Pour ceux qui ne comprennent pas la fibromyalgie

«Si tu es né avec des gènes sains, tu me connais peut-être, mais tu ne me comprends pas. Je n’étais pas aussi chanceux que toi. J’ai une prédisposition à souffrir de douleurs chroniques, de fatigue et de problèmes de concentration. J’ai été diagnostiqué avec la fibromyalgie après des mois, des années ou peut-être des décennies de problèmes physiques et émotionnels. Parce que vous ne saviez pas à quel point vous étiez malade, vous m’avez appelé paresseux, prétendant être malade pour ne pas travailler, ou tout simplement ridicule. Si vous avez le temps de lire ceci, je veux vous aider à comprendre à quel point vous et moi sommes différents. “

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-Quelles sont les informations sur la fibromyalgie?

La fibromyalgie n’est pas une nouvelle maladie. En 1815, un chirurgien de l’Université d’Edimbourg, William Balfour, décrit la fibromyalgie. Au fil du temps, il a été décrit comme un rhumatisme chronique, une myalgie ou une fibrosite. Contrairement aux maladies, les syndromes tels que la fibromyalgie n’ont pas de cause connue, mais constituent un groupe de signes et de symptômes qui, malheureusement pour le patient, sont présents en même temps. La polyarthrite rhumatoïde et le lupus sont également des syndromes.

La plupart des symptômes et des problèmes émotionnels associés à la fibromyalgie ne sont pas d’origine psychologique.

Ce n’est pas un trouble dans lequel “tout est dans votre esprit”. En 1987, l’American Medical Association a reconnu la fibromyalgie comme une véritable condition physique et une cause majeure de handicap.

La fibromyalgie peut être invalidante et dépressive, interférant avec des activités quotidiennes plus simples.

-Que devriez-vous savoir de moi?

1. Ma   douleur – Ma douleur n’est pas ta douleur. Ce n’est pas causé par l’inflammation. Prendre vos médicaments contre l’arthrite ne m’aidera pas. Je ne peux pas travailler, parce que mon corps ne résiste pas. Ce n’est pas la douleur qui reste seulement dans une partie du corps. Aujourd’hui, c’est sur mon épaule, mais demain ça peut être sur un pied, ou peut-être c’est parti. Ma douleur est causée par les signaux qui arrivent à mon cerveau de façon incorrecte, peut-être en raison de troubles du sommeil. Ce n’est pas très compris, mais réel.

2. Ma fatigue –   Non seulement je me sens très fatigué. Je suis sévèrement épuisé. Je voudrais participer à des activités physiques, mais je ne peux pas. S’il vous plaît, ne le prenez pas personnellement. Si vous m’avez vu faire du shopping hier, mais je ne peux pas m’empêcher de nettoyer le jardin aujourd’hui, ce n’est pas parce que je ne veux pas le faire. Je paye le prix pour stresser mes muscles au-delà de leur capacité.

3. Mes problèmes de concentration –   Tout le monde souffre de fibromyalgie, nous appelons ces problèmes «fibro fog». Peut-être que je ne me souviens pas de ton nom, mais je me souviens de ton visage. Vous ne vous souvenez peut-être pas de ce que j’ai promis de faire pour vous, même si vous me l’avez dit quelques secondes auparavant. Mon problème n’a rien à voir avec l’âge, mais peut-être est-ce lié à la perturbation du sommeil. Je n’ai pas de mémoire sélective. Certains jours, même, je n’ai pas de mémoire à court terme.

4. Ma maladresse –   Si je  marche sur  vos pieds ousi jecours après vous dans la foule, je ne vous poursuis pas. Je n’ai pas le contrôle de mes muscles pour le faire. Si vous êtes derrière moi sur une échelle, soyez patient. Ces jours-ci, je prends la vie et chaque étape un à la fois.

5. Ma sensibilité –   Je ne peux pas rester ici! Cela peut être dû à certains facteurs, tels que la lumière vive, les bruits très élevés ou faibles, les odeurs. La fibromyalgie a été appelée “le trouble qui aggrave tout”.

6. Mon intolérance –   Je ne supporte pas la chaleur ou l’humidité. Si je suis un homme, je transpirerai abondamment. Si je suis une femme, aussi. Et ne soyez pas surpris si je me déplace sans contrôle quand il fait froid. Je ne tolère pas non plus le froid. Mon thermostat interne est cassé, et personne ne sait comment le réparer.

7. Ma dépression –   Oui, il y a des jours où je préfère rester au lit, ou à la maison, ou mourir. La douleur intense est implacable et peut causer la dépression. Votre intérêt sincère et votre compréhension peuvent me sortir de l’abîme.

8. Mon stress –   Mon corps ne peut pas gérer le stress bien. Si je dois cesser de travailler, travailler à mi-temps ou déléguer mes responsabilités à la maison, ce n’est pas parce que je suis fainéant. Le stress quotidien peut aggraver mes symptômes et me paralyser complètement.

9. Mon   poids, je peux être en surpoids ou je peux être mince. Soyez comme c’est, ce n’a pas été mon choix. Mon corps n’est pas ton corps. Mon appétit est affecté et il n’y a personne qui sait comment le réparer.

10. Mon besoin de thérapie –   Si j’ai besoin d’un massage quotidien, ne m’enviez pas. Mon massage n’est pas votre massage. Considérez ce qu’un massage dans mon corps peut faire si la douleur d’une jambe la semaine dernière, maintenant je le sens dans tout le corps. Le massage peut être très douloureux. mais j’en ai besoin. Masser régulièrement peut aider, au moins pendant un moment.

11. Mes bons jours –   Si vous me voyez sourire et fonctionner normalement, ne supposez pas que je me sens bien. Je souffre de douleurs chroniques et de fatigue qui ne guérissent pas. Je peux avoir mes bons jours, semaines ou même mois. En fait, ce sont de bons jours qui me permettent d’aller de l’avant.

12. Mon individualité-   Même ceux qui souffrent de fibromyalgie ne sont pas les mêmes. Cela signifie que je ne peux pas avoir tous les symptômes mentionnés. Je peux avoir une migraine, une douleur dans les hanches, les épaules ou les genoux, mais je n’ai pas exactement la même douleur que n’importe qui avec la condition.
J’espère que cela vous aide à me comprendre, mais si vous doutez encore de ma douleur, de votre librairie, de votre bibliothèque ou d’Internet, ils ont de bons livres et articles sur la fibromyalgie.

Note de l’auteur: Cette lettre est basée sur des conversations avec des femmes et des hommes atteints de fibromyalgie à travers le monde. Cela ne représente aucune des 10 millions de personnes souffrant de fibromyalgie dans le monde, mais cela peut aider les personnes en bonne santé à comprendre à quel point cette maladie peut être dévastatrice. S’il vous plaît, ne prenez pas la douleur de ces personnes à la légère. Vous ne voulez pas passer une journée à leur place ou dans leur corps. La fibromyalgie n’est pas quelque chose que nous choisissons d’avoir, mais si nous le faisons, nous devons atteindre un point où nous acceptons la condition dans le cadre de nos vies.

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