Journey of Hope for Patients with Fibromyalgia: From Diagnosis to Self-Management-A Qualitative Study.

BACKGROUND/

objectivesFibromyalgia syndrome (FMS) is a chronic, debilitating condition characterized by widespread pain, fatigue, and psychological distress. There is a lack of qualitative studies on the unique experiences of patients with FMS in Arab countries, particularly through social media. Despite the availability of diagnostic criteria, diagnosing and managing patients remains challenging. This study aimed to describe the experiences of patients with FMS in Arab countries, their understanding of the illness, and perceptions of treatment.

methodsA qualitative study was conducted using a content analysis of patients' narratives published in a supportive group, describing their experiences with fibromyalgia. The dataset included 2305 quotes from 192 main posts and 2113 comments collected between 2019 and 2024.

resultsThe analysis of the posts and associated comments revealed six main themes: patients' experiences with the syndrome, symptoms, searching for a doctor, pharmacological management, self-management, and the impact of fibromyalgia and peer support. Most posts and comments focused on patients' experiences with self-management approaches and coping strategies, highlighting significant noncompliance with therapeutic modalities. Factors influencing patients' experiences and decisions included their relationship with physicians, medication side effects, personal fears, and physical and mental health.

conclusionsPatients with FMS in Arab countries face similar challenges to those in other regions, including physical, psychological, social, and economic impacts. Many patients reject conventional therapeutic management strategies and adopt coping mechanisms to mitigate adverse effects and healthcare costs. The findings suggest that the physician-patient relationship, as well as the physician's knowledge and attitude toward fibromyalgia syndrome, are the cornerstones of gaining patients' trust.