Testimonios: “Sufro de fibromialgia”

Son jóvenes y fibromialgia barrieron todos sus sueños de aventura: Hoy en día, Kiani y Tamara están prácticamente pegados a una silla y la lucha diaria contra el dolor y el prejuicio.

Kiani, de 23 años, fue diagnosticado el año pasado

“Crecí como una niña despreocupada, alegre y rara vez enferma. En la escuela, todo iba bien, y pronto descubrió que quería hacer era niñera. La vida me sonreía … Hasta que, en mis últimos años de estudio, no tengo más y más problemas con el estómago y los intestinos. El médico que vi me dijeron que tenía el síndrome del intestino irritable. Tenía que mantenerse regularmente en casa, y yo estaba agotado. No pudimos encontrar la verdadera causa de mis síntomas: por lo general, me dijeron ‘es el estrés “.

Al principio, mis padres estaban realmente luchando para soportar que demasiado a menudo se quedan en casa en vez de ir a clase, me pidieron que hacer un esfuerzo.

fatiga extrema

Existen dos años, me gradué en el vivero y quería continuar mis estudios para ser maestra en la guardería. Pero pronto me di cuenta de que yo no era capaz de seguir una formación tan pesada: nada más que el tranvía y caminar que hacer para llegar a la escuela, yo estaba agotado. No tenía más remedio que poner en el armario de mi sueño de estudiar y trabajar en un vivero. Pero después de una semana de trabajo, cogí la gripe … En general, se supera el virus después de una buena semana de descanso, pero no podía deshacerse de: dos semanas más tarde, ‘siempre tenía dolores terribles y yo estaba muy cansado.

Fui casi a diario al médico y él se arrancaba los cabellos con mi caso … Durante meses, me quedé baja, sentí que algo estaba mal con mi cuerpo.

A mi alrededor vi que algo estaba mal, pero el médico no podía entender lo que estaba sucediendo. En su desesperación, di vuelta a la Internet para encontrar una explicación para mis síntomas y caí sobre la fibromialgia: Hablé con mi médico que no descarta esta hipótesis y me remitió a una especialista. Un mes más tarde, tuve una consulta.

Un último veredicto

El especialista me puso a través de una serie de pruebas y análisis: al final, el veredicto era definitivo. Tenía 99 centavos posibilidades de padecer fibromialgia, pero el diagnóstico no pudo ser confirmada hasta seis meses después, cuando mis síntomas continuaron. Todos mis problemas no sólo habían mantenido, habían aumentado en intensidad durante los últimos seis meses. En cuanto a mis problemas intestinales, que habían disparado … Me volvió a sufrir una serie de pruebas, también en puntos específicos de la fibromialgia. Y el resultado fue implacable: Yo llevaba la marca de la fibromialgia. Al principio no pude ver bien lo que significaba: Yo estaba muy decepcionado al saber que esta enfermedad no se puede curar y que no puede hacer mucho, en todo caso. En el trabajo, que no entendían mi enfermedad;

dolor muscular constante

Hoy en día, constantemente cerca del dolor muscular. Mi cuello y los hombros son las zonas más tensas: constantemente están bloqueadas. Cuando me despierto por la mañana, estoy tan tenso que necesito más de una hora de levantarse. También tengo que luchar contra la fatiga extrema:

algunas mañanas, la ducha es un desafío insuperable, tengo que aumentar mi energía para caminar hasta el baño. Debido a síndrome del intestino irritable, que a menudo tienen grandes episodios de diarrea y también me entra el pánico con regularidad o ataques de alergia.

Mentalmente, tengo grandes dificultades con mi enfermedad:  Tengo todo el tiempo siento atrapado en mi propio cuerpo. Quiero hacer un montón de cosas, pero mi cuerpo me mantiene siempre … Todas estas cosas cotidianas, como un largo paseo con el perro o una tarde de compras, son inaccesibles para mí. También estoy extremadamente sensible al calor o al frío: si hace demasiado frío o demasiado caliente, tengo problemas para mover o estoy nadando. Sólo que, a veces, de plano me impide salir … Y luego hay también todos los prejuicios sobre la fibromialgia, con los que tienen que vivir con regularidad: muchos vecinos y amigos permanecen acampados en las ideas recibidas. “Tan joven, y ella no funciona! Ella no parece ir tan mal, todavía? “Dicen muchas cosas en la espalda, pero no puedo hacer nada.

Una lucha contra la depresión

En este momento tengo que luchar contra la depresión. No he trabajado durante dos años y medio, y no sé si puedo comenzar un día … Sin el apoyo de mis padres y mi novio, lo habría hecho ya se hundió en la depresión. Mi perro también me ayuda enormemente. Cuando me siento mal, siempre se las arreglan para inyectar un poco de alegría …

Mi novio me conocía cuando aún no había recibido el diagnóstico y que podría vivir casi normalmente. Me vio poco a poco me deteriorándose en los últimos años, pero por suerte siempre tenía mucha comprensión y nunca pensé que me dejara.

Benny está contento conmigo, que no necesitaba para salir los fines de semana o encontrarse con amigos: este es mi mayor felicidad. El año pasado, a vivir juntos, justo en frente de mis padres. Cuando tengo un problema con las tareas domésticas, mi madre sólo me dan una mano. Mi blog en facebook, Mundial de Kiani, también me trae una gran cantidad de confort: Pongo toda la poca energía que me queda. Para la mayoría de las cosas, que se convirtió en dependiente de los demás: Voy a tener que acostumbrarse a él … No es fácil, pero no tengo otra opción. Tengo que aprender a apreciar las pequeñas cosas de la vida cotidiana y abandonar mis grandes sueños. El único que no me rindo, este es el sueño de formar una familia: Quiero ser una mamá. Físicamente, no va a ser fácil para mí y voy a necesitar ayuda externa, pero si hay una cosa que Benny y yo podía sacrificar todo, es bueno tener un hijo juntos … ”

Tamara, de 31 años, ha estado luchando durante diez años por su salud

“Cuando era pequeño, tenía un problema en la escuela. Había dificultades de aprendizaje y estaba acosado. Sin embargo, gracias a muchas horas de trabajo y mi voluntad, finalmente se graduó de la secretaria médica. Me ofrecieron un trabajo en un hospital. Mi primer trabajo se mezclaban las responsabilidades y el estrés: que rápidamente tuvo un impacto en mi salud. Yo sufría de presión arterial alta, tenía un dolor continuo en el pecho y estaba agotado debido a los continuos cambios de horarios. Durante un tiempo, me traje a casa del trabajo … Mi doctor finalmente me recetó una licencia por enfermedad y me envió a un fisioterapeuta para tratar la inflamación del esternón. Después de una semana, mi dolor no se alivió, pero regresó al trabajo, mientras se busca otro empleo, con mejores horarios. Terminé la búsqueda de un nuevo puesto de trabajo menos estresante a otro hospital. Durante seis meses, todo iba bien, hasta que siento un dolor agudo en la mandíbula y los dientes: las muelas del juicio salió, y se llevó a recuperar a través de la cirugía.

analgésicos potentes

La operación fue muy bien, pero pocos días después, empecé a tener terribles migrañas que no sucedieron. Volví al trabajo después de dos semanas, pero no era fácil … me sentía más y más dolor en la mandíbula, así que volví de un cheque: al parecer, mi mandíbula había sido maltratado durante intervención, y yo sólo hay que dejar un poco de tiempo para sanar. Así que tomé analgésicos, en casa y también en el trabajo.

Rápidamente, los analgésicos simples ya no eran suficientes, por lo que se prescribió fármacos mucho más pesados.

Inmediatamente después me convierto en forma permanente rojo y era difícil volver a casa por la noche en coche. Me negaba obstinadamente a dejar de trabajar o tomar licencia por enfermedad. Pero poco después, tuve una inflamación de la muñeca y se estaba haciendo peor … Al mismo tiempo, mi padre fue diagnosticado con cáncer, lo cual hizo que mi trabajo en el hospital todavía más difícil. Y pronto sentí que mis colegas no fueron amables conmigo. Empecé a buscar un nuevo trabajo, y me encontré en el servicio mutuo médica. Tuve un jefe que yo y un trabajo que me gustó realmente entiende: por una vez, todo pareció ocurrir lo mejor. Mi novio y yo habíamos planeado irse a vivir juntos el próximo año y empecé a cocinar clases por la tarde.

La compota de vuelta

Al principio todo iba bien, pero pronto me sentí un dolor en la espalda cuando estaba celebrando una sartén. Una vez más, tuve que tomar analgésicos muy fuertes, y luego me vi obligado a abandonar el curso. En el trabajo, también, estaba sentado a mí mismo más y más doloroso. El médico pensó que mi espalda estaba demasiado tensa y me envió a un fisioterapeuta. Pero no fue mejor …  Al final, cuando por fin había encontrado un trabajo que me ha gustado, mi salud me hizo una vez más palos en las ruedas.

 Me encontré a tomar cursos especializados sobre el dolor de espalda, sin que esto tenga ningún efecto. Estaba tan desesperada que terminé yendo a ver a un neurocirujano con la esperanza de que me ayuda, pero me encontré demasiado joven para una operación y me aconsejó seguir las sesiones de fisioterapia, mientras teniendo resto … en el proceso, me puso de baja por enfermedad durante tres meses. Fue muy difícil de tragar.

graduado

Pero cuando me encontré en casa, me di cuenta de que realmente necesitaba descansar. Dormí mucho, yo estaba constantemente tomando analgésicos y me quedé con las sesiones de terapia física, además de “escuela de espalda”. Ya no era capaz de hacer nada y que tenía que acostarse con tanta frecuencia como sea posible. Incluso cuando fuimos con mi novio, que tuvo que soportar ver a mi mentira. Afortunadamente, él fue muy comprensivo … No vivimos juntos, nuestra relación no tiene que sufrir demasiado de mis problemas de salud. Mi licencia por enfermedad se extendió dos veces durante tres meses, pero mis problemas de espalda no han mejorado hasta el momento.

Cuando nos dimos cuenta de que incluso las epidurales no tuvieron efecto, estaba quemado. Mientras tanto, yo permanecido nueve meses de baja por enfermedad y que, evidentemente, ha tenido un impacto en mi trabajo: Me despidieron por razones médicas.

Fue un golpe para mí, yo estaba completamente abrumado y me hundió en la depresión.

Una operación de espalda

A medida que el médico le había encontrado una lágrima en mis discos lumbares, finalmente tuve la cirugía. Todo fue bien, pero mi recuperación fue muy lenta y complicada. Normalmente habría tenido que caminar de nuevo después de dos o tres meses, pero nueve meses después, todavía tenía la celebración en mis piernas problemas. Mi novio y yo decidimos vivir juntos. Sin embargo, durante ese tiempo, podría hacer muy poco. Mi madre incluso se despidió para volver a casa y me ayude a ducharse, vestirse, una gran cantidad de pequeñas cosas de la vida cotidiana. Cuando volví al cirujano, dijo que la operación no había trabajado en mí. Antes de pasar a la mesa de operaciones, mi novio me advirtió que tenía que tener cuidado,

El diagnóstico de la fibromialgia

Busqué y encontré un nuevo trabajo a tiempo parcial en la oficina de un médico de cabecera en mi barrio, y me entregué por completo en este nuevo trabajo. Pero incluso si no era a tiempo completo, yo estaba agotado rápidamente. Como ya había pasado por muchas cosas en poco tiempo, mi médico me aconsejó ir a ver a un psicólogo. Mientras tanto, yo estaba siendo dolor de mandíbula, cabeza y espalda. Y luego, en 2015, me encontré con un nuevo fisioterapeuta que descubrió una obstrucción grave en el cuello: quería tratarme acupresión. Y cuando se pulsa uno de los puntos asociados con la fibromialgia, sentí lágrimas de dolor que invaden los ojos. En ese momento, se menciona por primera vez el diagnóstico. Se confirmó el año siguiente, después de una serie de pruebas concluyentes. Al principio estaba feliz de finalmente poner un nombre a todos los problemas que he tenido que soportar hasta el momento. Pero la euforia duró poco cuando supe que no había solución a esta enfermedad. Acabo de recibir recetas de magnesio y consejos para moverse tanto como sea posible … Algo que, de hecho, no podía hacer!

La galera de amigos

A través de Internet, descubrí la Liga de los pacientes con fibromialgia, y rápidamente aterricé en una reunión de apoyo entre los pacientes. dolor en las articulaciones, dolor de espalda, dolores de cabeza, problemas intestinales: todo lo que había vivido durante años fue revisado y se vinculan a la fibromialgia. Las piezas del rompecabezas finalmente montado … Además, mi perfil fue considerada como típica de la gente: siempre listo para otro, incapaz de abandonar el trabajo, incapaz de decir “no” y de sobra sus esfuerzos …

Hoy estoy de nuevo en paro durante un año. En febrero, empecé una terapia conductual en el Hospital Universitario, para aprender a llenar mi día de la mejor manera posible a la luz de mi fibromialgia. Esta terapia debe durar un año, después de lo cual yo debería ser capaz de reanudar el trabajo. Pero tengo que cambiar drásticamente mi forma de vida, y no sé qué tipo de trabajo que correspondería a este nuevo entorno.  Idealmente, me gustaría empezar voluntario, por lo que tranquilamente podía ver lo que todavía soy capaz de hacer.

Una relación difícil

Mi círculo se redujo considerablemente en los últimos años: una vida social muy activa, me fui sin contacto con el exterior, o casi. Afortunadamente, a través de la Liga, he conocido a personas que se han convertido poco a poco amigos de confianza. Cada cita exterior debe ser planificado con mucha antelación, y todavía estoy probable que renunciar a ella en el último minuto, dependiendo de cómo me siento ese día o en ese momento.

En mi no relación, no es simple: mi estado ha causado a menudo tensiones y dudas en mi compañero  Mis problemas de espalda reducen drásticamente mi privacidad y el tratamiento que tomo ha hecho mucho bajar mi libido.

Mi fibromialgia era una prueba para nuestra relación, pero ahora estamos juntos durante más de diez años y hemos pasado por muchas cosas. Afortunadamente, ni él ni yo quería tener un niño formar una familia estaba por encima de mis fuerzas.

Un gran malentendido

Hay un gran malentendido por parte del mundo exterior vis-à-vis los pacientes con fibromialgia. Yo mismo hubiera padecido muchas veces … Para largas distancias, utilizo una silla de ruedas, porque debido a mis dolores musculares y la fatiga, no soy capaz de caminar muy largo. Ahora vivo en el día a día: no está en mi naturaleza, pero no tengo otra opción. Estoy haciendo acupuntura, tomo analgésicos, antidepresivos y sedantes, y estoy seguido por un psiquiatra para mis trastornos del sueño. Dedico mi energía a mi tratamiento clínico del dolor y mi terapia conductual. También trato de hacer algunas tareas domésticas o creativas cosas que hago cuando no tengo los dedos demasiado tensos.

Tengo una ayuda a domicilio, para ayudar a preparar comidas, hacer detergentes para la ropa, planchar, ir de compras y paseos. También tengo a alguien que me ayude a lavarse y vestirse.

Mi mayor objetivo ahora es crear y desarrollar un grupo de apoyo para las personas con fibromialgia. De esta manera, mi vida puede servir a otras personas, ya pesar de mis limitaciones, creo que vale más “.

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