Pour ceux qui ne comprennent pas la fibromyalgie

«Si vous êtes né avec des gènes sains, vous me connaissez peut-être, mais vous ne me comprenez pas. Je n’étais pas aussi chanceux que toi. J’ai une prédisposition à souffrir de douleur chronique, de fatigue et de problèmes de concentration. La fibromyalgie a été diagnostiquée après des mois, des années, voire des décennies de problèmes physiques et émotionnels. Parce que vous ne saviez pas à quel point vous étiez malade, vous m’appeliez 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. ”

Lettre-ecriture-b_szo0433

– Ce que vous devez savoir sur la fibromyalgie:

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

La fibromyalgie peut être invalidante et dépressive, gênant les activités quotidiennes plus simples.

-Quelles choses que tu devrais savoir sur moi:

1. Ma   douleur – Ma douleur n’est pas ta douleur. Ce n’est pas causé par une inflammation. Prendre vos médicaments contre l’arthrite ne m’aidera pas. Je ne peux pas travailler car mon corps ne résiste pas. Ce n’est pas une douleur qui ne reste que dans une partie du corps. Aujourd’hui est sur mon épaule, mais demain, il se peut que ce soit sur un pied ou peut-être qu’il soit parti. Ma douleur est causée par les signaux qui arrivent mal dans mon cerveau, probablement à cause de troubles du sommeil. Ce n’est pas très compris, mais réel.

2. Ma fatigue –   Non seulement je me sens très fatigué. Je suis gravement épuisé. J’aimerais 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 des courses hier, mais que je ne peux m’empêcher de nettoyer le chantier 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 leurs capacités.

3. Mes problèmes de concentration –   Nous appelons ces problèmes «fibro-brouillard» tous ceux qui souffrent de fibromyalgie. Je ne me souviens peut-être pas de votre nom, mais je me souviens de votre visage. Vous ne vous souviendrez peut-être pas de ce que je vous avais promis de faire, même si vous ne m’en aviez pas parlé auparavant Mon problème n’a rien à voir avec l’âge, mais peut-être est-il lié aux troubles 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 ou que je vous poursuis 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 une 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 forts ou très faibles, les odeurs. La fibromyalgie a été appelée “le trouble qui aggrave tout”.

6. Mon intolérance –   Je ne supporte ni la chaleur ni l’humidité. Si je suis un homme, je vais transpirer abondamment. Si je suis une femme aussi. Et ne soyez pas surpris si je bouge 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, à la maison ou mourir. Une douleur intense est implacable et peut provoquer une dépression. Votre intérêt sincère et votre compréhension peuvent me sortir de l’abîme.

8. Mon stress –   Mon corps ne supporte pas bien le stress. Si je dois arrêter de travailler, travailler à temps partiel ou déléguer mes responsabilités à la maison, ce n’est pas parce que je suis paresseux. Le stress quotidien peut aggraver mes symptômes et me rendre complètement incapable.

9. Mon   poids – je peux être en surpoids ou être mince. Sois tel qu’il est, ça n’a pas été mon choix. Mon corps n’est pas ton corps. Mon appétit est affecté et personne ne sait comment le réparer.

10. Mon besoin de thérapie –   Si j’ai besoin d’un massage quotidien, ne m’envie pas. Mon massage n’est pas votre massage. Considérez ce qu’un massage dans mon corps peut faire si la douleur d’une jambe l’est 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 douleur chronique et de fatigue incurable. 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, des douleurs aux hanches, aux épaules ou aux genoux, mais je n’ai pas exactement les mêmes douleurs que quiconque. 
J’espère que cela vous aidera 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 atteintes 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 maladie comme faisant partie de nos vies.

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