Background & Aims
The management of fibromyalgia-related pain constitutes a challenge for both healthcare professionals and patients. Despite the endorsement of patient-centered approaches by the EULAR, their consistent application in fibromyalgia patients is hindered due to the condition’s lack of visible physical symptoms. In addition, patient perspectives, which are invaluable for informing treatment effectiveness, are often overlooked and undervalued in the context of fibromyalgia. In this line, when implementing educational approaches, individuals perceiving the sessions as personally relevant reported improved pain management and increased physical activity. This underscores the importance of mitigating the epistemic injustice faced by this patient group and integrating their needs and preferences into treatment plans. This qualitative explored fibromyalgia patients’ pain experiences and their perspectives on pain management to foster more empathetic, personalized, and effective pain treatments.
Methods
This qualitative study involved twenty-one adult women with fibromyalgia to explore their experiences of living with fibromyalgia-related pain and their perspectives on prescribed and self-management strategies for pain. A theoretical sample was previously defined to reach heterogeneity among participants. Participants were recruited from a fibromyalgia association and a Primary Health Care Centre. Data were collected using in-depth semi-structured personal interviews and analyzed using inductive thematic analysis supported by the qualitative analysis software Nvivo12. The principle of data saturation was implemented thereby the recruitment was stopped when collecting additional data no longer provided new insight into the topic. The rigor of the study was ensured by following the trustworthiness criteria for qualitative research by Lincoln and Guba.
Results
Two themes were pre-established: 1. Experience of pain; 2. Pain management. Participants described pain as relentless, leading to loss of independence, social withdrawal, and psychological distress, with suicidal thoughts emerging. Self-blame and experiential avoidance commonly emerged in participants’ discourses. Stigma led to downplaying pain publicly. Validation and social support were crucial. Women with fibromyalgia express reservations about pharmacological treatments, feeling disconnected from their true selves and emphasizing medication’s profound influence on self-identity. Psychological therapies, especially meditation, were positively perceived. Barriers to physical activity included fear and conflicting advice. A lack of information and empathy from healthcare providers was noted. Participants seek accessible explanations and personalized non-pharmacological options. Stigma complicates patient-provider relationships, influencing treatment understanding and acceptance.
Conclusions
This study provides profound insights into the diverse experiences of women with fibromyalgia, uncovering the intricate interplay of biopsychosocial factors that shape their perception and management of pain. Pain has a profound impact on fibromyalgia 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. In essence, the study advocates for a comprehensive understanding of fibromyalgia pain experiences and underscores the necessity for tailored patient-centered interventions.
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Presenting Author
Carolina Climent-Sanz
Poster Authors
Carolina Climent Sanz
PhD
Universitat de Lleida
Lead Author
Oriol Martinez Navarro
Universitat de Lleida
Lead Author
Katrina Hamilton
Johns Hopkins University
Lead Author
Fran Valenzuela-Pascual
Universitat de Lleida
Lead Author
Daniel Whibley
MA
University of Michigan
Lead Author
Erica Briones-Vozmediano
Universitat de Lleida
Lead Author
Topics
- Specific Pain Conditions/Pain in Specific Populations: Fibromyalgia