Living well with complex regional pain syndrome: a qualitative exploration of lived experiences

Complex regional pain syndrome (CRPS) is frequently considered a limiting and distressing condition. However, there is variability among individuals with CRPS, with some maintaining meaningful lives despite their condition. This study aimed to understand how people learn to live well despite experiencing long-term CRPS. Participants were adults diagnosed with CRPS more than 12 months ago, who self-identified as “living well” with CRPS. Transcribed in-depth interviews were analysed using reflexive thematic analysis. Participants (<i>n</i> = 10) described living well with CRPS as the product of a journey from times of not living well: “Living <i>against</i> CRPS” to “Living well <i>with</i> CRPS.” Three themes supported participants’ journey: 1) <i>Making sense of my new life with CRPS</i>: Through diagnosis and information seeking, participants developed a personalised understanding of their experience of CRPS. 2) <i>Taking control in a seemingly uncontrollable world</i>: Through professional and social support, participants trialled various self-management tools to regain control of their lives. 3) <i>Rebuilding a purposeful life with a new identity</i>: Through acceptance and rebuilding purpose, participants reconstructed a new post-CRPS identity. “Living well <i>with</i> CRPS” was described as restoring one’s sense of self through sensemaking, adjusting, and accommodating to maintain engagement in meaningful activities and life roles. Living Well With Complex Regional Pain Syndrome Living well with Complex Regional Pain Syndrome (CRPS) was defined as having restored a sense of self by focusing on rebuilding meaning whilst living alongside the painful limb.Healthcare professionals need skills to support sensemaking processes rather than adopting generic conventional pain explanations.The clinician needs to be a facilitator rather than an “authority,” acknowledging the patient as the expert in their own recovery.Healthcare professionals need to be better informed about CRPS and strategies to understand and support such shifts. Living well with Complex Regional Pain Syndrome (CRPS) was defined as having restored a sense of self by focusing on rebuilding meaning whilst living alongside the painful limb. Healthcare professionals need skills to support sensemaking processes rather than adopting generic conventional pain explanations. The clinician needs to be a facilitator rather than an “authority,” acknowledging the patient as the expert in their own recovery. Healthcare professionals need to be better informed about CRPS and strategies to understand and support such shifts.