Background & Aims

Complex regional pain syndrome (CRPS) is frequently considered a limiting and distressing condition, and previous research has focused on the difficulties of living with CRPS and the shortcomings of healthcare and society. However, there is considerable variability between individuals with CRPS, and some people with CRPS maintain employment and lead meaningful lives despite their condition. To our knowledge, no study has attempted to understand how people learn to live well despite experiencing long-term CRPS. This information could inform the development of future resources. This study aimed to understand how individuals with long-term CRPS live well despite their pain.

Methods

Data from in-depth interviews were analysed using a reflexive thematic analysis. Participants were New Zealand-based, diagnosed with CRPS (type I or II) >12 months ago and self-identified as ‘living well’ with CRPS.

Results

Participants (N=10, 70% female) described living well with CRPS as the result of a journey, and acknowledged previous times of not living well: “Living against CRPS”. Living against CRPS was characterised by symptom dominance, a loss of physical function, emotional distress, altered body perception, and a disrupted sense of self. In contrast, participants described “Living Well with CRPS” as having restored a sense of purpose, meaning and new identity, accepting the focus on living alongside their painful limb. Participants described three themes that supported their journey to living well with CRPS: 1.) Making Sense of my New Life with CRPS: Participants used information obtained through diagnosis, research and social connections, to develop a personalised and evolving conceptual model to understand CRPS. 2.) Taking Control in a Seemingly Uncontrollable World: Participants utilised professional support, evaluated and adopted selected tools for self- management, and described recalibrating to a new pace of life in order to take control of their lives. 3.) Rebuilding a Purposeful Life with a New Identity: Participants described accepting a new life with CRPS, shifting attention to focus on meaningful and purposeful activities, which contributed to a new post-CRPS identity.

Conclusions

‘Living well with CRPS’ was about understanding, adjusting and accommodating to maintain engagement in meaningful activities and life roles.

References

Nil

Presenting Author

Debbie Bean

Poster Authors

Tim McVicar

BPhty, PGDipHealSci, PGCertHea

AUT University, Auckland, New Zealand

Lead Author

Debbie Bean PhD Health Psychology

PGDipHlthPsyc

AUT University, Auckland, New Zealand

Lead Author

Bronwyn Lennox Thompson PhD

MSc

University of Otago

Lead Author

Topics

  • Specific Pain Conditions/Pain in Specific Populations: Complex Regional Pain Syndrome (CRPS)