Mãe vivendo com doença crônica Fibromialgia diz que isso a deixa ‘não querendo mais ficar aqui’

Uma mãe que diz que sua doença crônica a deixa “sem querer mais existir” está aumentando a consciência de sua condição para dar aos outros uma melhor compreensão de como é a vida.

Clair Jones tem fibromialgia, uma doença incurável que causa dor crônica e desencadeia fadiga, rigidez muscular e perda de memória.

Sua causa exata é desconhecida – os sintomas de Clair começaram na adolescência, mas levaram décadas para serem diagnosticados.

É como uma dor ardente. Como alguém enfiando pokers quentes em você. A dor está a ponto de … você não quer mais existir – você realmente não quer mais estar aqui. Clair Jones

Clair Jones precisa usar muletas para se movimentar porque sua condição de fibromialgia lhe causa muita dor

A fibromialgia é uma condição que paralisa a dor, freqüentemente mal diagnosticada e amplamente mal compreendida.

Acredita-se que cerca de uma em cada 20 pessoas sofra disso.

É comumente considerada uma doença “invisível”, mas tem um impacto devastador na vida das pessoas.


O que é fibromialgia?

A fibromialgia é uma doença de longa duração que causa dor generalizada. Outros sintomas incluem fadiga; rigidez muscular; problemas com processos mentais (conhecidos como “fibro-nevoeiro”); intestino irritável e dores de cabeça.

Suas causas são desconhecidas, mas acredita-se que estejam relacionadas a mudanças químicas no cérebro e no sistema nervoso mais amplo, às vezes desencadeadas por um evento estressante. Alguns pacientes queixam-se de reações lentas ou céticas por parte dos profissionais de saúde, empregadores e funcionários de benefícios.

A dor da fibromialgia pode ser sentida como dor ou queimação, geralmente descrita como da cabeça aos pés.

Pode ser pior em alguns momentos do que em outros e pode mudar de local, geralmente sentido de forma mais severa nas partes do corpo mais utilizadas.

A fadiga varia desde a sensação de cansaço até a exaustão de uma doença semelhante à gripe e pode ir e vir com pessoas que descrevem uma sensação repentina de falta de energia.

Pessoas com casos leves a moderados geralmente podem levar uma vida normal, com o tratamento adequado

Mas se os sintomas forem graves, as pessoas podem não conseguir manter um emprego remunerado ou desfrutar muito da vida social.


A condição geralmente se desenvolve entre 30 e 50 anos, mas pode ocorrer em pessoas de qualquer idade.

E afeta sete vezes mais mulheres do que homens, mas não se sabe por quê.

Alfie, filho de Clair, tem Síndrome de Down e requer atenção constante. Quando a fibromialgia está no auge, sua filha CJ tem que intervir como cuidadora para os dois.

CJ diz: “Às vezes chega ao ponto em que ela não consegue sair do sofá ou há certos momentos em que ela está colocando a comida e suas mãos ficam rígidas a ponto de ela não conseguir movê-las sozinha, então ela apenas fica sentada e espera a dor passar. ”

Des Quinn, da Fibromyalgia Action UK, diz que pode ser um desafio provar a outras pessoas que você está sofrendo dessa doença.

É a dor que está com você todos os dias, mas é mais do que isso. Essa condição invisível tira as escolhas das pessoas, tira a liberdade das pessoas – elas estão presas em casa. É devastador, mas você também precisa provar ou validar para outras pessoas.

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