Quando você diz a alguém que você tem fibromialgia, você pode encontrar-se com um olhar confuso. “Como é isso?” Na verdade, é uma pergunta difícil de responder: não é fácil descrever como a fibromialgia sente alguém que nunca experimentou esse nível de dor ou os desafios que podem surgir.
Para ajudar as pessoas a ter uma idéia do que é a fibromialgia, pedimos a nossa comunidade poderosa que compartilhe como eles a descreveriam para alguém que não sentiu isso. Suas respostas colocam a realidade da fibromialgia em palavras que as pessoas saudáveis podem entender e simpatizar.
É o que a nossa comunidade nos disse:
1. “Imagine a pior doença, fadiga e dor e sua cabeça está em um nevoeiro profundo onde fez você pensar em ir ao hospital. Agora imagine que você se sente assim todos os dias e, sabendo que se você for ao hospital, provavelmente não encontrará nada ruim e eles vão te mandar para casa e dizer-lhe para ver o seu médico de família. Isso é fibromialgia. ”
2. “Imagine que você acorda de manhã sentindo exausto, como se você não tivesse dormido nos dias. Enquanto você mente na cama, tentando reunir a energia para levantar e ir ao banheiro, você enfrenta o pensamento: “Posso passar outro dia?” Então imagine que tudo o que você faz, mesmo as tarefas mais pequenas, parece que você está caminhando através de concreto molhado até sua cintura. ”
3. “Imagem de um telefone. Há algo de errado com o carregador. Não importa o quão difícil você tentar cobrar, você nunca cobra mais de 50%, se tiver sorte. Feche todos os aplicativos para tentar conservar a bateria, mas não ajuda. Ele reduz-se rapidamente a zero por cento em pouco tempo. Agora imagine que você foi atingido por um ônibus e você é o telefone. ”
4. “Eu digo às pessoas:” Você sabe como se sente quando tem gripe? Dores no corpo, todo dói mesmo o cabelo e as unhas? Sim, são meus bons dias. ”
5. “Pense na pior gripe que você experimentou, e junte-se a ele com a queda de três escadas, diretamente em uma colméia. Isso é fibromialgia. ”
6. “Para mim, a fibromialgia é um pensamento confuso e nebuloso, e em um mau dia de mudança, sinto que estou tentando atravessar a espessa geléia. Fazer coisas normais causa dor. Exaustão total sem o benefício de um sono reparador “.
7. ” É como se o seu corpo tivesse um acidente de carro enquanto você tivesse gripe e você nunca terminou de superar nenhum deles”.
8. “O pior sobre esta doença é que você não pode [imaginá-lo]. Há muitos sintomas que penso que as pessoas se perdem depois de listar o primeiro 10. Muitas vezes, é por isso que as pessoas com fibro se sentem tão isoladas e se voltam para a comunidade online para encontrar pessoas que entendem isso. ”
9. “Às vezes, quando eu tire minhas roupas e olho no espelho, eu espero ver magras em todo lugar porque meu corpo dói muito e dói muito. Então, há momentos em que eu gostaria de ter hematomas, porque então as pessoas poderiam levar minha dor a sério. ”
10. ” Imagine embrulhado em um burrito por um cobertor feito com aquelas cadeiras de massagem com as bolas neles. Exceto que você nunca sabe o quanto você vai pressionar você ou onde. Alguns dias é como se os músculos mais profundos do meu corpo fossem atingidos repetidamente, enquanto outros acham que minha pele está crua. Todo o tempo não consigo pensar com clareza, como se meu oxigênio estivesse vazando devido ao peso e à dor. “
11. “Meu corpo parece que foi atingido por um caminhão ou outros dias, alguém tem uma boneca vudu que fura os pinos e torce-os”.
12. “Dor extrema que faz você querer vomitar”. É difícil pensar, comer, dormir ou fazer coisas “normais”. Seus sensores estão apagados. Parece que o ruído soa em uma caverna, tudo se repete. Smell o incomoda. As luzes doem seus olhos e você fica tonto como um passeio de carnaval. ”
13. “É a síndrome da princesa e da ervilha … todas as sensações possíveis se intensificam. Estar em uma ponte ou perto de uma escada rolante sente um terremoto. Você cheira coisas que ninguém mais faz. E você não pode desconectar coisas como zumbido de luzes. ”
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15. “É como o dia depois de um exercício intenso, com músculos duros e doloridos. Adicione uma queimadura solar e uma dor de cabeça, depois a gripe além disso. A fadiga sente como se seu sangue se tornasse cimento nas veias. ”
16. “Às vezes eu tenho episódios sérios que sentem o que é quando você toca o tambor com sua língua quando alguém o desafiou quando era mais jovem. Você sente por uma hora constante ou então antes que os medicamentos contra a dor entrem “.
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