A malevolent force: A qualitative exploration of perceptions of changes in bodily function and sensations in complex regional pain syndrome

Research has established that people with complex regional pain syndrome (CRPS) experience profound changes in bodily function and sensations. However, the subjective perceptions of these changes to bodily function and sensations have not yet been explored. The current investigation aimed to qualitatively explore perceptions of changes in bodily function and sensations for people living with CRPS. The study comprised a secondary analysis of qualitative responses obtained from 288 people with CRPS from an online worldwide survey. Responses to two open-ended questions regarding the experience of changes in bodily function and sensations were analysed using qualitative content analysis. Two themes were generated, “An act of evil” and “Becoming sub-human”. Changes in bodily function and sensations were perceived by participants as a malevolent force, described by participants as volatile and hostile in nature. Furthermore, participants felt they had become sub-human due to the loss of autonomy, social exclusion, and the inability for their body to work ‘as it should.’ Future research should undertake a longitudinal examination of the experience of changes in bodily function and sensations associated with living with CRPS to fully understand the long-term impact of such changes on the individual and their quality of life. Perspective: The impacts of changes in bodily function and sensations for people living with CRPS are profound, with participants describing them as a malevolent force which robs them of their humanity.