Fibromyalgia patients' perceptions of diagnosis, life and the psychological impact of the disease

ABSTRACT

BACKGROUND AND OBJECTIVES  Fibromyalgia is characterized by widespread pain, sleep disturbances, and fatigue, affecting patients' lifestyles, work relationships and interpersonal interactions. This study aimed to investigate the perception of patients with fibromyalgia regarding their experience with the condition.

METHODS  Qualitative research was conducted using semi-structured interviews with ten women. Data were analyzed through content analysis and were organized into four categories.

RESULTS  The diagnostic process was reported as complex and lengthy, being often associated with feelings of helplessness, hopelessness, and suicidal ideation in some cases. Pain and cognitive impairments were linked to disruptions in personal and professional life. The lack of family support and the invalidation of the pain experience were associated with heightened emotional distress, as well as increased symptoms of anxiety and depression. Despite these challenges, some participants reported acceptance of their condition and improvement through multidimensional approaches, family support, and participation in support groups. Social misunderstanding of the pain experience was mentioned as a reason contributed to isolation, intensified stigmatization, and worsened depressive and anxious symptoms. These negative effects of fibromyalgia on quality of life, social interactions, and mental health highlighted the subjective nature of pain and the necessity of incorporating psychological care into the treatment of these patients.

CONCLUSION  Beyond its physical symptoms, fibromyalgia has a significant socioemotional impact, being commonly associated with depressive and anxious symptoms. These factors call for an interdisciplinary approach that addresses the disease’s multiple dimensions, providing enhanced support for patients.

Keywords:
Chronic pain; Coping; Fibromyalgia

HIGHLIGHTS

The invalidation of pain and emotional suffering were reported as important factors in worsening the condition of fibromyalgia patients, while family support and support groups were reported as protective factors

The multidisciplinary approach needed to treat fibromyalgia requires health professionals to comprehend the relationship between pain and psychological aspects

Beliefs in the efficacy of exclusively pharmacological treatment, financial difficulties and access barriers compromise adherence to integrated treatment