Persons with Complex Regional Pain Syndrome Renegotiate Social Roles and Intimacy: A Qualitative Study

OBJECTIVE: Persons with complex regional pain syndrome often experience allodynia, where touch is painful. Allodynia is associated with poor prognosis, but the impacts on roles, activities, social relationships, and intimacy remain unclear. There is a need to examine intimacy in complex regional pain syndrome from a lived experience perspective. METHODS: We conducted a secondary analysis of cognitive debriefing interview data from 44 persons with complex regional pain syndrome who completed a patient-reported questionnaire. Using interpretive description and thematic analysis, we analyzed items and responses addressing allodynia, relationships, and intimacy. RESULTS: Two themes were developed to understand intimacy related to the pain experience: a renegotiated social identity and participation and a reinvented intimate self. These themes included elements of a) loss of control, b) loss of shared experiences, c) feeling that their condition was misunderstood, d) a need for self-preservation, e) altered self-concept, and e) the concept of intimacy is broader than sexuality. Our findings suggest that complex regional pain syndrome has pervasive impacts on relationships and intimacy that merit discussion with their health care team. CONCLUSIONS: Persons with persistent pain need to be supported in roles and activities that allow them to express intimacy in their everyday lives.