Management perspectives from patients with fibromyalgia experiences with the healthcare pathway: a qualitative study

Abstract

BackgroundFibromyalgia is a prevalent condition affecting 1–2% of the general population and can result in significant disability. Physicians and patients frequently encounter challenges in managing this condition.AimThe aim of this study was to explore novel management approaches through a qualitative analysis of the doctor-patient relationship.Design and settingTelephonic interviews were conducted with fibromyalgia patients to investigate their healthcare experiences.MethodsQualitative analysis was performed on patients' narratives using interpretative phenomenological analysis, a methodology that delves into each individual's subjectivity.ResultsA total of 19 adult patients with fibromyalgia, primarily middle-aged women (84% women, mean age 49.8 years), recruited from two university centers in Paris, were included in the study. The narratives of participants revealed substantial suffering and considerable functional impairment, which is paradoxical for a condition often considered benign. They reported an ongoing sense of loss of control, exacerbated by an imbalanced patient-doctor relationship. Patients constantly feared not being heard or believed, and they frequently sought attention from their caregivers. Most participants displayed significant ambivalence toward the nature of their condition and actively sought causal links. Patients' adaptive strategies sometimes worsened their symptoms, as in the case of muscular deconditioning. The healthcare system appeared deficient in managing these patients, characterized by a lack of health professional training, frequent inappropriate responses from healthcare providers, and stigmatization of psychological conditions.ConclusionDespite its perceived benign nature, fibromyalgia should be regarded as a severe condition due to its substantial long-term consequences. Participants reported a challenging experience with the doctor-patient relationship, marked by a strong sense of dependence and a lack of recognition. The care pathway for these patients appeared unsuitable and disorderly, potentially resulting in iatrogenic consequences. The management of patients with fibromyalgia should be enhanced and directed toward a patient-centered approach. The study provides practical recommendations regarding communication methods and patient care.

Early maladaptive schemas in female patients with migraine and tension-type headache

“…People who had high scores for the enmeshment/undeveloped self usually used somatization to cope with feelings of insecurity and desperation, and it was thought that these feelings might surface as physical pain 16 . It has been postulated that emotional and psychological distress may result in physical pain 23 . We suggest that it is possible to propose a similar judgement for EMS.…”

“…Self-sacrifice EMS in “orientation to the other” domain is characteristic with heavily guilt and unworthiness feelings that create self-targeted rage. Exposure to these feelings constantly and for a long time without proper coping might be a reason for experiencing physical pain in both migraine and tension-type headache patients 12 , 16 , 23 .…”

Physiotherapists’ adherence to Clinical Practice Guidelines in fibromyalgia: a cross-sectional online survey

“…These strategies are not only effective in improving depression, anxiety, or sleep disorders but, moreover, they channel the adoption of an active role in the management of the pathology from the patient, which is of paramount importance [ 15 – 17 ]. Thus, a common characteristic shared by CPGs is that the therapeutical approach of FM should be patient-centered, even though the latest publications evince that that FM is not always addressed in this manner [ 18 ].…”