{"id":6882,"date":"2021-03-02T06:50:34","date_gmt":"2021-03-02T06:50:34","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2021\/03\/02\/no-pierdo-la-esperanza-de-que-en-un-futuro-haya-algo-que-me-alivie\/"},"modified":"2021-03-02T06:50:34","modified_gmt":"2021-03-02T06:50:34","slug":"no-pierdo-la-esperanza-de-que-en-un-futuro-haya-algo-que-me-alivie","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2021\/03\/02\/no-pierdo-la-esperanza-de-que-en-un-futuro-haya-algo-que-me-alivie\/","title":{"rendered":"&quot;  No pierdo la esperanza de que en un futuro haya algo que me alivie&quot;"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>Mi mayor problema, desde el a\u00f1o 2013, en que empec\u00e9 con grandes molestias y dolores es el ATRAPAMIENTO DE LOS NERVIOS PUDENDOS, LA NEUROPAT\u00cdA Y EL S\u00cdNDROME MIOFASCIAL P\u00c9LVICO.<\/p>\n<p>El diagn\u00f3stico tard\u00f3 mucho, demasiado, tanto que ya creo que no tiene soluci\u00f3n. Pas\u00e9 por infinidad de especialistas: Ginecolog\u00eda (varios ginec\u00f3logos), Digestivo, Proctolog\u00eda, Dermatolog\u00eda, Psiquiatr\u00eda, Psicolog\u00eda, Neurolog\u00eda, Neurofisiolog\u00eda.<\/p>\n<p>Me dieron varios diagn\u00f3sticos err\u00f3neos, que podr\u00edan haber afectado a mi vida privada, as\u00ed como m\u00faltiples tratamientos. Los m\u00e9dicos no ten\u00edan ni idea de lo que yo ten\u00eda pero parece ser que no pod\u00eda salir de sus consultas sin un diagn\u00f3stico.<\/p>\n<p>Alg\u00fan especialista me dijo que yo ten\u00eda nada, que lo que ten\u00eda que hacer era irme al psiquiatra. Alg\u00fan familiar me dijo que no pod\u00eda creer como estaba si realmente no ten\u00eda ninguna enfermedad.<\/p>\n<p>Tardaron m\u00e1s de un a\u00f1o en diagnosticarme y el da\u00f1o ya estaba hecho. Ya que, en la Seguridad Social no se hac\u00edan cargo de m\u00ed, por desconocimiento, tuve que tirar de la sanidad privada, haci\u00e9ndome un gran agujero en mi bolsillo familiar.<\/p>\n<p>Es una enfermedad muy invalidante que psicol\u00f3gicamente te destroza, ya que por lo menos en mi caso, ning\u00fan tratamiento farmacol\u00f3gico ni tratamiento intervencionista me ha hecho efecto. Tambi\u00e9n la familia lo sufre pues afecta a todos los miembros de la unidad familiar, marido, hijos, etc. Mi marido no sab\u00eda ni que hacer, c\u00f3mo ayudarme o c\u00f3mo aconsejarme.<\/p>\n<p>Tambi\u00e9n a nivel laboral afecta; he tenido dos bajas m\u00e9dicas muy largas, despu\u00e9s de las cuales me han dado el alta m\u00e9dica sin haber encontrado mejor\u00eda. Yo trabajo en la Administraci\u00f3n, soy funcionario, pero estoy segura que si hubiera estado trabajando en una empresa privada ya estar\u00eda en la calle hace mucho.<\/p>\n<p>A d\u00eda de hoy, los m\u00e9dicos siguen dando palos de ciego, muchos tratamientos pero ninguno que de resultado. En fin, un horror. No pierdo la esperanza de que en un futuro haya algo que me alivie, pero hoy por hoy sigo aguantando este dolor a diario; desde que abro un ojo por la ma\u00f1ana hasta que lo cierro por la noche para dormir. Si en un momento dado el dolor es insoportable lo \u00fanico que puedo hacer es procurar dormirme y as\u00ed olvidarme del dolor. Todo esto ha limitado much\u00edsimo mi vida social, laboral, personal, etc.<\/p>\n<p>Espero que se siga investigando y no se nos deje en el olvido, vivir as\u00ed no es vivir.<\/p>\n<p>\u00daltima actualizaci\u00f3n 02\/03\/2021<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/15001-no-pierdo-la-esperanza-de-que-en-un-futuro-haya-algo-que-me-alivie\" target=\"_blank\" rel=\"noopener\">&quot;  No pierdo la esperanza de que en un futuro haya algo que me alivie&quot;<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Mi mayor problema, desde el a\u00f1o 2013, en que empec\u00e9 con grandes molestias y dolores es el ATRAPAMIENTO DE LOS NERVIOS PUDENDOS, LA NEUROPAT\u00cdA Y EL S\u00cdNDROME MIOFASCIAL P\u00c9LVICO. El diagn\u00f3stico tard\u00f3 mucho, demasiado, tanto que ya creo que no tiene soluci\u00f3n. Pas\u00e9 [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-6882","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>&quot; No pierdo la esperanza de que en un futuro haya algo que me alivie&quot; - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/sindromecharge.es\/index.php\/2021\/03\/02\/no-pierdo-la-esperanza-de-que-en-un-futuro-haya-algo-que-me-alivie\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"&quot; No pierdo la esperanza de que en un futuro haya algo que me alivie&quot; - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\" \/>\n<meta property=\"og:description\" content=\"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Mi mayor problema, desde el a\u00f1o 2013, en que empec\u00e9 con grandes molestias y dolores es el ATRAPAMIENTO DE LOS NERVIOS PUDENDOS, LA NEUROPAT\u00cdA Y EL S\u00cdNDROME MIOFASCIAL P\u00c9LVICO. 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