La mayoría de las personas no creen en la fibromialgia, dicen que todo está en tu cabeza. También te has enfrentado a esta persona en tu vida. En algún momento la gente pregunta por su enfermedad. Por lo tanto, es hora de explicar cómo se ve la fibromialgia porque no ha experimentado lo que estamos experimentando. La fibromialgia es la parte más difícil de las personas que no la entienden. Hicimos la pregunta a nuestra comunidad de Facebook en línea ” Vivir con fibromialgia y enfermedades crónicas ” , que dice: ¿Cómo describe su sensación de fibromialgia?
La fibromialgia es un gran incentivo para vivir todos los días. Cuando despiertes y te muevas, aprovecha al máximo. Si te despiertas y no puedes moverte, no lo hagas. Tómate un descanso, lee un libro, mira una película. Puede que no sea lo que quieres, pero eso es lo que necesitas hacer ese día. Mañana es un nuevo día y puede ser diferente de ayer. Gracias por tener mañana porque muchas personas no lo hacen. Sé que es difícil sentirse así cuando estás en agonía todo el tiempo, pero siempre está pasando algo bueno.
No hay palabras para describir lo horrible que es ser un infierno viviente. Me hace sentir que no me queda vida. Sin embargo, hemos reunido algunas de las descripciones de dolor que nuestros miembros nos cuentan a continuación.
Eso es lo que la comunidad comparte con nosotros:
1. Imagina la peor gripe que has tenido y multiplíquela por 10, luego imagina que ser atropellado o atropellado por un automóvil puede decirme cómo es un buen día con fibromialgia. Un mal día realmente desafía cualquier comprensión.
2. Hicieron un 10K con la gripe y cortaron toda la hierba con unas tijeras. Ese tipo de dolor. Pero todos esperan que lo hagas de nuevo al día siguiente porque no pareces enfermo.
3. Dolores que se mueven alrededor de tu cuerpo. Elija un lugar y aguante la respiración hasta que pase, y simplemente muévase a otro lugar. Luchan por fingir que no les gustas y no intentas gritar o llorar. Te sientes cansado, pero no puedes dormir solo una versión del sueño donde escuchas todo y la adrenalina despierta por completo. Cuando su corazón esté tocando y agotado, regrese si puede. Las puntas de los dedos de las manos y los pies a veces se adormecen y no pueden soportar el frío. Sus músculos se contraen y giran, tratando de relajarse y no tensarse, ya que los dolores de cabeza pueden ocurrir a continuación. Tienes depresión y yo personalmente me escapo en la música o en la imaginación para hacer frente a mucho. No siempre se puede hablar bien y es difícil pensar con claridad y concentrarse. Sí, eso es suficiente por ahora. Solo una idea
4. Con Beth W , me siento como un hombre de hojalata. Eso es perfecto, el hombre de hojalata, que tiene que ser engrasado en TODAS las articulaciones. Y alguien sosteniendo una antorcha a TODOS mis músculos doloridos. Con mi cabeza en un vicio. Sí, eso lo resume todo, qué miserable existencia.
5. Marjie C – ¡Me siento como una prisionera en mi propio cuerpo! Nunca se sabe que es la tortura
6. Jessica C : Me siento como si me golpeara un bate. Mis músculos se sienten como si estuvieran siendo derribados y tirados. Siento que tengo un 2 × 4 sentado sobre mis hombros todo el día, la gripe y la muerte …
7. Vickie M : Siento que tengo un pequeño elfo en mi cuerpo que ejecuta una selección de hielo y me golpea las articulaciones y los músculos las 24 horas del día, los 7 días de la semana.
8. Kimmie G- Como un triple tráiler, me adelantó; ¿Cómo cambio mis caderas? me corta la cintura porque la mitad inferior no es amigable; El peor billar de X del peor tipo de gripe 2 golpeó a la humanidad y un período de memoria del tamaño de un nudo … ¡De lo contrario, me siento genial!
9 . Tracey W: Tengo una mente que ama apretar las partes de mi cuerpo como si alguien estuviera clavando sus dedos en la piel y agarrando tus músculos con fuerza.
10. Un asa está al revés, una mochila de 20 libras pesa sobre los hombros, caderas, rodillas, tobillos, pies y manos, dolor. En la parte superior de este dolor hay una sensación de hormigueo, como si su pie se quedara dormido … excepto cuando simplemente jala el pie por todo el cuerpo. Sus ojos están adoloridos por la tensión, su piel es sensible al tacto, su nariz es sensible a los olores. La falta de sueño reparador te mantiene adormecido y cansado.
11. Kerryn E: es como una resaca y un borracho, pero también enfermo como la gripe después de los ejercicios intensos de cuerpo completo y 10 vueltas con Mike Tyson, pero perdido y vivo en otro planeta porque soy un extraterrestre en comparación con otros que lo poseen No puedes entender mi vida como
12. ¡ Es un infierno viviente! Duele cada día El dolor sigue moviéndose. Justo cuando crees que no hay otro lugar para lastimar, te duele la piel. Es como un camión Mack que sigue rodando sobre ti. Necesito horas para bañarme, maquillarme y secarme el pelo. Cuando termine, tengo que sentarme y descansar. Es difícil dormir por la noche porque no puedes encontrar una posición que no te haga daño.
13. Dolor que aumenta de la cabeza a los pies como si alguien vertiera líquido caliente por la garganta y se moviera por el interior de su cuerpo. La parte más difícil es tratar de mantenerse positivo en todo. Nunca se sabe si algún día se manifestará como SII, migrañas al día siguiente y Epstein Barr. luego la depresion Tengo más síntomas cada día. Tengo esas terribles cicatrices en mi piel donde la picazón se volvió tan intensa que me rompí la piel y sangré. Dejó terribles huellas que quemaron. Irónicamente, la quema proviene del interior.
14. Un dolor ardiente insoportable en todo mi cuerpo que se siente como si me estuvieran incendiando. Dolores fuertes en pies y talones que se sienten como si estuviera caminando sobre vidrios rotos. Tómese el cansancio que siente y multiplíquelo por 100. La gripe se multiplica por 10. Dolor ardiente cuando toca la piel. Dolor, que no ayudan las drogas. No puedo trabajar tanto dolor y fatiga. Perdí casi todo por lo que había trabajado tan duro y esperé dos años para que se aprobara mi discapacidad. Al vivir con un dolor severo y debilitante y aún pareciendo normal, me siento culpable porque no puedo trabajar porque la gente me trata como un vago y simplemente no quiero trabajar.
15. Sandra L – Una ladrona que me robó la vida. No hay dos días iguales. Nunca sabes lo que vas a lanzar. Cada día es algo nuevo, un nuevo dolor, una nueva llamarada. Estar en la cama estás luchando contra tu cuerpo solo para pasar el día. Nadie debería tener que vivir, no existe. El dolor es un dolor insoportable que la mayoría de las personas no pueden manejar. No tenemos más remedio que aceptarlo. El área médica realmente nos decepcionó.
16. Tracy W: cuando alguien encontró las cuerdas en todos mis músculos y tendones, se dirigió al muslo. Me siento muy tranquilo y no será una cuña.
17. Imagina un cordón de nylon. Gíralo contra el grano. ¿Ves estas pequeñas aberturas? Vierta en el vidrio triturado y la arena. Ahora gire el cable cerrado. ¿Sientes la arena que evita que el nylon vuelva a su punto original? Ahora imagine que el cordón de nailon es cualquier fibra muscular, tendón y ligamento en sus dedos, manos, muñecas, tobillos, pies y dedos. Ponte los zapatos. Guantes ¿Es incómodo?
Intenta ir ahora. La conducción. De pie. Compra de comestibles. Suena terrible, ¿verdad? Ahora imagina que no tienes alivio. Algunos días, agregas cada parte de tu espalda a la lista. Añadir náuseas. Añadir migraña. Solo quieres dormir, pero el sueño no llega.
Tu cabeza se siente aburrida. Por lo general, pierden palabras en la mitad de la oración. No se puede pensar con claridad. La gente piensa que eres estúpido, incluso si no lo eres. Añadir problemas de salud mental a la mezcla. ¿Te sientes abrumado? Ese es un buen dia Mañana puede ser peor. No puedes planear eso. No recibirá una advertencia.
18 . Si tengo una crisis, me siento como el ácido que fluye a través de mí y me quema de adentro hacia afuera. Pero trato de los días “normales”, no reconocer el dolor; Sólo estoy haciendo lo que tengo que hacer, pero siempre allí para dejar de ser todo lo que sé que podría ser.
El dolor nervioso es horrible y aunque tengo un dolor en el cuello, las caderas, los hombros, las manos y los pies que son bastante constantes, de vez en cuando me dan una punzada en el estómago o el pecho que sale de la nada y me quita el aliento. La última vez que me sentí bien fue durante todo un día cuando el médico me recetó esteroides. No tenía dolor y era hermoso, luego comenzó a quemarme el estómago y causar calambres. Tuve que dejar la medicación. Sin embargo, los problemas de memoria y la fatiga me molestan más. Tal vez porque mi madre tiene Alzheimer y tengo miedo de que me vaya a atrapar.
19. Janice R – Siento que estoy atada a dos caballos y van en direcciones diferentes. Mis brazos a un caballo, mis piernas a los demás. Mis tapones se sienten fuera de la articulación. En tiempos de brotes se pone terrible. Otras veces no es tan malo, pero todavía tiene dolor.
20 de junio J – Siento que alguien está bailando en mi cerebro y eligiendo qué y cuándo adormecerme, atontarme y marearme.
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