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

Luciene Oliveira; Érico Augusto Barreto Monteiro; Walter Lisboa

doi:10.63231/2595-0118.20250031-en

Original Article

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

Percepção de pacientes com fibromialgia sobre diagnóstico, convívio e impacto psicológico da doença

Luciene Oliveira; Érico Augusto Barreto Monteiro; Walter Lisboa

http://dx.doi.org/10.63231/2595-0118.20250031-en BrJP, vol.8, e20250031, 2025

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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

Resumo

JUSTIFICATIVA E OBJETIVOS: A fibromialgia é caracterizada por dor generalizada, alterações no sono e fadiga, o que afeta o estilo de vida, relações laborais e interpessoais das pacientes. Este estudo objetivou investigar a percepção de pacientes com fibromialgia sobre sua experiência com a doença.

MÉTODOS: Pesquisa qualitativa com entrevista semi-dirigida, com 10 mulheres. Os dados foram submetidos à análise de conteúdo e organizados em quatro categorias.

RESULTADOS: O processo até o diagnóstico foi descrito como complexo e demorado, associado muitas vezes ao sentimento de desamparo, desesperança e, em alguns casos, ideação suicida. A dor e o comprometimento cognitivo foram relacionados a prejuízos na vida pessoal e profissional. A falta de suporte familiar e a invalidação da dor estiveram associadas à exacerbação do sofrimento emocional e da sintomatologia ansiosa e depressiva. Apesar das dificuldades, alguns pacientes relataram aceitação da doença e melhora com abordagens multidimensionais, suporte familiar e de grupos de apoio. A incompreensão social sobre a experiência álgica foi citada como motivo para o isolamento, intensificando a estigmatização e agravando quadros depressivos e ansiosos. Esses efeitos negativos da fibromialgia na qualidade de vida, nas interações sociais e na saúde mental endossam o caráter subjetivo da dor e a necessidade de incluir o cuidado psicológico no tratamento de tais pacientes.

CONCLUSÃO: A fibromialgia, além dos sintomas físicos, apresenta um impacto socioemocional significativo, estando comumente associada a sintomas depressivos e ansiosos. Esses fatores demandam uma abordagem interdisciplinar que compreenda e trate a doença em suas múltiplas dimensões, promovendo maior suporte às pacientes.

Palavras-chave

Capacidades de enfrentamento; Dor crônica; Fibromialgia

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Submitted date:
09/06/2024

Accepted date:
04/23/2025