Pain and activity management in hypermobile Ehlers-Danlos syndrome: a lexicometric discourse analysis

Hypermobile Ehlers-Danlos syndrome (hEDS) is the most frequent hereditary connective tissue disorder. Its primary manifestations are tissue fragility, fatigue, and chronic pain, which result in significant functional impairment. The management of activity influences functional impairment in chronic pain. Indeed, behavioural patterns characterised by activity avoidance, excessive persistence, or activity modulation will not have similar effects on functioning.
To explore the subjective dimensions driving activity patterns in hEDS.
Fifteen participants were recruited, with five representing each of the three activity patterns. Semi-structured interviews were used to explore the impact of hEDS on activity-related decision-making. Transcripts were analysed using lexicometric analysis.
Analysis identified five thematic classes: (1) Management of daily life and responsibilities, associated with an avoidance; (2) Trying to find solutions and enjoying oneself, associated with persistence; (3) Management of social relationships, associated with pacing; (4) Listening to one’s body and setting limits, associated with pacing; and (5) Impact of activities on the body, associated with persistence.
Findings highlighted the subjective dimensions underlying activity patterns in individuals with hEDS. Understanding these dynamics could inform tailored interventions to support activity engagement. Future research should explore these dynamics using longitudinal designs and mixed methods to enhance interventions.