Lo que deben saber los familiares de quienes tienen fibromialgia

Este post está dirigido a los familiares y el círculo cercano que rodea a personas con fibromialgia.

Aunque la Fibromialgia no se nota, es muy real. Mucha gente piensa que una persona no está realmente enferma, a menos que se vea enferma. Cuando se tiene fibromialgia, la persona puede verse rebosante de salud (por fuera), aunque por dentro lleva una procesión de terribles síntomas muy reales.


La fibromialgia es una enfermedad difícil de entender. Aunque no existe cura, se puede manejar para tener calidad de vida. Como todos los casos son distintos, los tratamientos como ejercicios, medicamentos o terapias no funcionan igual de bien para todos. Se trata de una búsqueda constante para encontrar aquello que mejor le funcione.


No dejes que las apariencias te engañan. Muchas veces los familiares pueden tener la percepción de que la persona con fibromialgia no está haciendo el suficiente esfuerzo por sentirse mejor, porque no come bien o no hace suficiente ejercicio. Lo cierto es que cada esfuerzo que se realiza, por pequeño que sea, supone un trabajo o sacrificio mucho mayor del que le costaría realizar a alguien sano.


La fibromialgia no es un problema psicológico. Mucha gente piensa que es imposible tener tantos síntomas desgarradores, y que no salga nada en sus exámenes médicos, por lo que con frecuencia, atribuyen esta condición a un problema de origen psicológico. Y es importante saber que existe suficiente evidencia científica que prueba que se trata de una condición real.


Con fibromialgia la vida puede cambiar totalmente. Es natural que la persona con fibromialgia ya no pueda hacer las mismas cosas que hacía antes, o que necesite mucha ayuda de sus familiares para poder realizarlas. Esto puede implicar desde modificar hábitos hasta tener que cambiar de empleo.


Es normal la fluctuación en los niveles de actividad. Una persona con fibromialgia puede estar muy activa durante un día, como puede ser que otro día ni siquiera pueda salir de la cama. La persona no es perezosa ni está fingiendo para evitar trabajo. Habrá días en que su cantidad de energía será muy baja. La fibromialgia es una enfermedad con muchos altibajos.
La persona con fibromialgia vive en un sufrimiento permanente. Aunque no lo exprese constantemente, siempre siente dolor en todo el cuerpo, un cansancio extenuante, y muchos estímulos externos, como olores, ruidos, luces, el clima y otros factores, pueden hacer que su malestar empeore. Trata de ponerte en su lugar todo el tiempo para que puedas entenderle.
A veces la persona con fibromialgia evita el contacto físico. Se puede experimentar mucho dolor con estímulos no dolorosos como apretones de mano, palmadas en la espalda, toques en los brazos y hombros, y hasta con un fuerte abrazo, en general, cualquier toque que produzca roce o fricción. Nadie debe ofenderse si en algún momento, se trata de evitar este tipo de intimidad.


La fatiga de la fibromialgia no es un simple cansancio. No es solamente agotamiento físico, sino también mental, que no mejora con el descanso, y puede postrar a una persona en cama por varios días. La persona se siente consumida por el cansancio, exhausto o extenuado.


La persona con fibromialgia no es antisocial ni apática. Muchas veces rechazan invitaciones o dejan de asistir a reuniones, porque están exhaustos, están pasando por una crisis, o porque al tener una cantidad de energía limitada, tienen miedo que ciertas actividades puedan desencadenar un brote, lo que podría empeorar todos sus síntomas de un momento a otro.


La fibromialgia ocasiona problemas cognitivos. La persona olvida cosas (a veces pequeñas, a veces importantes) y tiene dificultad para concentrarse; esto se conoce como fibroneblina. Con frecuencia provoca que pierdan cosas o se sientan desorientados.


Evitar el estrés es fundamental para la persona con fibromialgia. Se ha demostrado que el estrés exacerba los síntomas de la fibromialgia, aumentando su dolor, cansancio y malestar general. Procura brindar un ambiente tranquilo en casa y evitar situaciones y factores estresantes.
La persona con fibromialgia tiende aislarse. Esto no significa que quiera terminar con su vida social o que ya no te aprecie. Por el contrario, trata de entenderle y de mantener el contacto con ella, demostrándole que cuenta con tu afecto y apoyo cuando lo necesite. Ofrécele tu ayuda para alguna tarea que en algún momento no pueda realizar o no pueda realizar sola, como hacer las compras o recoger los niños en el colegio.


El apoyo y comprensión de sus familiares puede hacerles sentir mejor. Aunque hay muy poco que puedes hacer con respecto a la enfermedad, no lo trates como si nada pasara, porque esta actitud puede ser percibida como apatía o desinterés, haciéndole sentir que no le importas, lo que afecta tanto su relación contigo, como su salud física y emocional. Por el contrario, ayúdale con tareas de la casa que puedan implicarle mucho esfuerzo, como tender ropa o hacer las camas.


Los familiares de alguien con fibromialgia deben mantenerse bien informados. Si aún no sabes de que se trata esta enfermedad, busca en Internet, hay infinidad de fuentes de información al respecto, lo que te permitirá ayudar a tu ser querido a manejarla mejor.


Acompáñalo a sus citas médicas. Esta es una de las mejores maneras de demostrar tu apoyo. Además, lo apoyas para completar los tratamientos, al mismo tiempo que enteras del estado de su condición y su progreso.


Una buena comunicación es fundamental en la familia. La fibromialgia genera sentimientos tanto en el paciente como en los otros miembros de la familia. Es indispensable expresarlos sanamente para evitar resentimientos y actitudes hostiles que solo pueden empeorar los síntomas o causar crisis en el enfermo.


Espero que estos sencillos consejos le lleguen a todos aquellos que tengan algún ser amado que esté enfermo de fibromialgia o alguna otra condición de dolor crónico.

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