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Background: The management of fibromyalgia-related pain constitutes a challenge for both healthcare professionals and patients. Fibromyalgia (FM) patients’ perspectives, which are invaluable for informing treatment effectiveness, are often overlooked and undervalued, hindering the consistent application of patient-centered approaches. In the context of educational interventions, individuals perceiving educational materials as personally relevant reported improved pain management and increased physical activity, underscoring the importance of mitigating the epistemic injustice faced by this patient group and integrating their needs and preferences into educational treatment plans.
Objectives: This qualitative study aimed to explore the pain experiences of women diagnosed with FM and their perspectives on both prescribed treatments and self-management strategies for pain relief.
Methods: This qualitative study involved a theoretical sample of twenty-one adult women with FM from Spain. Participants were selected based on predetermined criteria to ensure a heterogeneous group in terms of age, education level, employment status, civil status, and involvement in FM associations. Data were collected using in-depth semi-structured personal interviews following a guide of open questions. Interviews were carried out by the first author and lasted between 30-55 minutes. A thematic analysis supported by the qualitative analysis software Nvivo12 was adopted. Two researchers assigned open codes to transcribed sentences, summarizing their meaning and creating groups of codes according to similar meaning, subsequently creating sub-themes and themes. Study rigor was ensured by following Lincoln and Guba trustworthiness criteria for qualitative research.
Results: The findings were organized under two themes and seven subthemes. Theme 1: Experience of pain included three subthemes: i. Consequences of pain: loss of independence, social withdrawal, and psychological distress; ii. Self-blame and regret, iii. Pain separation and pain enmeshment. Theme 2: Perspectives on prescribed treatments and self-management included four subthemes: i. Pharmacological treatment as the primary approach: doubts about effectiveness and impact on self-identity; ii. The importance of living in the present and accepting emotions; iii. Experiential and thought avoidance; iv. Needs and preferences regarding receiving information about pain and its management. Constant pain installed a sense of desperation in participants, undergoing a complete transformation as they adapted to accommodate pain into every aspect of their lives. This distress could become so overwhelming that they reported contemplating suicide as an escape. Major factors underlying self-blame were having a sedentary lifestyle and poor emotional self-regulation, with participants reporting feelings of being overwhelmed and unable to manage their emotions. Participants experienced ‘pain enmeshment’; their pain was an integral part of their personality or something that fundamentally altered their identity and social participation. The use of pain medication often led to feeling helpless and frustrated, as participants struggled to find a balance between managing their pain and maintaining their identity. Meditation and mindfulness were reported as being frequently used, with positive results including not dwelling on the past or worrying about the future. The participants expressed that pain was compromising their daily life, but when asked if they thought about their pain, they answered ‘no’ or that they try not to think about it, using other activities as a distraction, including eating. Avoidance was also identified with respect to emotions and physical sensations. Participants felt that people didn’t want to hear or talk about pain, so they avoided these conversations to prevent being/feeling stigmatized. When information about pain was provided by healthcare professionals, participants described it as unintuitive, poorly adapted to their needs, and not correlating with their reality, increasing stigma.
Conclusion: Pain has a profound impact on FM patients’ self-identity with pain becoming an integral part and defining who they are as persons. The stigma surrounding invisible pain leads to public downplaying, complicating interpersonal relationships. Reservations about pharmacological treatments extend to concerns about their lack of effectiveness and the impact on self-identity. Psychological therapies, notably meditation and mindfulness, received positive recognition. The results highlighted the need for a comprehensive understanding of fibromyalgia pain experiences to provide tailored patient-centered interventions.
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Acknowledgements: NIL.
Disclosure of Interests: None declared.
© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license (