Fibromialgia: la enfermedad invisible con dolor muy real.

Se han identificado numerosos genes en los últimos cinco años que pueden ser responsables del desequilibrio neurotransmisor que se encuentra en individuos con fibromialgia.
Cuando alguien nos dice que tiene una enfermedad crónica, nosotros (quizás inconscientemente) comenzamos a buscar “signos” de que la persona tiene un problema médico o no se siente bien. Al igual que con muchos problemas de salud y discapacidades, la fibromialgia no presenta síntomas que alguien necesariamente notaría.

En condiciones como la osteoartritis, los médicos pueden ver el daño interno con pruebas, como rayos X. La fibromialgia no altera el aspecto del cuerpo internamente, y los profesionales médicos suelen diagnosticar esta afección basándose en el dolor generalizado y otros síntomas en el cuerpo.

¿La fibromialgia tiene algún síntoma visible para los demás?

Externamente, la mayoría de las personas con fibromialgia se ven “normales”. Las personas con esta afección encuentran esto frustrante porque a veces sienten que disminuye la legitimidad de su enfermedad; también pueden encontrarlo como una bendición ya que parecen moderadamente saludables.

La actriz AJ Langer, a quien entrevisté para Aches and Gains sobre sus luchas y su éxito final con la fibromialgia, me dijo que estuvo en el hospital casi todos los fines de semana durante un período de tiempo por síntomas de fibromialgia y principalmente dolor. AJ dijo que nadie de sus trabajos de actuación sabía de su estado: se haría arreglar el pelo y el maquillaje, lo que ella denominó su máscara.

En términos de “probar” la profundidad del dolor que sufren las personas con fibromialgia, AJ compartió que su masajista lo dijo mejor.

“Si alguien cuestiona la fibromialgia, todo lo que tiene que hacer es ponerle las manos encima a alguien que la tenga”. El terapeuta se refería al engrosamiento y endurecimiento de la fascia alrededor de los músculos, lo que dificulta la circulación de los músculos. , causando rigidez y un dolor profundo, dos características principales de esta condición dolorosa.

Como mencionamos en nuestro último blog, el experto en fibromialgia de la Universidad de Michigan, Dr. Daniel Clauw, dijo que el dolor de la fibromialgia puede ser causado por un desequilibrio de neurotransmisores que conduce a un “ajuste de volumen” incontrolado, lo que significa que el umbral de dolor del cuerpo el sistema nervioso está muy bajo

Tratamiento de fibromialgia

Al igual que muchos pacientes con fibromialgia, AJ descubrió que una combinación de medicamentos, ejercicio y tratamientos alternativos era la mejor manera de controlar su dolor y ayudar a recuperar el control de su vida.

“Cuando llegas a un punto en el que te derrotan y tu cuerpo no funciona y te parece imposible cuidarte a ti mismo, a veces necesitas el apoyo de la medicación para superar la barrera”.

AJ dijo que toma una “dosis para bebés” de Cymbalta (duloxetina), que es un antidepresivo usado para el tratamiento de la fibromialgia. Este medicamento junto con Lyrica (pregabalina) y Savella (milnacipran) están aprobados por la FDA para tratar esta afección. Además, comenzó a explorar actividades que la hicieron feliz y la distrajo del dolor: comenzó a surfear más y más, y notó que algo sobre el agua la hacía sentir bien, al igual que las caminatas suaves y las clases de yoga de curación. Los pacientes míos se han beneficiado del ejercicio, la terapia cognitiva conductual y la acupuntura también.

Aunque AJ dijo que todavía siente dolor, especialmente en el cuello y la espalda, estas prácticas que adoptó la calman mental y físicamente, permitiéndole vivir su vida más plenamente.

Le pregunté a AJ qué había aprendido al estar en ese lugar de impotencia cuando estaba en su peor momento.

“Te enseña un nivel de compasión por cada otra persona en esta tierra de una manera que las personas que no han experimentado el dolor no son capaces de hacerlo”, dijo.

The Mighty, un sitio web dedicado a mejorar la vida de las personas que enfrentan enfermedades, trastornos y discapacidades, publicó recientemente un artículo sobre una mujer que dice que las personas suelen responder con incredulidad cuando les dice que tiene una afección médica grave porque es “invisible”.

La mujer publicó una foto en Facebook de una nota que dejó alguien en su auto en respuesta a la pancarta de discapacitados en su tablero. La nota decía: “FAKER”. Ahora, ella está alentando a otros a compartir su mensaje “con la esperanza de que las personas que adivinan a los que” no parecen discapacitados “lo verán y tendrán un cambio de opinión”.

En este artículo de Buzzfeed, alguien que lucha contra la enfermedad de Lyme crónica describe cómo es cuando nadie cree que usted está enfermo. Esta mujer fue diagnosticada con la enfermedad de Lyme en agosto de 2014 después de estar enferma durante dos años y medio y visitar a 13 médicos.

A continuación se incluyen enlaces a información sobre fibromialgia y tratamientos alternativos del dolor:

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