Fibromyalgie : «On a l’impression d’avoir mal à l’intérieur des os»

Ce syndrome, dont c’est, ce mardi, la journée mondiale, se caractérise par des douleurs chroniques. Les malades considèrent que les traitements et prises en charge ne sont pas à la hauteur.

Blandine Bouedo avait coutume d’appeler ses douleurs ses «H21»«Les trois autres heures, c’était quand je dormais. Et je dormais parce que je tombais d’épuisement», raconte-t-elle. Cette infirmière en psychiatrie de 55 ans est atteinte de fibromyalgie. Un syndrome caractérisé par des douleurs chroniques diffuses dans tout le corps, une grande fatigue et des troubles du sommeil, dont c’est ce mardi la journée mondiale. Selon la Haute Autorité de santé (HAS), entre 1,4% et 2,2% des Français seraient fibromyalgiques, des femmes dans 80% à 90% des cas. «On a l’impression d’avoir mal à l’intérieur des os, comme si on recevait des décharges électriques», illustre Blandine.

Ses premières douleurs sont apparues à la fin des années 90, mais elle avoue n’y avoir pas prêté particulièrement attention. Elles ont commencé à être invalidantes en 2007, puis, au printemps 2012, «j’ai vécu dix-huit mois de descente aux enfers. Tout m’était douloureux, ça allait de la racine de mes cheveux à mes orteils. On ne pouvait plus me toucher, je ne pouvais plus marcher. J’étais épuisée, je me réveillais aussi fatiguée, voire plus, qu’en allant me coucher». Les antalgiques, avalés à haute dose, n’y font rien. Blandine vit avec des douleurs d’une intensité qu’elle évalue à 6 ou 7 sur 10. Non-stop. «La seule chose qu’on a en tête, ce sont les douleurs, la seule chose dont on peut parler, ce sont les douleurs.»

«Ça met le médecin devant son incapacité»

La perte de vie sociale est classique chez les fibromyalgiques. Parce qu’ils s’auto-excluent de nombre d’activités, sources de douleurs, et parce que l’entourage, parfois incrédule, s’épuise et s’éloigne. «Si on dit qu’on a la migraine ou mal aux dents, les gens comprennent. Mais des douleurs constantes, diffuses, qui ne laissent quasiment jamais aucun répit, ce n’est pas possible à imaginer, constate Carole Robert, présidente de l’association Fibromyalgie France. On a pensé pendant treize ans que j’avais une sclérose en plaques : pendant treize ans, j’ai éveillé la compassion. Quand on m’a posé le diagnostic de fibromyalgie, j’ai éveillé la suspicion. Les gens me disaient : “Tu es sûre que tu es bien malade ?”»

Ce même scepticisme existe chez des médecins, qui considèrent que la fibromyalgie est dans la tête. «Nous avons une formation tournée vers la rationalité. Or là, nous n’avons ni cause ni traitement, ça met le médecin devant son incapacité», souligne le rhumatologue Jean-Luc Renevier, très au fait du syndrome. Car la fibromyalgie reste en grande partie un mystère. Il existe «plein d’hypothèses» sur son origine, mais «aucune n’a fait preuve de sa réalité», constate le rhumatologue. Le plus déroutant étant qu’il n’existe aucune lésion ou inflammation permettant d’expliquer ces douleurs persistantes. Sur les radios, tout est normal. Ce qu’on sait, c’est que le cerveau des fibromyalgiques ne filtre pas suffisamment la douleur. La fibromyalgie est reconnue par l’Organisation mondiale de la santé depuis 1992, l’Académie nationale de médecine affirme qu’il s’agit d’un mal à prendre au sérieux et la HAS a publié un rapport d’orientation en 2010 qui a permis de la crédibiliser aux yeux d’un certain nombre de médecins.

L’infimière «m’a envoyée en hôpital psychiatrique en urgence»

Reste qu’outre le manque de connaissances, «il y a une réticence à prendre en charge [les malades] parce que c’est très chronophage», déplore le DRenevier. La réponse se fait ainsi souvent à coup de (nombreux) médicaments. Antalgiques, donc, mais aussi antidépresseurs. «On nous donne des médicaments, mais on ne nous écoute pas, dénonce Blandine Bouedo. A cause de tous ces traitements, j’avais le foie très abîmé, les médecins ont même parlé de m’en enlever un bout.» Les traitements destinés aux fibromyalgiques ne disposent pas d’autorisation de mise sur le marché en France (contrairement aux Etats-Unis, par exemple) et sont souvent prescrits pour dépression, ce qui n’aide pas les malades à accepter leur situation et à se sentir reconnus.

Les fibromyalgiques sont souvent réduits à leur syndrome : s’ils ont mal, s’ils ont un problème, ça ne peut être qu’à cause de la fibromyalgie. «Aux urgences, à partir du moment où on dit qu’on est “fibro”, ils ne s’occupent plus de nous, ils nous font une injection de morphine et nous laissent dans un coin», regrette Blandine Bouedo. Un comportement fréquent, qui peut se révéler dramatique. Carole Robert a ainsi dû se rendre aux urgences pour un trouble cardiaque et, «en 1 h 30, l’infirmière m’a convaincue que c’était psychique et m’a envoyée en hôpital psychiatrique en urgence. Tout le monde était d’accord pour dire que c’était ma tête». Ce trouble cardiaque prétendument imaginaire était en fait une fibrillation auriculaire. Quelques mois plus tard, Carole Robert faisait un AVC.

La fibromyalgie ne se guérit pas et une minorité de patients répond aux antalgiques. En revanche, les méthodes non médicamenteuses (relaxation, qi gong, balnéothérapie…) font de plus en plus leurs preuves. «On pense moins à la douleur, on a l’esprit qui se libère», explique Carole Robert. C’est justement grâce à cela que Blandine Bouedo parle de ses douleurs au passé. «Je suis toujours douloureuse, mais je ne suis plus en souffrance. Je ne suis plus au fond du trou avec des idées noires», salue-t-elle. Mise en invalidité à cause de son syndrome, elle a entamé une formation au qi gong, avec un objectif : créer une association destinée aux personnes souffrant de doulours chroniques. Elle qui dépensait entre 300 et 400 euros par mois en médicaments, ne débourse aujourd’hui plus que 38 euros pour ses séances d’acupuncture.

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