Variations in Current and Desired Limb Perception in Complex Regional Pain Syndrome

People with Complex Regional Pain Syndrome (CRPS) often experience body perception disturbances, whereby features of the affected limb are perceived as distorted. However, these disturbances vary widely between individuals, as does the effectiveness of treatments aimed at altering body perception. It remains unclear whether such variation reflects distinct underlying patterns of disturbances and whether individuals differ in how they would change their limb perception.

We conducted an exploratory online survey to examine current and desired perceptions of the affected limb in people with CRPS. 115 people with CRPS reported the severity of visual and felt disturbances in the perceived size, shape, position and definition of their affected limb, as well as any changes they would like to make to this perception.

Three clusters of body perception disturbances were identified, differing in the degree of perceptual distortion from a typical limb and in the level of multimodal discrepancy. These clusters were associated with differences in the severity of other CRPS symptoms. Another three clusters were identified based on desired perceptual changes, with most respondents seeking alterations that did not simply involve returning the limb to a normal state.

These findings challenge the common practice of treating body perception disturbance as a single symptom in CRPS. They illustrate the value of recognising how disturbances manifest and show that individuals' desired perceptual changes often diverge from traditional rehabilitation methods aimed at normalising the limb. Future work should explore tailoring rehabilitation to individual body-perception profiles.

Body-perception disturbance in CRPS is not a single construct, but comprises distinct patterns linked to clinical severity. Many individuals do not wish their limb to simply be normal, challenging core rehabilitation assumptions. These insights demonstrate substantial heterogeneity in how people with CRPS perceive their limb and how they want it to be. This highlights the need for personalised, patient-centred approaches to body-perception-focused pain management in CRPS.