23 Verdades As pessoas com fibromialgia querem que os outros as entendam

A fibromialgia é uma desordem de dor crônica que afeta aproximadamente 10 milhões de pessoas nos Estados Unidos, segundo a Associação Nacional de Fibromialgia. Ele é imprevisível e os sintomas variam, mas geralmente é caracterizada por dor crônica generalizada, fadiga, processamento anormal da dor, distúrbios do sono, fadiga, problemas com o funcionamento cognitivo, enxaquecas, ansiedade e depressão.

Os sintomas aparecem e desaparecem, e não há cura, mas especialistas descobriram uma série de tratamentos que podem ajudar a melhorar a funcionalidade. A fibromialgia é mais prevalente em mulheres, e pesquisas indicam que também pode haver um componente genético. Mas, apesar do grande número de pessoas que vivem com ela, a pessoa média sabe muito pouco sobre a fibromialgia.

O Mighty fez uma parceria com a Associação Nacional de Fibromialgia e perguntou à sua comunidade o que eles queriam que os outros entendessem sobre a doença. Isto é o que eles tinham a dizer:

1.  “Es real.” – Janie Fisher

 

2.  “Eu gostaria que pudéssemos usar um dispositivo de semáforo que permite que os outros saibam que dia estamos tendo.” – Linda Mortensen

3.  “Está sempre lá. Embora eu possa agir como “normal”, ainda dói “. – DeJarnett Sharon

4.  “É ‘s imprevisíveis, inexplicáveis e invisíveis , e na maioria dos casos não é causada” por algo que você fez “, como se pudesse ser evitado ou que é sua culpa. Você pode consumir todo ou pode ser habitável, apenas depende em dia, semana, mês ou ano. “- Kathy Johnson

5.  “Não é divertido ficar ’em casa’ em vez de ir trabalhar.” – Wendy Wilson

 

6.  “Você acha que eu estou fingindo estar doente, mas eu estou realmente fingindo estar bem.” – Becky Buice

7.  “O ‘nevoeiro’ … Eu me sinto frustrado comigo mesmo quando alguém questiona, menospreza ou critica … Me desculpe, eu perguntei a mesma coisa três vezes. Lembro-me de pensar sobre isso, mas não me lembro de perguntar isso “. – Sue Cook

8.  “As atividades diárias são completamente exaustivas” – Kae Romeril

9.  “Nós não somos viciados em drogas” – Tammy Bobb

 

10.  “As doenças crônicas não são de tamanho único para todos. O que funciona para o melhor amigo do seu primo pode não funcionar para mim. “- Patricia Bianca

 

11.  “Eu tenho que mudar meus planos no último minuto porque eu realmente não me sinto bem. Ou eu não faço planos porque as pessoas ficam chateadas quando eu tenho que cancelar. ” – Donna Holbrook

 

12.  “É uma condição crônica. Eu não vou me sentir melhor em breve. Eu estou lutando contra essa ‘doença invisível’ e estou perdendo muito tempo. “- Kristin Sciarappa

 

13.  “Não estamos inventando isso, e não é ‘tudo na cabeça'”. Lisa Hogan

14.  “Eu gostaria que todos os médicos tivessem mais educação e levassem a doença a sério.” – Donna Brown

 

15.  “Mude a cada dia! Um dia você pode se levantar e fazer coisas normais, trabalho doméstico, fazer compras, almoçar com um amigo, cuidar do jardim, cozinhar, e então a fada fibro lhe dá um tapa na cabeça. É tudo o que você pode fazer para chegar à sua cozinha e tomar seu remédio e café da manhã, tudo em seu corpo parece como se você corresse centenas de quilômetros, [há] dor ardente, latejante, até o seu cabelo dói ”. – Teresa Hawkins Wilson

 

16.  “Porque não é algo que nos mata, ninguém realmente se importa.” – Dezaray Smith

17.  “Obter um diagnóstico de fibromialgia não significa que sua vida acabou”. Demorei muito tempo, mas lutei e recuperei a vida a maior parte do tempo. ” Debra Jean Kelly Greene

18.  “Alguns dias estou muito cansado e tenho muita dor para fazer alguma coisa”. Pat Davis

19.  “Não somos preguiçosos; nós nunca sabemos o quanto é muita atividade. “- Cindi Halone

 

20.  “O fato de que ele parece saudável não significa que ele é” – Heather Lea Berg

21.  “A fadiga às vezes é paralisante e não podemos simplesmente transmiti-la.” – Tina Wegner

22.  “Não vai embora se eu for para a cama e fizer uma pausa!” – Joyce Mitchell

 

23.  “Somos pessoas reais e fortes, com uma dor real e incrível. Nós não pedimos para isso e é  não  uma desculpa para ser preguiçoso ou ficar em casa. Não importa quão bom parecemos, é uma batalha a cada segundo para viver uma vida ”. – Shannon Dawley

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