22 ‘sintomas vergonhosos’ da fibromialgia que nós não falamos sobre

Se você vive com uma doença crônica, como fibromialgia, você pode estar muito familiarizado com os sintomas frustrantes e indesejáveis ​​que pode causar. Embora não haja motivo para ter vergonha de quaisquer sintomas ou efeitos colaterais que você tenha, ainda pode ser embaraçoso quando a névoa do cérebro faz você esquecer o que estava dizendo no meio de uma importante reunião de trabalho, ou uma súbita explosão de dor faz você cair. Pratos que você estava guardando na cozinha.

Embora possa ser difícil falar sobre os sintomas menos glamourosos que o fibro pode produzir, ser honesto e aberto sobre as muitas maneiras pelas quais pode afetar alguém é um passo importante para se tornar consciente dessa condição complexa e muitas vezes incompreendida. É por isso que pedimos à nossa poderosa comunidade que compartilhe alguns dos sintomas “embaraçosos” da fibromialgia que eles experimentaram, sintomas com os quais não podemos falar com frequência, mas que, no entanto, merecem reconhecimento e compreensão.

Embora os sintomas da fibro (bem como alguns efeitos colaterais da medicação) possam estar totalmente fora de seu controle, pode ser um desafio lidar com os efeitos físicos, emocionais e cognitivos que a fibro pode causar. Se você tiver problemas com qualquer um dos sintomas a seguir, saiba que não está sozinho.

Isto é o que nossa comunidade nos disse:

1. Névoa do cérebro

“O  nevoeiro Fibro pega a palma da mão”. Não há nada mais vergonhoso para mim do que falar com alguém no telefone, ou mesmo com alguém em geral, e constantemente usar palavras de preenchimento porque tenho dificuldade em encontrar as palavras que preciso transmitir durante a conversa. Eu uso muitos post-its e defino lembretes para quase tudo. “- Bee E.

”  Não ser capaz de processar o que alguém está dizendo e, em seguida, parece indelicado perguntar o que eles disseram mais de uma vez, porque seu cérebro pode estar falando bobagens.” – Dani S.

”  Definitivamente névoa do cérebro. É tão vergonhoso perder minha linha de pensamento no meio da frase e ser incapaz de manter uma conversa inteligente, ou esquecer completamente algo que alguém me disse. É horrível. “- Molly S.

2. sudorese excessiva

”  Para mim, eu acho que é a transpiração excessiva, sem motivo aparente. A incapacidade de regular a temperatura do seu próprio corpo é frustrante. ”- Rachel P.

”  Suar!  A menor quantidade de movimento e estou superaquecido e o suor escorrendo pelo meu rosto. Eu estou em todo lugar no trabalho e sempre em chamas. Está muito frio lá fora e as outras garotas têm um aquecedor extra ao lado delas e aqui estou morrendo com um ventilador! “- Christina K.

“Como uma mulher de 27 anos [com] fibromialgia e endometriose, muitas vezes sofro de ondas de calor realmente ruins. É embaraçoso começar de repente a abanar ou tirar certas roupas, na tentativa de aliviar o desconforto. “- Emily G.

3. Necessidade de cancelar planos

“  A parte mais vergonhosa é ter que cancelar os planos porque não me sinto bem o suficiente para sair. Eventualmente eles o rotulam como ‘essa pessoa’ ”- Lauren H.

”  É embaraçoso para mim ter de cancelar planos sem muito aviso. A dor e / ou fadiga são mais do que eu posso suportar alguns dias e tenho que cancelar algo que eu realmente queria fazer! “- Jan SP

4. Overdrive sensorial

”  Quando há muitas pessoas falando ao mesmo tempo ou muito barulho, minha cabeça vai para uma sobrecarga e eu fico tão excitado que poderia explodir. É muito difícil esconder como isso me afeta. ”- Annie T.

“  Uma coisa que eu não posso mais fazer é olhar ‘O preço está certo’. Há muito barulho e gritos. E eu estou chegando onde eu não posso ver como eu costumava. ”- Terri S.

5. baixa energia

”  Às vezes eu não tenho energia suficiente para fazer coisas simples como tomar banho ou preparar o jantar para os meus filhos ou mesmo alguns dias. Eu não posso sair da cama para fazer coisas com meus filhos. ”- Skye L.

“A falta completa de energia. Eu entendo que é minha fibro. Outros apenas vêem preguiçoso. Michelle P.

”  Fadiga. Quando isso acontece, tenho que me sentar imediatamente, independentemente de onde estou. ”- Lisa T.

 

6. Flutuações de peso

“Estou cansado do meu ganho de peso. Eu não posso me livrar disso e tenho vergonha quando vejo pessoas que me conheciam antes. Leah M.

7. sintomas gastrointestinais

”  Problemas gastrointestinais. Eu sempre me sinto desconfortável dizendo aos meus médicos sobre meus sintomas gastrointestinais, se náusea, constipação ou diarréia. “- Mattie M.

”  Eu tenho diarreia. Meus problemas de estômago interferem constantemente em minha vida. Este passado Thanksgiving eu tive que sentar e assistir todo mundo comer. Eu estava com muito medo de me comer devido à diarréia. Nunca acaba. Às vezes eu vou dias sem comer por causa disso. “- Melissa G.

”  IBS [síndrome do intestino irritável] e toda a beleza   que vai   com ele. Eu tenho que evitar certos alimentos só porque me tornei tão sensível a eles. Não só pelos sintomas embaraçosos que traz, mas também por cãibras, dores de cabeça e surtos que acompanham a ingestão de ‘comida ruim’ ”- Ashley A.

8. Dor musculoesquelética

“  Dor nas costas e nas pernas.” Não consigo sentar, ficar em pé ou andar por mais de 30 minutos de cada vez. Estou constantemente me movendo, se estou de pé ou tenho que me inclinar sobre alguma coisa. As pessoas pensam que você é preguiçoso, mas minhas pernas literalmente querem desistir! “- Meena N.

”  Eu amo estar ativo e visitar lugares como o jardim zoológico ou os parques de diversão com os amigos. Mas quando eu estou em um ambiente onde eu ando muito, é constrangedor ter que fazer pausas por causa dos meus joelhos e quadris. Aos 23 anos, as pessoas da minha idade podem ficar incomodadas com a minha necessidade de parar de fumar, e às vezes me fazem olhar inquisitivo de pessoas mais velhas ou comentários como “você é jovem demais para ter essas dores”. Normalmente, tento trabalhar o máximo possível, mas isso só piora a dor quando finalmente faço uma caverna e faço uma pausa. “Shelby C.

9. Erupções / Colmeias

”  A erupção vermelha no meu pescoço do ar. Em algum momento é só em um lugar, às vezes tudo acabou. Quando você está em um lugar, as pessoas às vezes pensam que eu tenho um chupão. É um pouco embaraçoso. “- Krystina KF

10. problemas de equilíbrio

”  Meu equilíbrio. Ele piorou e eu caí quando deveria ter conseguido me salvar; a que estava do lado de fora da casa de um amigo em seu canteiro de flores era a pior desde que ela ficou surpresa (eu realmente não sei o que tenho). “- Lisa SEGUNDA.

11. Sensibilidade aos odores

”  Meu pobre intolerância ao calor, odores e fumaça. Como estou adequadamente vestida e ansiosa para uma reunião social, a sensação de desconforto começa com suor e tontura intensas devido ao “calor” que meu corpo está percebendo. Adicione o cheiro ou a fumaça de uma cozinha, seja em casa ou em um restaurante; o churrasco é meu inimigo. Eu quero aproveitar, mas meu corpo se recusa e outros me veem como uma festeira ou muito exigente. ”- Vee Vee Y.

12. Sentindo frio

”  Sendo tão frio. O tempo todo. Eu moro no Texas. Durante o verão, eu uso blusas e sempre uso uma jaqueta onde quer que eu vá. É mais de 100 graus, então cada lugar tem o AC configurado e eu estou tentando aquecer as mãos o suficiente para sentir neles “- Kristi R.

13. Contração muscular e espasmos

”  Espasmos. Twitches quase constantes, alguns dos quais são   enormes   e as pessoas olham para você com graça, porque você não pode controlar seu próprio corpo. “- Rhian S.

”  Meus pés e pernas vai abalar ou contrato. Eu freqüentemente grito ou uivo quando acontece porque dói. As pessoas olham e me deixam incrivelmente constrangida. Eu não posso controlar isso. “- Elyse B.

”  Espasmos nas costas aleatórios que me deixam incapaz de andar, enquanto eu estou no meio de uma loja. Eu não gosto de ser o centro das atenções e nada grita comigo “olhe para mim” como se você não pudesse se mover “. Megan M.

”  Eu tenho espasmos musculares de forma aleatória. Isso me faz perder muito as coisas. ”- Danika S.

14. Tenha o “Sniffles”

”  A constante inalação / tosse / boca seca causada pelos meus medicamentos. Realmente desconfortável para certos lugares e tossindo e bebendo. Quando minha irmã teve seu bebê, eu estava segurando-a e bebendo, e alguns achavam que ela estava doente e abraçando um bebê recém-nascido! Não! Me desculpe, só meus remédios me fazem soar assim! “- Garnet D.

15. Sensibilidade ao toque

“  Quando alguém vai me tocar, eu sempre recuo porque sei que vai doer.” – Amanda P.

”  Quando tenho que dizer às pessoas, por favor, não me abrace ou diga adeus porque isso dói demais.” – Audrey M.

16. Fraqueza muscular

”  A perda de aderência e movimento na minha mão que resulta em numerosos caiu frascos. Enquanto estou fazendo compras, fico no meio chorando de frustração, sem me importar se não consigo abrir uma lata ou uma garrafa de bebida. ”- Ann W.

”  Quando eu estou em uma erupção cutânea, meus músculos se tornam rígidos e fraco. Eu começo a andar estranho e torna-se muito difícil abrir portas, abaixar-se, etc. As pessoas vão se preocupar muito e perguntar o que acontece, eles só me viram e eu estava bem um dia ou uma hora atrás. É chocante para eles e quase impossível de explicar. Então boom, um dia, uma semana. seja o que for depois, parece-me bem. “- Katrina R.

17. Dificuldade em falar

”  Não ser capaz de falar. Esqueci as palavras, tropecei nelas, falei palavras que não fazem sentido. O pior é que eu trabalho com crianças e pais apenas olhe para mim às vezes e me sinto tão [burro] não sendo capaz de transmitir meus pensamentos sem problemas. Simplesmente escrever isso me levou 15 minutos porque eu tinha que voltar e reescrever as palavras que estavam incorretas ou não faziam sentido. ”- Marissa E.

”  Eu misturo palavras e ele sai muito estranho! As pessoas me olham estranho porque às vezes parece tão tolo. O nevoeiro fibro é o pior! Uma vez eu continuei dizendo batatas em vez de donuts. Tão constrangedor. “- Eloise T.

”  Cérebro nevoeiro … quando eu não consigo me lembrar as palavras. Eu poderia estar olhando para algo e não ser capaz de lembrar o que é chamado. Está bem na ponta da minha língua, mas as palavras não vêm. ”- Paula D.

18. Incontinência

”  Incontinência! É super embaraçoso, eu tenho que usar calcinhas o tempo todo. E assim não é ruim o suficiente, eu tenho cãibras na bexiga aleatória. Como de repente e do nada, minhas cólicas na bexiga e eu tenho que ir imediatamente. Isso causou acidentes. Morgan V.

”  Na verdade, eu posso urinar a cada 15 minutos. Eu pensei que era só eu, eu não tinha ideia que era por causa da fibro! Viagens rodoviárias são ab ****! “- Shelby LS

19. Emoções intensas

“  Com dor, quando é muito ruim fico com raiva, por dor, eu mesmo e os outros. Eu tento avisar as pessoas com quem trabalho em um dia ruim de dor, que se eu choro ou irrito, não são elas, é a dor. ”- Trish G.

20. Gás

”  Gás …” “- Cindy J.

21. Reagindo a dor súbita

”  O sintoma mais embaraçoso é a dor latejante súbita que me faz mudar automaticamente a minha expressão e parar de fazer tudo o que faço, se eu estou no trabalho ou com a minha família. Quando isso acontece, todo mundo percebe a mudança repentina e, em seguida, pergunta o que acontece porque eu ainda pareço estar “em forma” ou “saudável”. – Katherine L.

“Dor de tiros espontâneos que às vezes é debilitante”. Eu posso ter um dia perfeitamente bom e uma dor aguda vem do nada, fazendo-me estremecer ou até mesmo chorar de dor. ”- DeAnna AC

”  Quando o meu corpo de repente se fecha, ou quando eu não posso sair do sofá sem fazer um rosnado embaraçoso. Muitas vezes me pergunto se as pessoas percebem quanto esforço é necessário para que eu faça essas coisas. Terri SA

22. Exaustão

”  Exaustão. Não posso fazer nada por muito tempo ou fico tão cansado que é doloroso manter os olhos abertos. Eu tive que reduzir minhas horas de volta ao trabalho e mal consegui. Eu preciso tirar uma soneca para passar o dia. ”- Kirsten MR

”  Exaustão e isolamento. A fibromialgia me causa grande fadiga e, por sua vez, estou confinada porque tenho vergonha de não poder fazer coisas como encontrar amigos e familiares depois de trabalhar o dia todo.

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