services, and wider training of healthcare clinicians in fibromyalgia diagnosis.