Si vous vivez avec une maladie chronique telle que la fibromyalgie, vous pourriez être trop familier avec les symptômes frustrants et indésirables qu’elle peut causer. Bien qu’il n’y ait aucune raison d’avoir honte des symptômes ou des effets secondaires que vous éprouvez, il peut être embarrassant quand le brouillard cérébral vous fait oublier ce que vous disiez au milieu d’une réunion de travail importante, ou une soudaine poussée de douleur vous rend tomber. plats que vous économisiez dans la cuisine.
Alors qu’il peut être difficile de parler des symptômes moins glamour que fibro peut produire, être honnête et ouvert sur les nombreuses façons dont il peut affecter quelqu’un est une étape importante vers la prise de conscience de cette condition complexe et souvent mal comprise. C’est pourquoi nous avons demandé à notre puissante communauté de partager certains des symptômes «embarrassants» de la fibromyalgie qu’ils ont vécus, des symptômes dont nous ne parlons pas souvent, mais qui méritent néanmoins d’être reconnus et compris.
Bien que les symptômes de fibro (ainsi que certains effets secondaires des médicaments) peuvent être totalement hors de votre contrôle, il peut être difficile de faire face aux effets physiques, émotionnels et cognitifs que fibro peut causer. Si vous avez des problèmes avec l’un des symptômes suivants, sachez que vous n’êtes pas seul.
C’est ce que notre communauté nous a dit:
1. Brouillard cérébral
“Le brouillard Fibro prend la paume”. Il n’y a rien de plus honteux pour moi que de parler à quelqu’un au téléphone, ou vraiment à n’importe qui en général, et d’utiliser constamment des mots remplis parce que j’ai du mal à trouver les mots que je dois transmettre pendant la conversation. J’utilise de nombreux post-it et je mets des rappels pour presque tout. “- Bee E.
” Ne pas être en mesure de traiter ce que quelqu’un vous dit et ensuite sembler impoli de demander ce qu’ils ont dit plus d’une fois parce que votre cerveau peut parler de charabia.” – Dani S.
” Définitivement le brouillard cérébral. C’est tellement honteux de perdre mon fil de pensée au milieu de la phrase et d’être incapable de maintenir une conversation intelligente, ou d’oublier complètement quelque chose que quelqu’un m’a dit. C’est affreux. “- Molly S.
2. Transpiration excessive
” Pour moi, je pense que c’est une transpiration excessive sans raison apparente. L’incapacité de réguler la température de votre propre corps est frustrante. “- Rachel P.
” Sueur! Le moins de mouvement et je suis surchauffé et la sueur dégouline sur mon visage. Je suis partout au travail et toujours brûlant. Il fait très froid dehors et les autres filles ont un chauffage supplémentaire à côté d’elles et ici je meurs avec un ventilateur! “- Christina K.
“En tant que femme de 27 ans [avec] fibromyalgie et endométriose, je souffre souvent de très mauvaises bouffées de chaleur. Il est embarrassant de commencer soudainement à attiser ou à enlever certains vêtements dans le but de soulager l’inconfort. “- Emily G.
3. Nécessité d’annuler les plans
” La partie la plus honteuse est d’avoir à annuler les plans parce que je ne me sens pas assez bien pour partir. Finalement, ils vous étiquetent comme «cette personne» “- Lauren H.
” C’est embarrassant pour moi d’avoir à annuler des plans sans trop de préavis. La douleur et / ou la fatigue sont plus que je ne peux supporter quelques jours et je dois annuler quelque chose que je voulais vraiment faire! “- Jan SP
4. Overdrive sensoriel
« Quand il y a trop de gens qui parlent en même temps ou qui font trop de bruit, ma tête est surchargée et je suis tellement agitée qu’elle peut exploser. C’est très difficile de cacher comment cela m’affecte. “- Annie T.
” Une chose que je ne peux plus faire est de regarder” Le prix est juste “. Il y a trop de bruit et de cris. Et j’arrive à l’endroit où je ne peux pas le voir comme je le faisais auparavant. “- Terri S.
5. Faible énergie
« Parfois, je n’ai pas assez d’énergie pour faire des choses simples comme prendre une douche ou préparer un dîner pour mes enfants ou même quelques jours. Je ne peux pas sortir du lit pour faire des choses avec mes enfants. “- Skye L.
“Le manque total d’énergie. Je comprends que c’est mon fibro. D’autres voient juste paresseux. “Michelle P.
” Fatigue. Quand il frappe, je dois m’asseoir immédiatement, peu importe où je suis. “- Lisa T.
6. Les fluctuations de poids
“Je suis fatigué de mon gain de poids. Je ne peux pas le secouer et j’ai honte quand je vois des gens qui me connaissaient auparavant. “Leah M.
7. Symptômes gastro-intestinaux
” Problèmes gastro-intestinaux. Je me sens toujours mal à l’aise de parler à mes médecins de mes symptômes gastro-intestinaux, qu’il s’agisse de nausées, de constipation ou de diarrhée. “- Mattie M.
” J’ai la diarrhée. Mes problèmes d’estomac interfèrent constamment avec ma vie. Au cours de Thanksgiving, j’ai dû m’asseoir et regarder tout le monde manger. J’étais trop terrifié pour me manger à cause de la diarrhée. Ça ne finit jamais. Parfois, je vais des jours sans manger à cause de cela. “- Melissa G.
” IBS [syndrome du côlon irritable] et toute la beauté qui va avec. Je dois éviter certains aliments juste parce que je suis devenu si sensible à eux. Non seulement pour les symptômes embarrassants qu’il apporte, mais aussi pour les crampes, les maux de tête et les flambées qui accompagnent la consommation de «mauvaise nourriture» »- Ashley A.
8. Douleur musculo-squelettique
« Douleurs au dos et aux jambes.» Je ne peux pas m’asseoir, me tenir debout ou marcher pendant plus de 30 minutes à la fois. Je bouge constamment si je suis debout ou si je dois me pencher sur quelque chose. Les gens pensent que vous êtes paresseux, mais mes jambes veulent littéralement abandonner! “- Meena N.
« J’aime être actif et visiter des endroits comme le zoo ou les parcs d’attractions avec des amis. Mais quand je suis dans un environnement où je marche beaucoup, c’est embarrassant de devoir faire des pauses à cause de mes genoux et de mes hanches. À 23 ans, les gens de mon âge peuvent être dérangés par mon besoin d’arrêter de fumer, et parfois ils me demandent des regards curieux de personnes plus âgées ou des commentaires comme «vous êtes trop jeune pour avoir ces douleurs». Habituellement, j’essaie de travailler aussi dur que possible, mais cela ne fait qu’aggraver la douleur quand je fais enfin une caverne et que je fais une pause. “Shelby C.
9. Eruptions / Beehives
” L’éruption rouge sur mon cou de l’air. À un moment donné, c’est seulement dans un endroit, parfois tout est fini. Quand vous êtes dans un endroit, les gens pensent parfois que j’ai un suçon. C’est un peu embarrassant. “- Krystina KF
10. Résoudre les problèmes
” Mon équilibre. Il a empiré et je suis tombé quand j’aurais pu me sauver; celui qui était à l’extérieur de la maison d’un ami sur son parterre de fleurs était le pire depuis qu’elle était surprise (je ne sais vraiment pas ce que j’ai). “- Lisa SECOND.
11. Sensibilité aux odeurs
” Ma pauvre intolérance à la chaleur, aux odeurs et à la fumée. Comme je suis convenablement habillé et anxieux pour un rassemblement social, alors le sentiment d’inconfort commence par une transpiration intense et des vertiges dus à la «chaleur» que mon corps perçoit. Ajoutez l’odeur ou la fumée d’une cuisine, soit à la maison ou dans un restaurant; le barbecue est mon ennemi juré. Je veux en profiter, mais mon corps refuse et les autres me voient comme un fêtard ou juste trop exigeant. “- Vee Vee Y.
12. J’ai froid
” Etre si froid. Tout le temps. Je vis au Texas. Pendant l’été, je porte des chandails et je dois toujours porter une veste partout où je vais. Il fait plus de 100 degrés, donc chaque endroit a le climatiseur et j’essaie de me réchauffer les mains assez pour sentir dedans “- Kristi R.
13. Contraction musculaire et spasmes
“Les spasmes. Des secousses presque constantes, dont certaines sont énormes et les gens vous regardent avec grâce, parce que vous ne pouvez pas contrôler votre propre corps. “- Rhian S.
” Mes pieds et mes jambes vont trembler ou se contracter. Je vais souvent crier ou hurler quand ça arrive parce que ça fait mal. Les gens me regardent et me rendent incroyablement timide. Je ne peux pas le contrôler. “- Elyse B.
” Des spasmes au dos qui me laissent incapable de marcher pendant que je suis au milieu d’un magasin. Je n’aime pas être le centre d’attention et rien ne me crie «regarde-moi» comme si tu ne pouvais pas bouger ». Megan M.
” J’ai des spasmes musculaires au hasard. Ça me fait perdre beaucoup de choses. “- Danika S.
14. Avoir les “reniflements”
” L’inhalation constante / toux / sécheresse de la bouche causée par mes médicaments. Vraiment inconfortable pour certains endroits et tousser et siroter. Quand ma soeur a eu son bébé, je la tenais et je sirotais, et certains pensaient qu’elle était malade et serrant un nouveau-né dans ses bras! Ne pas! Je suis désolé, seuls mes médicaments me font sonner comme ça! “- Garnet D.
15. Sensibilité au toucher
” Quand quelqu’un va me toucher, je recule toujours parce que je sais que ça va faire mal.” – Amanda P.
” Quand je dois le dire aux gens, s’il te plaît, ne me serre pas dans les bras ou ne dis pas au revoir parce que ça fait trop mal.” – Audrey M.
16. Faiblesse musculaire
” Perte d’adhérence et de mouvement dans ma main qui se traduit par de nombreux flacons tombés. Pendant que je fais les courses, je suis au milieu pleurant de frustration, ne me souciant pas si je ne peux pas ouvrir une canette ou une bouteille de boisson. “- Ann W.
” Quand je suis dans une éruption cutanée, mes muscles deviennent raides et faibles. Je commence à marcher bizarrement et il devient très difficile d’ouvrir les portes, de se pencher, etc. Les gens vont s’inquiéter beaucoup et demander ce qui se passe, ils m’ont juste vu et j’allais bien un jour ou une heure auparavant. C’est choquant pour eux et presque impossible à expliquer. Puis boom, un jour, une semaine. quoi que ce soit plus tard, je vais bien. “- Katrina R.
17. Difficulté à parler
” Ne pas pouvoir parler. J’ai oublié les mots, j’ai trébuché sur eux, j’ai dit des mots qui n’ont pas de sens. Ce qui est pire, c’est que je travaille avec les enfants et les parents me regardent parfois et je me sens tellement [stupide] ne pas être capable de transmettre mes pensées sans problèmes. Le simple fait d’écrire cela m’a pris 15 minutes parce que je devais revenir en arrière et réécrire des mots mal orthographiés ou qui n’avaient aucun sens. “- Marissa E.
” Je mélange des mots et ça sort très bizarre! Les gens me regardent bizarrement parce que ça leur semble [idiot] parfois. Le brouillard Fibro est le pire! Une fois, j’ai continué à dire des pommes de terre au lieu de beignets. Tellement embarrassant. “- Eloise T.
” Brouillard cérébral … quand je ne peux pas me souvenir des mots. Je pourrais regarder quelque chose et ne pas être capable de me rappeler comment ça s’appelle. C’est juste là sur le bout de ma langue, mais les mots ne viennent pas. “- Paula D.
18. Incontinence
” Incontinence! C’est super embarrassant, je dois porter des pantyiners tout le temps. Et juste comme ça n’est pas assez mauvais, j’ai des crampes vésicales aléatoires. Comme soudainement et de nulle part, mes crampes dans la vessie et je dois partir immédiatement. Cela a causé des accidents. “Morgan V.
” En fait, je peux uriner toutes les 15 minutes. Je pensais que c’était juste moi, je n’avais aucune idée que c’était à cause de fibro! Les voyages routiers sont ab ****! “- Shelby LS
19. Émotions intenses
« Avec la douleur, quand c’est vraiment mauvais, je me fâche, pour la douleur, pour moi et pour les autres. J’essaie d’avertir les gens avec qui je travaille sur une mauvaise journée de douleur, que si je pleure ou que j’irrite, ce n’est pas eux, c’est la douleur. “- Trish G.
20. Gaz
” Gas …” dijo nuff. “- Cindy J.
21. Réagir à la douleur soudaine
” Le symptôme le plus embarrassant est la douleur lancinante soudaine qui me fait automatiquement changer d’expression et arrêter de faire ce que je fais, que je sois au travail ou avec ma famille. Lorsque cela se produit, tout le monde remarque le changement soudain et demande ensuite ce qui se passe parce que j’ai toujours l’air «en forme» ou «en bonne santé». – Katherine L.
“Douleur de coups spontanés qui est parfois débilitante”. Je peux avoir une journée parfaite et une douleur aiguë vient de nulle part, me faisant frissonner ou même pleurer de douleur. “- DeAnna AC
” Quand mon corps se ferme soudainement, ou quand je ne peux pas descendre du canapé sans faire un grognement embarrassant. Je me demande souvent si les gens réalisent combien d’efforts il me faut pour faire ces choses. “Terri SA
22. Épuisement
” Épuisement. Je ne peux rien faire pendant trop longtemps ou je suis tellement fatigué que c’est douloureux pour moi de garder les yeux ouverts. J’ai dû réduire mes heures de travail et j’ai à peine réussi. J’ai besoin de faire une sieste pour passer la journée. “- Kirsten MR
” Epuisement et isolement. La fibromyalgie me cause une grande fatigue et, à mon tour, je suis confinée parce que je suis gênée de ne pas être capable de faire des choses comme rencontrer des amis et de la famille après avoir travaillé toute la journée.
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