"Not all in my head": a qualitative exploration of living with fibromyalgia and its treatments

Abstract

Background: Fibromyalgia is a complex condition which causes pain, sleep disturbance, fatigue and distress, limits the capacity to work and damages relationships. Aetiological and diagnostic uncertainty and the lack of effective treatments further complicate the lives of patients. To develop effective and acceptable interventions it is essential to understand the patient's expectations and perceptions of their experiences and existing treatment options. Methods: 14 people with fibromyalgia, recruited via online support networks, participated in in-depth interviews about their experiences of living with and being treated for fibromyalgia. Data collection and analysis were guided by an interpretative phenomenological approach Findings: Six themes were generated: Inauthenticity of Fibromyalgia; An Unconventional healthcare experience; Re-creating support networks; Challenging the working identity; Threatening the family dynamic and Fighting, accepting or accommodating? The theme Inauthenticity of Fibromyalgia was central and underpinned these participant accounts, leading to the repeated assertion that fibromyalgia wasn’t simply "in their head". Discussion: Analyses suggested that chronic illness threatens identity, and disrupts lifestyle, roles and relationships, challenges which are exacerbated when the illness is not adequately recognised. Leventhal's Self-Regulation Model highlights the importance of individual and social interpretations in coping with illness. These findings suggested that the perception of contested authenticity of fibromyalgia was a dominating feature of these participants' lives and treatment experiences. The results informed the design of a national survey to capture variations in symptoms, experiences and treatments from a larger, national sample. Outcomes will help guide the development, targeting and trial of an intervention based upon user perspectives.