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Patients describe their lived experiences of battling to live with Complex Regional Pain Syndrome
Journal article   Open access   Peer reviewed

Patients describe their lived experiences of battling to live with Complex Regional Pain Syndrome

Colleen Johnston-Devin, Florin Oprescu, Marion Gray and Marianne Wallis
Journal of Pain, Vol.22(9), pp.1111-1128
2021
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Patients describe their lived experiences of battling to live with Complex Regional Pain Syndrome1.15 MBDownloadView
Published Version Open Access CC BY-NC-ND V4.0
url
https://doi.org/10.1016/j.jpain.2021.03.151View
Published Version

Abstract

Phenomenology complex regional pain syndrome CRPS qualitative research lived experience chronic pain
Complex regional pain syndrome (CRPS) has never comprehensively been examined from a lived experience perspective. Patients generally have a poorer quality of life than people with other chronic pain conditions. This study aimed to understand the essence of living with CRPS. Data were collected from 17 patients via in-depth interviews. Hermeneutic discussions with four health professionals generated deeper insights. Internet blogs and a book containing patient stories were included for theme verification and triangulation. CRPS is seen as a war-like experience and five themes were identified within the battle: "dealing with the unknown enemy", "building an armoury against a moving target", "battles within the war", "developing battle plans with allies" and "warrior or prisoner of war". Patients live with a chronic pain condition and experience problems unique to CRPS such as fear of pain extending to other parts of their body. Use of the model generated by this research may assist patient/clinician interactions and guide therapeutic discussions. Support for people living with CRPS does not always exist, and some healthcare professionals require additional education about the condition. Better health outcomes are experienced by patients when their personal situation and experiences are heard and understood by health care professionals.

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Domestic collaboration
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Clinical Neurology
Neurosciences

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#3 Good Health and Well-Being

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