La fibromyalgie de Lady Gaga annonce des millions de patients

El dolor crónico es solo uno de los tantos síntomas presentes en la fibromialgia en casi todo momento, pero para mí, es lo más predominante.El dolor afecta todos los aspectos de mi vida.Pago caro por cada actividad física que hago; incluso la tarea más pequeña, puede conducir a un gran aumento de mis síntomas.El dolor de la fibromialgia es único debido a su gravedad, complejidad, y múltiples sistemas involucrados. Hay tres tipos principales de dolor en la fibromialgia: hiperalgesia, alodinia y parestesia.

De: Maria Benson

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Logan, Utah. Déclaration de Sharon Waldrop, vice-présidente de l’Association nationale contre la fibromyalgie et la douleur chronique dans l’annonce récente de Lady Gaga qu’elle souffre de la maladie:

“Nous félicitons Lady Gaga pour l’acte incroyablement courageux de révéler son diagnostic de fibromyalgie. En partageant son histoire avec le monde entier, elle donne la parole aux cinq millions d’Américains qui m’aiment tant – une majorité écrasante de femmes – qui souffrent de la maladie.

La fibromyalgie se caractérise par une longue liste de symptômes, notamment une douleur chronique et une fatigue invalidante. La cause est encore inconnue, il n’y a pas de remède, pas de traitement efficace ni de compréhension. On peut trouver de meilleurs traitements et un remède en éduquant les gens au sujet de la maladie et des défis dévastateurs qu’elle pose chaque jour à des millions de familles américaines.
L’invisibilité de la fibromyalgie et l’incompréhension du public quant à ses effets font souvent peur aux personnes qui souhaitent révéler leur diagnostic. Quand j’ai eu le diagnostic de la maladie, je pensais que ma vie était finie. Mon corps, une fois en bonne santé, s’est soudainement senti meurtri et brisé, même si j’avais l’air très bien à l’extérieur. On m’a même appelé à utiliser ma carte de stationnement pour personnes handicapées, parce que les gens ne croyaient pas que c’était la mienne. Ceux qui souffrent de fibromyalgie peuvent être leurs amis, collègues, voisins et membres de la famille qui souffrent de cette maladie depuis des années. Nous espérons que le geste courageux de Lady Gaga d’avancer incitera les autres à faire de même.

Il y a plus de réponses, mais nous avons besoin de l’aide de tous pour demander plus de ressources pour les trouver. Nous exhortons le public à contacter ses législateurs et à lui demander de mettre en œuvre et de financer la stratégie nationale de lutte contre la douleur élaborée par le ministère de la Santé et des Affaires sociales pour faire face au fardeau de la douleur chronique aux États-Unis. . Nous sommes impatients de poursuivre nos travaux pour trouver un traitement curatif contre la fibromyalgie. Avec le soutien et la participation de dirigeants tels que Lady Gaga, du gouvernement, d’avocats et de patients, aucun objectif n’est inatteignable. “

L’Association nationale de la fibromyalgie et de la douleur chronique est votre partenaire dans la lutte contre la fibromyalgie et la douleur chronique. Notre objectif est de mettre fin à la douleur chronique, de détruire des vies humaines, de promouvoir un diagnostic précoce, d’encourager la recherche scientifique en matière de traitement et de préconiser des traitements adéquats, abordables et accessibles. Devenez membre en ligne de fmcpaware.org.

Cet article a été publié à l’origine sur fmcpaware.org.

La hiperalgesia se traduce literalmente como dolor excesivo: “hiper” significa exceso y “algesia” significa dolor. Es el término médico para la intensificación del dolor en la fibromialgia.Alodinia es el dolor que siente cuando se toca o roza la piel.Por ejemplo, una leve presión de la ropa, o un suave masaje causa dolor, o también una ligera brisa que sopla sobre la piel.Es hipersensibilidad a estímulos que normalmente no causarían ningún dolor.La parestesia es una extraña sensación nerviosa, que se siente como algo que se arrastra, hormiguea, arde, pica o adormece, por ejemplo, un punto adormecido en el medio del pie, o una sensación de ardor en la espalda.Pero para ser honesto, estas palabras significan muy poco para cualquiera que no tenga fibromialgia.Entonces, para darle a las personas que no la tienen, una idea de lo que se siente vivir con esta enfermedad dolorosa y debilitante, voy a describir el dolor que experimento, de una manera que espero que todos puedan comprender.1. Ardor en la pielAlgunas veces mi piel se siente como si estuviera en llamas, se siente en carne viva.Imagina pasar horas bajo el sol sin protección solar, y luego te das un chapuzón en el mar y el agua salada te quema la piel dañada. Luego te vistes para salir por la noche y tu ropa roza contra tu piel en carne viva.Cuando tienes fibromialgia, la ropa sola puede causar este dolor, no se requiere de la luz solar.2. Dolor punzante/ardienteEste es un dolor que encuentro particularmente difícil de soportar. Es tan severo que me deja sin aliento.El dolor viene en oleadas y se acompaña de náuseas.3. Dolor en las articulacionesMi dolor en las articulaciones es un dolor sordo y palpitante. Principalmente afecta mis rodillas, pero también puede afectar otras áreas.4. Dolor muscularMis músculos duelen constantemente. Incluso la más mínima actividad los hace palpitar y quemar.Me resulta imposible sentirme cómodo cuando me duelen los músculos, me pone tan inquieto.5. Espasmos musculares Experimento espasmos musculares todos los días, están casi constantemente. Es como si no tuvieras el control de tu cuerpo, como si alguna fuerza imprevista te estuviera manipulando.6. Dolores punzantesSientes que alguien te está usando como a una muñeca vudú.7. Entre un picor y un dolor punzanteEstoy seguro de que hay un término técnico para esto, pero “un cruce entre un picor y una puñalada” es la mejor forma de describirlo.Sucede profundamente en mis músculos y es imposible rascarse la picazón. También causa sacudidas en la parte de mi cuerpo afectada.8. Sensación de magulladuraNo solo en la piel sino también en el interior, que se siente magullado, y sensible.Mi pecho y caja torácica se sienten magullados la mayor parte del tiempo, lo que puede hacer dolorosa la respiración (dolor costocondral).9. Sensación de malestar en todo el cuerpoCuando estoy hipersensible siento que tengo un malestar en todo el cuerpo.El más mínimo toque o movimiento envía dolor palpitante alrededor de mi cuerpo.10. RigidezImagine que una persona sana va al gimnasio después de meses de inactividad. Levanta pesas, y tiene un entrenamiento de cuerpo completo.Al día siguiente se sienten rígidos, y luchan por moverse. Una persona con fibromialgia se despierta cada mañana sintiéndose así.Parece que llevara un traje debajo de la piel dos tallas más pequeño.11. Dolor irradiadoExperimento dolor que tiene un punto central, pero se irradia desde ese punto. El dolor puede comenzar en mi espalda, pero también viaja por mis piernas, por ejemplo.12. Dolor causado por el tactoIncluso el toque más leve de un ser querido puede causar dolor.Tengo que usar ropa de dos tallas más grande, hecha de material suave sin costuras. Uso zapatos suaves y planos de un talle más grande, y tengo que cortarme el pelo porque me causa mucho dolor en la piel. El tacto causa muchos de los tipos de dolor que he descrito.13. Migrañas/dolores de cabezaNo creo que pase un día sin dolor de cabeza, puede deberse a la tensión.Mis migrañas se ven agravadas por el estrés y las hormonas. Cuando golpean me vuelvo incapacitado.Pierdo mi visión y el dolor es tan severo…El más mínimo movimiento, toque o ruido envía dolor palpitante alrededor de mi cabeza y cara.14. Cosquilleo en la piel Se siente como si tuviera miles de insectos corriendo alrededor de mi piel. En realidad es bastante espeluznante.15. HipersensibilidadAlgunos días, el ruido resulta insoportable. En un instante, experimento dolor, náuseas, mareos, temblores y un inminente ataque de pánico. Pero no es solo el ruido, también soy hipersensible a los olores, la luz y el tacto. Sí, un olor a perfume fuerte me pueden causar dolor.16. Síndrome del Intestino IrritableLa fibromialgia a menudo va acompañada de otras condiciones, como el síndrome del intestino irritable (SII). Contrariamente a lo que la gente pueda pensar, el dolor del SII no solo ocurre en los intestinos, sino que se irradia a otras áreas del cuerpo, especialmente a la espalda.Es un dolor punzante y ardiente. Los gases atrapados en un intestino ya inflamado, resultan uno de los síntomas más dolorosos del SII, es abrumador.El dolor no es el único síntoma de la fibromialgia, pero es el síntoma que tiene el mayor impacto negativo en mi vida y mi salud. ¡Gracias por leernos!

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