Understanding pain types and the lived experiences of individuals with multiple sclerosis and pain: A mixed methods study

INTRODUCTION: People with multiple sclerosis (PwMS) frequently experience pain. Whilst studies have reported pain prevalence in MS, our understanding of protean pain types remain limited. This study examined prevalence and distinct features of pain types in MS, including beliefs on whether pain is MS-related, predictability, and lived experiences. METHODS: Pain data was collected in 2021 among PwMS in Australia, including nine pre-determined pain types, with 1678 included for the quantitative component. Five focus groups were conducted, and thematic analysis was performed to themes. RESULTS: Over half of participants regularly experience pain (53.6 %). Dysesthetic extremity pain (44.6 %) and spasticity-associated pain (42.8 %) were most common. For seven pain types, over 70 % of participants attributed their pain to MS. Over 40 % had constant dysesthetic extremity pain and spasticity-associated pain. Progressive MS patients had higher rates of overall, dysesthetic extremity, and spasticity-associated pain than those with relapsing MS. Qualitative data affirmed that pain was an intrinsic part of daily life. CONCLUSIONS: Over half of individuals experienced pain, mostly attributed to MS. Findings highlight the need for multidisciplinary pain management, as most experience multiple pain requiring distinct treatments. Increasing awareness of pain burden experienced by PwMS could help improve management and health-related quality of life.