Lived Experiences of Cognitive Dysfunction in Fibromyalgia: How Patients Discuss Their Experiences and Suggestions for Patient Education

Abstract

Cognitive dysfunction (CD) is a common, impairing symptom experienced by persons with fibromyalgia (FM). This study explored how individuals with FM describe their experience of CD in an online peer support environment. Posts referencing cognitive symptoms were extracted from two Facebook FM peer support groups at two timepoints. Using inductive Thematic Analysis, key discussion themes were identified and compared across groups and time. Four themes represented the way members described their cognitive experiences in FM: understanding and describing CD experiences, distrust of cognitive abilities, choosing between pain and medication side effects, and misunderstanding and judgement from others. Two themes represented the impact of CD on members’ lives: impaired social interaction and loss of identity. Group members described broad impairments in daily functioning that significantly and negatively impacted their quality of life, indicating CD symptoms may play a more prominent role in the FM experience than previously understood. An infographic is included to aid patient education and help facilitate patient-provider discussions of CD symptoms.