La fibromialgia me ha cambiado de muchas maneras diferentes, la mayoría de las veces no me siento como de mi edad y, según algunas personas, tampoco parezco de mi edad, pero es sorprendente lo que una sonrisa falsa y un poco de maquillaje pueden hacer. puede hacerte lucir como una persona normal, feliz y saludable, pero no es así como me siento en absoluto, me siento débil y cansado y sin energía y con mucho dolor sin cura y muy poco tratamiento que casi nunca funciona y no puedo Sigo adelante con la vida cotidiana como los demás, me siento perdido y aislado y siento que existo pero no vivo realmente en este mundo.
La fibromialgia es una enfermedad mal entendida y el principal problema al que se enfrentan casi todos aquí es la falta de comprensión y apoyo. Si vive con fibro u otra enfermedad crónica, escuchó comentarios tan inofensivos que en realidad rompieron el corazón en millones de pedazos y empujaron su espíritu hacia abajo.
Esto es lo que la comunidad comparte con nosotros:
1. Siempre estás enfermo
- > ¡SIEMPRE estás enfermo! Simplemente levántese y comience a moverse … ¡seguramente comenzará a sentirse mejor! – Patricia D
- > Siempre tienes dolor de cabeza – Sussie
- > ¿Hay algún lugar en el que NO HAGAS daño? – Cecilia
2. No te estás esforzando
- > Sé exactamente cómo te sientes pero en realidad tengo un trabajo ”-Branda
- > Deja de usarlo como excusa, debes esforzarte, cuanto más ejercicio haces, más fácil se vuelve. -Starvoula
- > Solo necesitas hacer más ejercicio. – Candice
- > La gente sugiere que debería mudarme más, ir a otros lugares para preguntar sobre mi EM, etc.- Clarisse
3. Pierde algo de peso
- > Mi esposo me dice que si perdieras ese peso que subiste, no estarías así. Tu cuerpo no está acostumbrado a cargar con todo eso. Él nunca simpatiza con mi dolor. Finalmente le pedí que leyera sobre fibro el otro día. Su respuesta, los médicos no dicen que eso no es real, está en tu cabeza. Y lloro de dolor. – Kristi
- > Los comentarios de mi médico sobre mi aumento de peso (que se debe a los medicamentos) y la necesidad de hacer ejercicio son deprimentes. No puedo funcionar normalmente y ya ni siquiera me reconozco. ¡Gracias por señalar lo obvio! – Jenny
- > Básicamente, cuando me dijeron que no tengo fibromialgia, es solo mi peso (vino de un miembro de la familia), ese mismo miembro de la familia me dijo recientemente que me “salvará”. – Rosa
- 4. Es una cosa mental
- > Es una cosa mental. Tu cuerpo no duele, es solo tu cerebro mintiéndote.- Demetris
- > Si arreglas tu estado mental, no sentirás más dolor y eso lo dijo mi propio Dr. – Ginna
- > ¿Ha pensado en acudir a un psiquiatra? – Donna
- > Está en tu cabeza… – Genevieve
- > Un profesional de la salud mental me dijo que era hipocondríaca por preocuparme por mi salud y si podría participar en las actividades de verano- Rose
- > “Yo también me duele. Chúpalo ”-mi padre de 59 años. Tengo 24 años – Pikasue
- > La gente tiene más condición que tú y se levantan n van a trabajar, así que cuanto antes puedas lidiar con el problema que sea, n te sentirás mejor, mi reumatólogo dijo eso. – Vanessa
- > ¡Todos tenemos dolores y molestias porque somos viejos! – Julia
- 6. Haga ejercicio
- > Tengo AR, Sjogren y Fibro. La gente sugiere que salga y camine como solía hacerlo … 2 millas por día, seis días a la semana durante veintidós años que caminé. Necesito nuevas rodillas y una cirugía de espalda debido a la AR … así que no puedo empezar a caminar de nuevo. – Gayland
- > Haz más ejercicio, sigue tu rutina normal de sueño – Melissa
- > “¡Eres tan joven! Lo superarás con el paso del tiempo ”no, Susan. No lo dejaré crecer. Pero gracias. – Bobbi
- > Eres demasiado joven para tener tanto dolor – de muchos médicos – Stephanie
- > Siempre tienes dolor, eres demasiado joven para quejarte de los dolores de los ancianos. ¿Por qué no dejas el trabajo si te molesta tanto? – Charlette
- > No es tan malo que debas intentar tener que trabajar tantas horas al día. Solo les digo que desearía poder hacerlo, pero la razón por la que perdí mi último trabajo en los primeros tres días fue porque no podía permanecer de pie durante tres horas sin que el dolor fuera tan fuerte que apenas podía caminar para tomar un descanso. cuando llegó el momento.
- > “No eres el único que sufre. Estoy en discapacidad. ¿Recordar?” – Mi mamá – kristyn
- > Todo el mundo tiene dolor, todos nos levantamos y lo afrontamos. Estás siendo un vago “- Harry
- > Todo el mundo tiene dolores y molestias ”- Beverly
- > Supéralo Tengo dolores todo el tiempo y todavía voy a trabajar ¡Necesitas ser más fuerte y dejar el dolor en el fondo de tu mente! -Jenny
- > “Dices que estás lisiado, pero acabo de verte caminar, así que estás mintiendo”. – Harry
- > “Estas personas son basura humana, que intentan robarles dinero a las personas que realmente trabajan”. – Gerard
- > Le dije a mi hermana que una entrevista de trabajo salió mal debido a mi niebla de fibromialgia. Ella me dijo que no creía “eso es una cosa” – Daniele
- > Al menos no es cáncer ”- Mickie, Misty y Tiffany. (Lea también Fibro: A cancer Connector)
- > Cuando las personas se comparan con otra enfermedad … básicamente si no estás muriendo, eso descarta el hecho de que un síndrome crónico sin cura no afecta tu vida entera. El otro día alguien me dijo que mi fibromialgia demostró que las vacunas son malas, Dios mío, simplemente no puedo. Le dije a esta mujer que necesitaba educar a su yo ignorante. – Noelle
- > No es peor que el cáncer, ¡lo obtuve de mi ex esposa! -David
- > “¿No es solo autismo? – Louise
- 11. ¿Quién te lo dijo?
- > Mi última cita con el médico, mi médico me dijo ¿quién te dijo que tenías fibromialgia? … Bueno, ¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿?? ??????????????????? Algunos médicos simplemente no piensan antes de abrir la boca…. esto realmente me hizo retroceder- Roberta
- > Me han tratado como si estuviera loco. Algunos de ellos no creen que Fibro sea real. Lo he tenido varias veces. Espero que nunca tengan una condición de dolor, ¿verdad, smh? Leigh.
- Mi hija de 6 años me dijo que le dijo a su amiga que no podía jugar porque tenía que cuidar a su mamá enferma. -Ashley
- Mi hija de 12 años pregunta si podemos ir a algún lado y lo primero que dice es NO TE PREOCUPES, MAMÁ, HAY MUCHOS LUGARES PARA SENTARTE… – Ashley
- Ojalá estuvieras mejor para que pudiéramos hacer más cosas ”… .. Me siento culpable por estar enferma. – Tammi
- “Solo tienes que ser más feliz” – Oneida
- No se dice nada, pero si menciono algo al respecto, me ponen los ojos en blanco y suspiros como “aquí vamos de nuevo” – Andie
- Controla tu dolor de alguna manera No es solo a ti lo que te duele ”, mi hermano después de que me perdí otra reunión familiar. Ponga los ojos en blanco, Kimberly.
- Lo peor fue que mi ex me dijo que solo era una carga para él. No quería tener que preocuparse por mí nunca. Cuando he pasado años cuidándolo, llevándolo a los médicos, estando allí para las cirugías y para saber qué se supone que debe hacer. Pero eso se llevó la palma. Yo era una carga para él. – Mellisa
- ¿No hacen una pastilla para eso? – Sherrie.
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