Des entretiens détaillés avec 40 patients atteints de fibromyalgie en provenance de trois pays (États-Unis, Allemagne et France) révèlent que la fatigue est le deuxième symptôme le plus ennuyeux après la douleur.

La recherche était motivée par des études antérieures incluant des commentaires de patients selon lesquels la fatigue était un symptôme digne d’être évalué dans les essais de traitement. À l’heure actuelle, le succès d’une thérapie dépend principalement de l’efficacité avec laquelle il réduit la douleur liée à la fibromyalgie, avec peu ou pas d’attention portée à la fatigue. De plus, il n’ya pas de compréhension claire des caractéristiques clés de la fatigue à mesurer.
Au cours des entretiens, des questions ouvertes ont été posées aux patients, telles que: “Parlez-moi de votre expérience de fibromyalgie.” Par conséquent, l’objectif des entretiens n’était pas de poser des questions spécifiques sur la fatigue, car les chercheurs voulaient savoir ce que les patients avaient. Dites spontanément vos symptômes.
La durée moyenne des symptômes de la fibromyalgie pour les 40 participants était de 6,6 ans, leur moyenne d’âge était de 49 ans et 70% d’entre eux étaient des femmes. Interrogés sur leur expérience de la fibromyalgie, ils ont signalé les symptômes suivants, sans aucune indication:
- douleur (78%)
- fatigue (43%)
- difficultés à dormir (18%)
- problèmes de mobilité (10%)
Rappelez-vous, ceci était basé sur vos commentaires non sollicités sur la fibromyalgie. Lorsqu’on leur a demandé d’évaluer les trois principaux symptômes, l’ordre était essentiellement le même, mais les pourcentages étaient beaucoup plus élevés.
“La fatigue liée à la fibromyalgie a été décrite comme une sensation de fatigue accablante qui n’a pas été atténuée par le sommeil ou le repos et n’est souvent pas proportionnelle à l’effort (c.-à-d. Les participants ont décrit la fatigue après avoir très peu fait).” , affirment les auteurs. Les participants ont également précisé que leur fatigue liée à la fibromyalgie n’était pas simplement une “fatigue normale”.
Les participants ont décrit leur fatigue de manière plus détaillée dans les huit catégories suivantes, auxquelles bon nombre d’entre vous peuvent probablement s’identifier:
- Sensation de fatigue accablante (43%): parfois au point de ne pouvoir rien faire.
- Pas soulagé par le repos ou le sommeil (38%): la fatigue persistait même après ce que le patient avait perçu comme une bonne nuit de sommeil
- Ce n’est pas proportionnel à l’effort fourni (63%): il ne faut pas beaucoup pour déclencher ce symptôme
- Sensation de faiblesse ou de lourdeur (28%): le corps est lourd, faible ou manque de force.
- Il est difficile de se sentir motivé (83%): il faut beaucoup d’efforts pour faire avancer les choses, comme se lever et aller de l’avant le matin
- Difficulté à faire les choses qu’ils veulent faire (60%): la fatigue / la fatigue rend difficile de faire ce qu’ils veulent ou doivent faire.
- Avoir à faire les choses plus lentement (38%): cela prend plus de temps et certains patients ont estimé que cela était lié au sentiment de lourdeur ou de faiblesse
- Difficulté à se concentrer, à penser ou à se souvenir de choses (68%): la fatigue affecte la capacité de concentration, la difficulté à se souvenir de choses, la difficulté à penser clairement ou à rester concentré
“Les hommes et les femmes ont décrit l’expérience de la fatigue et son impact de manière très similaire”, écrivent les auteurs. En résumé, dans la fibromyalgie, “la fatigue semble être le deuxième symptôme le plus important et son impact considérable sur la vie des patients”. Comme il y a tellement de symptômes de fatigue liés à la fibromyalgie, ce sera un défi. Évaluez l’impact de ce symptôme dans les essais thérapeutiques. Mais les résultats de cette étude pourraient conduire à de meilleurs outils pour mesurer avec précision la “fatigue” chez les patients atteints de fibromyalgie.
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