9 CONSEILS POUR TOUT DIAGNOSTIC RÉCEMMENT DE FIBROMYALGIE

Vous avez reçu un diagnostic de fibromyalgie.

Je sais que vous vous sentez très mal pendant des mois, voire des années. Vous avez probablement changé de médecin pour essayer de comprendre pourquoi vous souffrez constamment et que vous pouvez à peine sortir du lit. Vous pouvez même vous sentir soulagé d’avoir enfin un diagnostic. Je sais que c’était quand j’ai été diagnostiqué en 2014.

Mais   quand je repense   à mon propre parcours de fibromyalgie, j’ai encore un rendez-vous:    j’aimerais savoir ce que je sais maintenant.  Donc, aujourd’hui, je suis d’accord avec ce que j’aurais aimé que quelqu’un me dise lorsqu’il m’a diagnostiqué pour la première fois. J’espère que la lutte d’un autre sera réduite.

Conseil n ° 1    N’acceptez pas aveuglément votre diagnostic

Mon premier conseil à toute personne nouvellement diagnostiquée avec la fibromyalgie est de remettre en question son diagnostic. Le fibro est un diagnostic d’exclusion. Cela signifie que le médecin doit exclure toute autre maladie possible. Es-tu sûr qu’il ou elle a fait ça?

Trop souvent, les médecins identifient une personne atteinte de fibromyalgie parce que c’est la voie de la moindre résistance. Il ne sait pas ce qui ne va pas chez lui et il n’y a rien d’évident dans son travail de laboratoire. Ce doit donc être la fibromyalgie, n’est-ce pas?

Cependant, je vous encourage à ne pas accepter aveuglément votre diagnostic. Voici pourquoi: Une étude canadienne a révélé que près des deux tiers des patients atteints de fibromyalgie étaient mal diagnostiqués.

Les conséquences sont énormes. Autrement dit, des millions de fibromyalgies souffrent d’affections non diagnostiquées, dont certaines sont probablement traitables!

(“The Fibro Fix” du Dr. David Brady est un excellent livre qui traite du diagnostic excessif de la fibromyalgie, identifiant d’autres affections simulant la fibromyalgie et permettant de savoir s’il est réellement fibro).

Conseil n ° 2 Trouver un bon médecin

Je sais que certaines personnes vivent dans des zones où les options médicales sont limitées, mais si vous ne faites pas partie de cette catégorie, n’allez pas chez un médecin qui ne vous respecte pas ou ne peut pas vous aider.

Au fil des ans, j’ai entendu tellement d’histoires d’horreur de médecins et de collègues qui m’ont dit qu’il n’y avait pas de fibromyalgie. Qui leur a dit qu’ils vieillissaient ou perdaient du poids?

Si votre médecin a dit ou fait l’une des choses ci-dessus, cherchez-en un nouveau (si possible). Ne pas être abusé! Ne laissez pas votre médecin annuler votre maladie!

Vous ne pouvez pas le faire, et tout n’est pas dans votre tête. Ne doutez jamais de ça! Trouvez un médecin qui croit en la fibromyalgie, qui comprend la complexité de la maladie et qui est au courant des dernières découvertes.

Je vous préviens: il est difficile de trouver un bon médecin pour la fibro. Attendez-vous à passer d’un médecin à l’autre avant de trouver celui qui vous convient, mais croyez-moi, l’effort du médecin en vaut la peine!

Conseil n ° 3 Le “bon médecin” n’est probablement pas un médecin de famille ou un rhumatologue

Le rapport 2016 sur la rémunération dans Medscape a révélé que les médecins exigent en moyenne environ 15 minutes par visite. C’est juste assez long pour que le patient se débarrasse de ses symptômes et le médecin doit rédiger une ordonnance pour remédier à la maladie. Cela fonctionne si vous avez quelque chose d’aussi simple que la grippe, mais si vous souffrez d’une maladie chronique compliquée telle que la fibromyalgie, cela ne la coupera pas.

Alors, quelle est la solution? Trouvez des professionnels de la santé qui travaillent différemment dans le domaine de la santé. Pendant des années, j’ai côtoyé plusieurs médecins de famille et spécialistes. Aucun de ces médecins n’a gardé les réponses pour m’aider à me sentir mieux à propos de Fibro. Vous savez pourquoi Parce qu’ils ont tous examiné  une  partie de mes problèmes de santé.

El único éxito que tuve en la reducción de mis síntomas fue trabajar con médicos que practican la medicina funcional. Los médicos de medicina funcional buscan un enfoque más sistemático de todo el cuerpo en la atención de la salud. Entienden que los síntomas no ocurren en el vacío. Nuestros dolores crónicos, indigestión, migrañas, fatiga y la variedad de otros síntomas relacionados con el fibro que experimentamos están todos interconectados y deben tratarse como tales.

En médecine fonctionnelle, l’objectif est de rétablir l’état de santé général et non de traiter les symptômes avec les derniers médicaments. Les professionnels de la médecine fonctionnelle ont tendance à utiliser beaucoup plus d’outils que les médecins traditionnels, tels que les changements de mode de vie, les compléments alimentaires naturels et les thérapies alternatives. Si on me diagnostiquait aujourd’hui, je me rendrais directement sur le site Web de l’Institute of Functional Medicine pour tenter de trouver un médecin de la médecine fonctionnelle local connaissant bien la fibromyalgie.

Je connais d’autres fibropathes qui ont bien fonctionné pour les professionnels de la santé, les médecins ostéopathes et même les chiropraticiens. Ces types de prestataires médicaux ont tendance à être plus ouverts d’esprit. Ceci est important car il n’existe pas de pilule magique pour la fibromyalgie (voir le conseil n ° 4) et vous avez besoin d’un médecin qui n’a pas peur de faire des expériences avec de nouveaux traitements (voir le conseil n ° 8).

Je ne suggère pas que tous les médecins traditionnels sont incompétents et esclaves de l’industrie pharmaceutique, mais je dis qu’il est plus probable que leurs résultats s’améliorent en travaillant avec un médecin qui suit une approche de traitement globale et holistique.

Astuce # 4 Il n’y a pas de pilule magique.

L’année suivant le diagnostic, j’ai essayé certaines des fibromédicines habituelles, mais aucune ne m’a aidée. Soit ils ne travaillaient pas, soit ils me faisaient un zombie.

Lorsque j’ai examiné de près les résultats des études sur les trois médicaments approuvés par la Food and Drug Administration des États-Unis. UU Pour la fibromyalgie (Cymbalta, Lyrica et Savella), on a vite compris pourquoi ils ne fonctionnaient pas pour moi. La vérité est qu’ils ne fonctionnent pas très bien pour la   plupart des  fibro-patients. Par exemple, environ un tiers seulement des patients prenant Cymbalta rapportent au moins 50% de réduction de la douleur, et c’est le médicament le plus efficace des trois!

Ces médicaments       n’aident    une    fibromyalgie – patient et décourager quiconque d’essayer, mais pour la plupart d’ entre nous il n’y a pas de pilule magique.

Astuce # 5 Il faudra plus que des médicaments pour se sentir mieux

Dans le cadre de mes recherches, je rencontre parfois des histoires de réussite impliquant des personnes qui ont complètement récupéré de la fibromyalgie ou qui ont réussi à réduire leurs symptômes. En lisant leurs histoires, j’ai découvert un schéma: chacun d’eux utilisait plusieurs modalités pour se sentir mieux.

Les changements nutritionnels sont presque toujours mentionnés. Ils ont abandonné le sucre et les aliments transformés et ont reçu un régime complet. Beaucoup d’entre eux étaient sans produits laitiers, sans soja et sans gluten.

Ils ont fondamentalement revu leur mode de vie. Ils méditent ou pratiquent le yoga ou le tai-chi pour calmer leur système nerveux hyperactif. Ils font des promenades douces ou des exercices aquatiques pour rester actifs. Ils passent régulièrement du temps à l’extérieur. Ils apprennent à se déplacer. Ils sont devenus des experts en gestion du stress.

Parfois, ils utilisaient des médicaments sur ordonnance, mais ce n’était qu’une petite partie de leur plan de traitement général. En bref, ils ont choisi une approche de traitement plus naturelle et basée sur le mode de vie.

(Si vous êtes intéressé par un traitement plus complet, je vous recommande de lire le “Manuel fibro-manuel” du Dr Ginevra Liptan). C’est l’un des meilleurs livres sur la fibromyalgie que j’ai lu, car il contient des informations sur les traitements des matériaux traditionnels avec des thérapies alternatives et des recommandations en matière de style de vie. Le Dr Liptan acquiert réellement la   fibromyalgie parce qu’elle est elle-même un fibro-guerrier!

Astuce # 6 Enquêter par vous-même

Nous savons tous que les médecins sont très occupés et que la plupart d’entre eux n’ont pas le temps de suivre les dernières recherches et traitements, dans toutes les conditions auxquelles ils sont exposés un jour donné. Alors ne comptez pas uniquement sur eux pour votre guérison!

Voici la dure réalité: dès que vous quittez la salle d’examen, vous devenez le prochain patient. Ils ne penseront probablement pas à vous avant d’avoir vu votre visage au prochain rendez-vous.

C’est donc à    vous de    devenir votre meilleur défenseur de la santé. Allez sur Internet et faites vos propres recherches! Renseignez-vous sur les nouveaux traitements ou thérapies et apportez-les à votre prochain rendez-vous avec le médecin pour discussion. (Avertissement: certains médecins peuvent ne pas répondre positivement aux suggestions de traitement, et si cela se produit, cela peut indiquer que vous ne travaillez peut-être pas avec le médecin approprié). Un médecin efficace et attentionné sera ouvert pour parler de divers traitements.

Soyez proactif dans le traitement de vos symptômes en apportant les principaux changements de mode de vie mentionnés dans le tableau 5.

Devenez un expert pour votre maladie chronique! J’ai appris très tôt que je ne me sentirais jamais mieux si je ne dépendais que de mes médecins. Vous n’avez tout simplement pas le temps ou la capacité d’attention pour cela.

Astuce 7 Connectez-vous avec d’autres personnes atteintes de fibromyalgie

Fibro peut être une condition solitaire et misérable. Les amis et les membres de la famille souffrent peut-être de leur douleur, mais la vérité est que personne ne reçoit réellement la fibromyalgie tant qu’il ne l’a pas.

Mais il y a un groupe de personnes qui comprendront toujours leur souffrance: leurs camarades combattants! Essayez de communiquer avec d’autres personnes atteintes de fibromyalgie par le biais de groupes de soutien locaux ou en ligne. (Il y a des centaines de groupes de soutien sur la fibromyalgie sur Facebook!)

Vous apprendrez beaucoup de vos compagnons guerriers! Beaucoup d’entre eux sont dans les tranchées depuis des décennies avec la fibromyalgie et ils savent mieux que quiconque ce qui élimine la douleur ou comment éliminer une avalanche de symptômes. Ils comprennent également toutes les choses émotionnelles qui accompagnent une maladie chronique, imprévisible et vitale.

Conseil supplémentaire: les groupes de soutien locaux sont une bonne source pour trouver le meilleur spécialiste de la fibre de votre communauté.

Conseil n ° 8 Découvrez les traitements émergents.

Au début de mon diagnostic, il était beaucoup plus strict de ne travailler que sur des traitements de recherche éprouvés. Cependant, j’ai vite compris que la recherche sur la fibromyalgie en était encore à ses balbutiements et qu’il n’existait aucune approche thérapeutique unique. L’un des grands mystères de la fibro est que ce qui fonctionne pour l’un d’entre nous ne fonctionne pas nécessairement pour le reste d’entre nous.

C’est pourquoi je suis devenu beaucoup plus ouvert sur le traitement. D’une certaine manière, je suis devenu mon propre cobaye. Je n’ai pas peur d’essayer de nouveaux traitements, bien sûr, après des recherches approfondies et une conversation avec mon médecin! Certains des outils les plus efficaces de mon arsenal actuel pour le contrôle de la fibrose sont considérés comme un traitement complémentaire, mais ils fonctionnent pour moi et c’est ce qui compte.

J’apprends beaucoup de mes autres guerriers fibro (voir le conseil n ° 7). Ils constituent une ressource inestimable et sont souvent très en avance sur les chercheurs en matière de traitements naturels ou alternatifs.

Astuce # 9 Dans quelle mesure gérez-vous la fibromyalgie dépend de vous?

Il y a quelques jours, un membre d’un groupe de soutien en ligne pour fibro a déclaré que la douleur était sa petite amie. Peut-être que je ne suis pas encore mûr mentalement, parce que je ne veux pas devenir ami avec ma douleur.

Mais je vois la douleur chronique comme un grand enseignant. Après votre diagnostic, vous en apprendrez beaucoup sur vous-même, vos proches et la communauté médicale. Votre force est mise à l’épreuve, parfois quotidiennement, et c’est à vous de décider si vous devez gérer cette bataille avec grâce ou désespoir.

La fibromyalgie vous changera en tant que personne. Cela dépend de vous, que ce soit pour le meilleur ou pour le pire, mais vous avez toujours le choix. Souviens-toi de ça.

Maintenant, à vous de jouer: quel conseil donneriez-vous à une personne ayant reçu un diagnostic de fibromyalgie? 

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  64. When I initially commented I appear to have clicked on the -Notify me when new comments are added- checkbox and now whenever a comment is added I get 4 emails with the exact same comment. There has to be a means you are able to remove me from that service? Cheers.

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  77. I do agree with all the ideas you’ve presented in your post. They’re very convincing and will certainly work. Still, the posts are very short for starters. Could you please extend them a bit from next time? Thanks for the post.

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  84. Definitely imagine that that you stated. Your favorite reason seemed to be on the net the simplest factor to consider of. I say to you, I certainly get annoyed whilst other people think about worries that they plainly do not understand about. You managed to hit the nail upon the top as well as outlined out the whole thing with no need side-effects , other folks can take a signal. Will likely be back to get more. Thank you

  85. It is appropriate time to make some plans for the future and it’s time to be happy. I have read this post and if I could I wish to suggest you few interesting things or tips. Perhaps you can write next articles referring to this article. I want to read more things about it!

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  87. Hi there! I just wanted to ask if you ever have any problems with hackers? My last blog (wordpress) was hacked and I ended up losing months of hard work due to no data backup. Do you have any solutions to prevent hackers?

  88. Definitely imagine that which you said. Your favourite justification appeared to be at the web the easiest factor to consider of. I say to you, I certainly get annoyed whilst other people consider concerns that they just do not understand about. You controlled to hit the nail upon the highest as neatly as defined out the entire thing with no need side effect , other people could take a signal. Will probably be again to get more. Thank you

  89. naturally like your website but you need to check the spelling on quite a few of your posts. A number of them are rife with spelling issues and I find it very troublesome to tell the truth nevertheless I’ll certainly come back again.

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  93. Hello! I know this is kinda off topic however , I’d figured I’d ask. Would you be interested in exchanging links or maybe guest writing a blog post or vice-versa? My site covers a lot of the same topics as yours and I feel we could greatly benefit from each other. If you’re interested feel free to shoot me an email. I look forward to hearing from you! Awesome blog by the way!

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  96. You actually make it appear really easy along with your presentation however I in finding this matter to be really one thing which I believe I might never understand. It sort of feels too complex and very broad for me. I’m having a look forward for your subsequent submit, I will try to get the hold of it!

  97. When I initially left a comment I seem to have clicked the -Notify me when new comments are added- checkbox and from now on whenever a comment is added I receive 4 emails with the same comment. There has to be an easy method you can remove me from that service? Thanks a lot.

  98. Next time I read a blog, Hopefully it doesn’t disappoint me as much as this particular one. After all, Yes, it was my choice to read through, nonetheless I actually believed you would probably have something helpful to say. All I hear is a bunch of complaining about something you could fix if you were not too busy looking for attention.

  99. The root of your writing whilst appearing reasonable originally, did not really sit properly with me personally after some time. Somewhere within the sentences you were able to make me a believer but just for a while. I still have got a problem with your jumps in logic and you might do nicely to help fill in those breaks. In the event you actually can accomplish that, I will certainly end up being amazed.

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  105. An impressive share! I have just forwarded this onto a colleague who had been doing a little research on this. And he actually bought me breakfast due to the fact that I discovered it for him… lol. So let me reword this…. Thank YOU for the meal!! But yeah, thanks for spending time to discuss this subject here on your site.

  106. Unquestionably believe that which you stated. Your favorite reason appeared to be at the net the simplest factor to take into accout of. I say to you, I definitely get irked while people think about worries that they plainly do not recognise about. You controlled to hit the nail upon the top as well as outlined out the entire thing with no need side-effects , people could take a signal. Will probably be back to get more. Thank you

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  108. Definitely consider that which you said. Your favorite justification seemed to be at the net the easiest factor to take note of. I say to you, I definitely get irked whilst folks consider worries that they plainly do not understand about. You controlled to hit the nail upon the highest as smartly as defined out the whole thing without having side-effects , other people can take a signal. Will likely be again to get more. Thanks

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  114. Hmm it seems like your blog ate my first comment (it was super long) so I guess I’ll just sum it up what I submitted and say, I’m thoroughly enjoying your blog. I too am an aspiring blog blogger but I’m still new to the whole thing. Do you have any suggestions for rookie blog writers? I’d genuinely appreciate it.

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  124. Today, I went to the beachfront with my children. I found a sea shell and gave it to my 4 year old daughter and said “You can hear the ocean if you put this to your ear.” She placed the shell to her ear and screamed. There was a hermit crab inside and it pinched her ear. She never wants to go back! LoL I know this is entirely off topic but I had to tell someone!

  125. Hey there! This post could not be written any better! Reading this post reminds me of my previous room mate! He always kept chatting about this. I will forward this write-up to him. Pretty sure he will have a good read. Thanks for sharing!

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