Rachel Bolton, Fliss Smith, Jennifer S Lewis, Jennifer Pearson
Participants reported emotional and practical challenges in balancing PA and SB, influenced by fluctuating symptoms, expectations and limited or unrelatable clinical advice. These findings highlight the need for personalized, inclusive, and context-sensitive movement advice that reflects lived experience to improve relevance and uptake.
OBJECTIVES: To explore how individuals with fibromyalgia (FM) perceive physical activity (PA), sedentary behaviour (SB) and related health messaging.
METHODS: UK-based adults (18+) with FM were recruited using maximum variation sampling from charities, social media support groups and research contacts. A constructivist qualitative approach was adopted, recognizing that experiences and meanings are constructed through social context and interpretation. Semi-structured interviews were conducted virtually, informed by a behavioural model of Capability, Opportunity and Motivation (COM-B) and the Theoretical Domains Framework (TDF). A patient and public involvement (PPI) contributor informed the development of the interview guide. Data were analysed using a reflexive thematic analysis to explore how participants interpreted SB, PA and health messaging.
RESULTS: Fifteen participants (13 female, 2 male) aged 21-73 years (mean = 50.87, SD = 15.47) described complex, often conflicting experiences of PA and SB. Emotional responses like guilt, fear, and frustration influenced engagement with PA. Rest and activity were viewed as beneficial; however, balancing movement and rest was an ongoing challenge, influenced by fluctuating symptoms and external expectations. Participants highlighted a disconnect between clinical advice and lived experience, with terms like 'sedentary' often perceived as unrelatable or stigmatizing. Socioeconomic factors, including limited access to personalized support and social rules, impacted engagement and contributed to feelings of stigma.
CONCLUSION: Participants reported emotional and practical challenges in balancing PA and SB, influenced by fluctuating symptoms, expectations and limited or unrelatable clinical advice. These findings highlight the need for personalized, inclusive, and context-sensitive movement advice that reflects lived experience to improve relevance and uptake.