Qui souffre de fibromyalgie: “C’est comme avoir 20 cuillères à soupe d’énergie à utiliser chaque jour.”

L’artiste Anjie Mailey partage son expérience avec la maladie chronique mal comprise qui cause des douleurs à des millions de personnes.

La fibromyalgie est une maladie chronique à long terme qui cause des douleurs à des millions de personnes, mais qui est peu connue et peu documentée, déclare Jo Waters.

La décision de Kirsty Young de faire une pause dans les records de Desert Island l’été dernier en raison de sa lutte contre la fibromyalgie a placé la condition mal comprise au centre de l’attention.

Mais le présentateur de BBC Radio n’est pas le seul nom célèbre qui lutte à long terme contre cette maladie.

Lady Gaga est une autre victime de fibro de haut niveau. La chanteuse était tellement touchée qu’elle a dû annuler les 10 dernières dates d’un tour du monde l’année dernière.

Et l’acteur Morgan Freeman a également parlé de la façon de gérer la douleur de tout son corps.

Un rapport récent du Parlement estime que près de deux millions de Britanniques sont atteints de fibromyalgie, qui est plus susceptible de se produire entre 20 et 50 ans. Et les femmes sont sept fois plus susceptibles d’être touchées que les hommes.

Les symptômes comprennent une sensibilité accrue à la douleur, à la fatigue, à la raideur musculaire, à une difficulté à dormir, à des problèmes cognitifs et de mémoire, à des maux de tête et au syndrome du côlon irritable.

Kirsty Young a décidé de faire une pause dans les records de Desert Island l’été dernier en raison de sa lutte contre la fibromyalgie.

Il y a aussi des fourmillements, une sensation de brûlure dans la peau, des crampes dans les jambes, des jambes agitées, des picotements et une dépression. La douleur peut être ressentie n’importe où ou dans des zones spécifiques et cela peut changer.

“L’exercice m’a fait me sentir bien à nouveau”

Anjie Mailey, 49 ans, artiste et travailleuse spécialisée dans l’est de Londres, souffre de fibromyalgie depuis 15 ans:

Mes symptômes ont commencé par des douleurs inhabituelles; Si quelqu’un me touchait légèrement, j’avais l’impression de m’avoir frappé.

J’étais épuisé, comme si mes muscles n’avaient pas d’énergie et que mon cerveau ralentissait. J’oublierais des choses tout le temps. Plus tard, j’ai appris que cela s’appelait fibro-brouillard.

Il lui a fallu environ trois ans pour obtenir un diagnostic. Je suis allé chez le médecin de famille et j’ai passé des tests pour exclure des maladies telles que le lupus et la sclérose en plaques, mais tous étaient négatifs. Finalement, on m’a référé à un rhumatologue qui a diagnostiqué une fibromyalgie.

Mon avancée décisive est survenue quand on m’a recommandé de suivre un cours d’autogestion de la fibromyalgie au Great Ormond Street Hospital de Londres, où nous avons suivi une thérapie de groupe, des cours d’exercices légers et appris à gérer les symptômes.

L’exercice était vraiment la dernière chose que j’ai ressenti, étant donné que j’étais en surpoids, je n’étais pas en forme et avec tant de douleur que j’utilisais deux cannes, mais j’ai décidé de me rendre au gymnase.

Anjie Mailey (Image: Collection inconnue)

J’ai eu mal au début, mais j’ai pris des analgésiques et je suis parti. Ça faisait mal tout le lendemain, mais petit à petit j’ai augmenté ma force musculaire et ma résistance, et mes muscles me faisaient moins mal.

Bientôt, j’étais assez en forme pour faire du karaté et de la boxe féminine. J’ai aussi fréquenté un club minceur et j’ai perdu sept pierres.

Ils m’ont dit que vous avez 20 cuillères à soupe d’énergie à utiliser en une journée et que chaque activité vous en coûtera une.

Le défi consiste à planifier comment vous allez dépenser cette énergie. Ma douleur est toujours là, mais j’ai appris à la gérer et à prendre le contrôle maintenant.

Quelle en est la cause?

La condition est maintenant reconnue comme un dysfonctionnement du système de seuil de douleur. On pense qu’une faille se développe dans la façon dont les signaux de douleur sont traités, bien que le déclencheur ne soit pas encore clair.

Des études utilisant l’imagerie cérébrale ont mis en évidence un nombre croissant de preuves suggérant une implication du système nerveux central.

“Les patients deviennent trop sensibles aux stimuli externes et leur seuil de douleur diminue immédiatement. Le fait de les toucher légèrement peut donc être très douloureux”, explique le Dr Rod Hughes, rhumatologue spécialiste à l’Hôpital St. Peter’s. à Chertsey, Surrey.

“La fibromyalgie est souvent considérée comme le résultat d’un événement stressant, tel qu’une opération chirurgicale, un accident ou un traumatisme émotionnel important, tel qu’un divorce.

“Souvent, il y a eu un point critique de stress et les patients peuvent avoir des antécédents de migraines ou de symptômes semblables à ceux du SCI.”

Difficulté dans le diagnostic.

Comme de nombreux symptômes se chevauchent avec d’autres affections et qu’il n’existe aucun test de diagnostic définitif, il faut parfois plusieurs années, parfois, pour obtenir un diagnostic.

Hazel Borland de Fibromyalgia Action UK du Royaume-Uni, la plus grande organisation caritative de fibro au Royaume-Uni, affirme que si les patients peuvent consulter un médecin ou non, c’est en raison de leur code postal.

“De nombreux patients nous disent que leurs symptômes disparaissent ou qu’on leur dit qu’ils sont déprimés”, dit-elle.

“Bien que cela puisse être vrai, ils sont souvent déprimés à cause de leurs symptômes fibro.

“Les patients rapportent également avoir passé d’un pilier à l’autre entre médecins et spécialistes, et il n’existe qu’une poignée de cliniques spécialisées dans la fibrose.”

Elle ajoute: “L’impact de la fibromyalgie est sous-estimé. Si les gens ne se sentent pas soutenus, cela peut conduire à la dépression et à l’isolement, voire au suicide. “

Hazel recommande de demander un deuxième avis ou de demander une référence à un centre spécialisé dans la fibromyalgie …

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