La fibromyalgie est un syndrome douloureux chronique au cours duquel de nombreux domaines de la qualité de vie sont altérés. La prise en compte du vécu de la souffrance des patients est donc de première importance. Notre objectif principal est d’explorer l’expérience subjective de la maladie inscrite dans un contexte personnel, familial, social et médical. Cette démarche se veut qualitative, holistique et centrée sur le patient. Vingt-deux patients fibromyalgiques ont participé à des entretiens non directifs, soit individuellement, soit en groupe. La retranscription des entretiens est analysée pour identifier des unités qui, suivant des règles d’exhaustivité, de non-redondance et de non-sélectivité, ont été organisées en 26 thèmes de premier ordre. Deux étapes ont suivies les mêmes principes, permettant d’identifier 16 grands thèmes dans l’expérience subjective de la fibromyalgie répartis dans cinq domaines distincts : les conséquences sur le plan psychologique, dans la vie quotidienne, sur le plan interpersonnel, le vécu du parcours médical et enfin les conséquences économiques et sociales.

Fibromyalgia is a non-articular rheumatological syndrome belonging to the group of painful musculoskeletal diseases affecting 2% of a mostly female population (90%). Fatigue, anxiety, depression, sleep disorders and poor quality of life are highly prevalent in these patients. Fibromyalgia is an individualized syndrome with an important psychological, familial and social impact and poses some intriguing questions that remain unanswered to researchers and clinicians. The definition of this disease is still incomplete and does not include all persons suffering from an “illness” of which it may be a component. Therefore, understanding the impact of fibromyalgia on quality of life could be a useful step to improve its diagnosis, follow-up and treatment. This article aims to explore the nature of subjective experience in fibromyalgia. Examples taken from interviews with people who have fibromyalgia will be used to illustrate these domains. Twenty-two patients (19 women and three men), 35 to 63 years old (mean: 50.4±6.9 years) from a fibromyalgia population diagnosed according to the criteria of the American College of Rheumatology, were recruited from a general outpatient clinic in the North of France. The interviews, either individually, or in group, were recorded or transcribed, and the responses were explored using a qualitative analysis to produce a thematic account. The examples used to illustrate the conceptual discussion in this article are drawn from the transcripts of these interviews. Each of the transcripts was analysed by noting relevant items, coding emergent themes and compiling a preliminary list of themes. Closely related themes were grouped together under appropriate higher-order themes and clustered into sets consisting of higher-order themes and sub-themes. This resulted in a complete hierarchically-organized summary list of themes. These various steps helped identify 16 broad topics in the subjective experience of fibromyalgia which were distributed in five distinct fields: psychological consequences (impact on mood, helplessness feeling, consequences on self-concept), impact on everyday life (fatigability, functional difficulties, hyperactivity), interpersonal level (lack of understanding, isolation, impact on family, impact on intimacy), living with a medical course (physician/patient relation, medical wandering, delivery of diagnostic) and the economic and social consequences (administrative recognition, professional and social consequences, financial problems). Fibromyalgia is a chronic pain condition and the diagnosis is likely to be made months after the onset of the first symptoms. Fibromyalgia is not an unusual diagnosis and for patients it has a major negative impact on their quality of life. The interest in exploring the subjective experience of the disease is discussed as well as that of the research field from a clinical point of view. Fibromyalgia is a functional somatic syndrome, which cannot be explained in terms of a conventionally defined medical disease. The constructivist perspective shows that fibromyalgia diagnosis may be constructed in the interaction of patients and physicians, and of their respective representations of disease or illness. Qualitative and quantitative empirical prolongations were also considered as well as the use of these results in psycho-educational groups within a multidisciplinary care. Information of the patient and natural caregiver, together with the help brought by patients associations remain essential.