Pain can be a significant long-term problem for a substantial proportion of persons with multiple sclerosis (pwMS). The aim of this study was to examine the course and impact of chronic pain over a span of 10-years.

A longitudinal, cross-sectional study assessed pwMS residing in the community at seven and ten years using validated measures: Visual Analogue Scale; Numerical Rating Scale; Chronic Pain Grade (CPG); Assessment of Quality of Life and the Carer Strain Index (CSI).

Mean age of the participants (n=70) was 59.8±9 years (range: 39–74 years) and majority (70%) were female. The findings show that over 10-year period, majority report bilateral lower limb dysesthesia (40%), mixed pain (35.2%) and widespread pain (17.1%). There was a significant deterioration in quality of life (QoL) in those with more severe CPG. Almost half of the participants (44%) required care either from a private carer/family or institution. The carers (n=13) reported higher carer strain (mean CSI=5.2), with over half reporting sleep disturbance, inconvenience, physical strains, family and personal constraints. Although fear of taking medications and side effects were common barriers to treatment for pain, there was an increase in the use of pharmacological treatment and healthcare services, mainly neurologists and general practitioners over time.

This study demonstrates that persistent chronic pain is a significant issue over time in pwMS, with clinical and health implications, poorer QoL, and increased healthcare utilisation. Greater awareness of chronic pain in pwMS and interdisciplinary approach is required to improve long-term patient outcomes and well-being.