Fibromyalgie: «Apprendre à vivre avec l’omniprésence de la douleur»

À l’occasion de la Journée mondiale pour la reconnaissance de la fibromyalgie, Léa revient sur les trois ans d’errance médicale qu’elle a dû affronter avant de mettre un nom sur ses douleurs.

Léa, jeune femme de 25 ans, a été diagnostiquée fibromyalgique en 2011, trois ans après avoir développé le syndrome. «La fibromyalgie c’est avoir mal partout, tout le temps, sans une minute de répit», explique Léa. Cette maladie orpheline caractérisée par des douleurs diffuses et multiples, dans les muscles et les articulations principalement, s’accompagne souvent de troubles du sommeil, de fatigue et de troubles de l’humeur. La cause responsable n’est pas identifiée et aucun traitement n’existe. En France, on estime que ce syndrome touche 2 à 3% de la population, soit jusqu’à 2 millions de personnes.

Fin 2008, alors qu’elle vient de débuter des études de psychologie à Toulouse, la jeune femme tombe malade. «Au début c’était un simple virus hivernal. Mais au bout d’un mois je n’arrivais plus à me lever le matin alors j’ai commencé à me poser des questions», confie Léa. Celle qu’une amie d’enfance décrit comme «hyperactive et toujours joyeuse» avant la maladie, devient «amorphe» et passe ses journées à dormir.

De spécialiste en spécialiste

Le médecin traitant de la jeune femme multiplie alors les analyses médicales, en vain. «C’était un enfer! Je souffrais, j’ai même dû abandonner la fac et tous mes loisirs mais le médecin ne trouvait rien», se souvient-elle. Elle ne le sait pas encore, mais un véritable parcours du combattant attend Léa. Elle navigue de spécialiste en spécialiste, mais aucun d’entre eux n’est en mesure d’émettre un diagnostic. «Un jour une immunologue m’a tout sèchement dit qu’il fallait penser à aller voir un psychologue… Ça m’a bouleversée, il ne se passait pas un jour sans que je pleure! Heureusement mon médecin, ma famille et mes amis savaient que ce n’était pas psychosomatique», explique-t-elle visiblement émue.

Malgré la douleur, cette passionnée de musique classique tient bon, elle se repose la journée, quand tous ses amis sont à l’université, et sort avec eux le soir pour se «sentir vivante». En 2009, Léa décide de reprendre ses études. «J’ai dû passer les rattrapages à cause de mes absences à répétition mais j’ai réussi mon année», exulte-t-elle. C‘est alors que son médecin traitant la dirige vers le centre antidouleur de l’hôpital Joseph Ducuing, à Toulouse.

«J’étais prête à tout entendre tant que j’avais un diagnostic»

Après quatre mois d’attente pour obtenir un premier rendez-vous, Léa rencontre une algologue (spécialiste de la douleur, NDLR) «douce et compréhensive» qui passera plus d’une heure à lui poser des questions. La spécialiste évoque plusieurs hypothèses, dont la fibromyalgie, et lui prescrit de nouveaux examens. Léa entrevoit alors une lueur d’espoir. «Aucune de ces hypothèses n’était réjouissante en soi mais j’étais prête à tout entendre, tant que j’avais un diagnostic. Le pire c’est de ne pas savoir, on se sent impuissant», souligne la jeune femme.

En 2011, après avoir éliminé toutes les autres maladies et confirmé l’existence de points douloureux spécifiques à la fibromyalgie, Léa obtient enfin le diagnostic qu’elle attendait tant. «Ça a été un soulagement moins grand que je ne l’espérais finalement car je savais que cela signifiait que je ne pourrais pas en guérir», se souvient Léa.

«Il faut apprendre à vivre avec l’omniprésence de la douleur»

Une fois qu’elle a compris qu’elle ne pourrait pas lutter contre cette maladie, Léa a décidé de l’accepter. «J’ai relativisé en me disant que ce n’était pas une maladie mortelle, que j’avais de la chance qu’elle ne soit pas très sévère chez moi car certaines personnes atteintes sont handicapées et ne peuvent plus travailler», explique la jeune femme. Aujourd’hui, elle a réalisé son rêve de devenir psychologue pour enfants. Elle se rend chez le kinésithérapeute une fois par semaine, prend un traitement symptomatique tous les jours et a appris à vivre «avec l’omniprésence de la douleur malgré des phases plus difficiles».

Léa espère que cette journée mondiale conduira la France à reconnaître cette maladie, comme l’a fait l’Organisation mondiale de la santé en 1992, afin que celle-ci soit mieux diagnostiquée et prise en charge. Des rassemblement ont eu lieu jeudi dans plusieurs grandes villes françaises tandis que la commission des affaires sociales de l’Assemblée nationale a, le 4 mai, autorisé à l’unanimité une enquête sur la fibromyalgie.

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