Variations in current and desired limb perception in complex regional pain syndrome

People with CRPS often experience body perception disturbances, where perceived features of their affected limb become distorted. However, the nature of these disturbances and the effectiveness of treatments aimed at altering body perception can vary greatly across people with CRPS. It remains unclear whether these variations represent fundamental differences in how body perception is disturbed in CRPS and whether individuals have differing preferences for how they wish to change their limb perception. We conducted an exploratory investigation to understand current and desired perceptions of the affected limb in people with CRPS. Using an online survey, 115 people medically-diagnosed with CRPS reported the severity of visual and felt disturbances to the size, shape, position and definition of their affected limb, and any changes they desire to make to this perception. We identified three distinct clusters of disturbances according to the extent to which the affected limb perception was distorted from a typical limb and the level of multimodal discrepancy, which were related to the severity of other CRPS symptoms. These findings challenge the common use of body perception disturbance as a single symptom within CRPS, illustrating the value of recognising how these disturbances manifest. We also identified three distinct groupings based on the way respondents would change their limb perception, finding that the majority did not simply want the limb to appear normal. Such patterns contradict traditional rehabilitation methods that aim to normalise the limb. This subjectivity in patient preferences suggests future work should explore tailored-rehabilitation according to differences in body perception experiences.