A qualitative exploration of body perception disturbances and desired changes to the affected limb in Complex Regional Pain Syndrome

In Complex Regional Pain Syndrome (CRPS), perception of the affected limb is often disturbed, yet little is known about how these disturbances vary between individuals. Exploring how body perception disturbances manifest at an individual level would shed light on the exact nature of these disturbances. This research explores how people living with CRPS describe and make sense of their body perception disturbances and desired changes to their body perception. Using open-text questions in an online survey, 115 people described how the perceived visual appearance and feeling of their affected limb was distorted, and how they wished to alter that perception. Qualitative content analysis was used to classify these descriptions into categories, which were then organised into three higher-order interpretative themes. 1) Distortions to the limb’s features reflected two broad types, rescaling (a) and reconfiguration (b), but the specific nature of disturbed and desired body perception was highly individualised. 2) Wider cognitive disruptions were also described, conceptualising the limb as fundamentally wrong or unnatural, and reflecting the distressing nature of these disturbances. 3) The unstable and conflicting nature of body perception led to lost power and trust towards the limb, alongside a desire to regain a sense of a coherent bodily self. These findings challenge the view of body perception disturbances as a single construct, emphasising variability in both disturbances and individuals’ desires for resolving perceptual conflicts. Future approaches of measuring and treating CRPS should consider variability in disturbed and desired perception, to understand how to achieve a coherent body perception for each individual.