Si vive con una enfermedad crónica como la fibromialgia, es posible que esté demasiado familiarizado con los síntomas frustrantes e indeseables que puede causar. Aunque no hay razón para sentirse avergonzado de ningún síntoma o efecto secundario que experimente, aún puede ser embarazoso cuando la niebla cerebral hace que olvide lo que estaba diciendo en medio de una importante reunión de trabajo, o un repentino estallido de dolor lo hace caer los platos que estabas guardando en la cocina.
Si bien puede ser difícil hablar sobre los síntomas menos glamorosos que fibro puede producir, ser honesto y abierto sobre las muchas maneras en que puede afectar a alguien es un paso importante hacia la toma de conciencia de esta condición compleja ya menudo malentendida. Es por eso que le pedimos a nuestra poderosa comunidad que compartiera algunos de los síntomas de la fibromialgia “vergonzosos” que han experimentado, síntomas de los que es posible que no hablemos a menudo, pero que sin embargo merecen reconocimiento y comprensión.
A pesar de que los síntomas del fibro (así como algunos efectos secundarios de la medicación) pueden estar totalmente fuera de su control, puede ser desafiante lidiar con los efectos físicos, emocionales y cognitivos que fibro puede causar. Si tiene problemas con alguno de los siguientes síntomas, sepa que no está solo.
Esto es lo que nuestra comunidad nos dijo:
1. Niebla cerebral
“La niebla Fibro se lleva la palma”. No hay nada más vergonzoso para mí que hablarle a alguien por teléfono, o realmente a cualquier persona en general, y usar constantemente palabras de relleno porque tengo problemas para encontrar las palabras que necesito transmitir durante la conversación. Utilizo muchas notas Post-it y establezco recordatorios para casi todo. “- Bee E.
” No poder procesar lo que alguien te está diciendo y luego parecer descortés al preguntar qué dijeron más de una vez porque para tu cerebro pueden estar hablando un galimatías”. – Dani S.
” Definitivamente la niebla del cerebro. Es tan vergonzoso perder mi hilo de pensamiento a mitad de la frase y ser incapaz de mantener una conversación inteligente, o olvidar por completo algo que alguien me contó. Es horrible. “- Molly S.
2. Sudoración excesiva
” Para mí, creo que es la sudoración excesiva sin razón aparente. La incapacidad de regular la temperatura de su propio cuerpo es frustrante “. – Rachel P.
” ¡Sudando! La menor cantidad de movimiento y estoy sobrecalentado y el sudor goteando por mi cara. Estoy por todas partes en el trabajo y siempre ardiendo. ¡Hace mucho frío afuera y las otras chicas tienen un calentador extra junto a ellas y aquí me estoy muriendo con un ventilador! “- Christina K.
“Como una mujer de 27 años [con] fibromialgia y endometriosis, a menudo sufro sofocos realmente malos. Es vergonzoso comenzar a abanicarme de repente o quitarme ciertas prendas de vestir en un intento de aliviar la incomodidad. “- Emily G.
3. Necesidad de cancelar planes
” La parte más vergonzosa es tener que cancelar los planes porque no me siento lo suficientemente bien como para salir. Eventualmente te etiquetan como ‘esa persona’ “- Lauren H.
” Es embarazoso para mí tener que cancelar planes sin mucho aviso. ¡El dolor y / o la fatiga son más de lo que puedo soportar algunos días y tengo que cancelar algo que realmente quería hacer! “- Jan SP
4. Overdrive sensorial
” Cuando hay demasiadas personas hablando a la vez o demasiado ruido, mi cabeza entra en una sobrecarga y me estuerzo tanto que podría explotar. Es muy difícil ocultar cómo me afecta “. – Annie T.
” Una cosa que ya no puedo hacer mucho es mirar ‘El precio es correcto’. Hay demasiado ruido y gritos. Y estoy llegando a donde simplemente no puedo verlo como solía hacerlo “. – Terri S.
5. Baja energía
” A veces no tengo suficiente energía para hacer cosas simples como ducharme o preparar la cena para mis hijos o incluso algunos días. No puedo salir de la cama para hacer cosas con mis hijos”. – Skye L.
“La completa falta de energía. Entiendo que es mi fibro. Otros solo ven perezoso “. Michelle P.
” La fatiga. Cuando golpea, tengo que sentarme inmediatamente, independientemente de dónde estoy “. – Lisa T.
6. Fluctuaciones de peso
“Estoy cansado de mi aumento de peso. No puedo sacudirlo y me avergüenza cuando veo personas que me conocían antes “. Leah M.
7. Síntomas gastrointestinales
” Problemas gastrointestinales. Siempre me siento incómodo al contarle a mis médicos sobre mis síntomas gastrointestinales, ya sean náuseas, estreñimiento o diarrea. “- Mattie M.
” Tengo diarrea. Mis problemas estomacales interfieren con mi vida constantemente. Este pasado Día de Acción de Gracias tuve que sentarme y ver a todos comer. Estaba demasiado aterrorizado para comerme a mí mismo debido a la diarrea. Nunca termina. A veces paso días sin comer por eso. “- Melissa G.
” SII [síndrome del intestino irritable] y toda la belleza que conlleva. Tengo que evitar ciertos alimentos solo porque me he vuelto tan sensible a ellos. No solo por los síntomas embarazosos que trae, sino también por calambres, dolores de cabeza y brotes que acompañan a la ingesta de ‘mala comida’ “- Ashley A.
8. Dolor musculoesquelético
” El dolor de espalda y piernas”. No puedo sentarme, pararme o caminar durante más de 30 minutos a la vez. Me estoy moviendo constantemente si estoy de pie o tengo que inclinarme sobre algo. ¡La gente piensa que eres vago, pero mis piernas literalmente quieren rendirse! “- Meena N.
” Me encanta estar activo y visitar lugares como el zoológico o los parques de diversiones con amigos. Pero cuando estoy en un entorno en el que ando mucho, es embarazoso tener que tomar descansos debido a mis rodillas y caderas. A los 23 años, las personas de mi edad pueden molestarse por mi necesidad de dejar de fumar, y algunas veces me preguntan miradas inquisitivas de personas mayores o comentarios como “eres demasiado joven para tener esos dolores”. Por lo general, intento esforzarme tanto como sea posible, pero eso solo empeora el dolor cuando por fin hago una cueva y tomo un descanso “. Shelby C.
9. Erupciones / Colmenas
” La erupción roja que tengo en el cuello desde el aire. En algún momento es solo en un lugar, a veces todo ha terminado. Cuando está en un lugar, la gente a veces piensa que tengo un chupetón. Es algo embarazoso. “- Krystina KF
10. Problemas de equilibrio
” Mi equilibrio. Ha empeorado y me he caído cuando debería haber podido salvarme; la que estaba afuera de la casa de un amigo en su lecho de flores fue la peor ya que se sorprendió (realmente no sé lo que tengo). “- Lisa SEGUNDO.
11. Sensibilidad a los olores
” Mi pobre intolerancia al calor, los olores y el humo. Como estoy apropiadamente vestida y ansiosa por una reunión social, entonces la sensación de incomodidad comienza con sudoración intensa y mareos debido al ‘calor’ que mi cuerpo está percibiendo. Agregue el olor o el humo de una cocina, ya sea en casa o en un restaurante; la barbacoa es mi némesis. Quiero disfrutar, pero mi cuerpo se niega y otros me ven como un aguafiestas o simplemente demasiado exigente “. – Vee Vee Y.
12. Sentirse frío
” Siendo tan frío. Todo el tiempo. Vivo en Texas. Durante el verano, uso suéteres y siempre tengo que llevar una chaqueta donde sea que vaya. Está a más de 100 grados, por lo que cada lugar tiene la AC puesta en marcha y estoy tratando de calentar mis manos lo suficiente como para sentir en ellas “- Kristi R.
13. Twitch musculares y espasmos
” Espasmos. Twitches casi constantes, algunos de los cuales son enormes y la gente te mira con gracia, porque no puedes controlar tu propio cuerpo “. – Rhian S.
” Mis pies y piernas se sacudirán o contraerán. A menudo chillaré o aullaré cuando ocurra porque duele. La gente mira y me hace increíblemente cohibido. No puedo controlarlo. “- Elyse B.
” Los espasmos de espalda al azar que me dejan incapacitado para caminar mientras estoy en el medio de una tienda. No me gusta ser el centro de atención y nada me grita “mírame” como si no pudieras moverte “. Megan M.
” Tengo espasmos musculares al azar. Me hace soltar mucho las cosas “. – Danika S.
14. Tener los “Sniffles”
” La inhalación constante / tos / boca seca causada por mis medicamentos. Realmente incómodo para ciertos lugares y toser y sorber. Cuando mi hermana tuvo a su bebé, yo la sostenía y sorbía, ¡y algunos pensaron que estaba enferma y abrazando a un recién nacido! ¡No! Lo siento, solo mis medicamentos me hacen sonar como eso! “- Garnet D.
15. Sensibilidad al tacto
” Cuando alguien va a tocarme, siempre retrocedo porque sé que va a doler”. – Amanda P.
” Cuando tengo que contarle a la gente, por favor no me abraces ni te despidas porque te duele demasiado”. – Audrey M.
16. Debilidad muscular
” Pérdida de agarre y movimiento en mi mano que resulta en numerosos frascos caídos. Mientras voy de compras, me quedo en el medio llorando de frustración, sin importarme no poder abrir una lata o una botella de bebida “. – Ann W.
” Cuando estoy en una erupción, mis músculos se vuelven rígidos y débiles. Empiezo a caminar raro y se vuelve muy difícil abrir puertas, agacharme, etc. La gente se preocupará mucho y preguntará qué pasa, me acaban de ver y estuve bien un día o hace una hora. Es impactante para ellos y casi imposible de explicar. Entonces boom, un día, una semana. lo que sea más tarde, parezco estar bien. “- Katrina R.
17. Dificultad para hablar
” No poder hablar. Olvidé las palabras, tropecé con ellas, di palabras que no tienen sentido. Lo que es peor es que trabajo con niños y los padres simplemente me miran a veces y me siento tan [tonto] de no ser capaz de transmitir mis pensamientos sin problemas. Simplemente escribir esto me ha llevado 15 minutos porque tuve que volver atrás y reescribir palabras que estaban mal escritas o que no tenían sentido “. – Marissa E.
” Mezclo palabras y sale muy raro! La gente me mira raro porque suena tan [tonto] a veces. Fibro niebla es lo peor! Una vez seguí diciendo patatas en lugar de donas. Tan embarazoso. “- Eloise T.
” Niebla cerebral … cuando no puedo recordar las palabras. Podría estar mirando a algo y no ser capaz de recordar cómo se llama. Está justo ahí en la punta de mi lengua, pero las palabras no llegan “. – Paula D.
18. Incontinencia
” Incontinencia! Es súper vergonzoso, tengo que usar pantyliners todo el tiempo. Y al igual que eso no es lo suficientemente malo, tengo calambres en la vejiga al azar. Como de repente y de la nada, mis calambres en la vejiga y tengo que ir de inmediato. Me ha causado accidentes “. Morgan V.
” De hecho, puedo orinar cada 15 minutos. ¡Pensé que era solo yo, no tenía idea de que era por el fibro! Los viajes por carretera son ab ****! “- Shelby LS
19. Emociones intensificadas
” Con dolor, cuando es realmente malo me enojo, por el dolor, a mí mismo y a los demás. Intento advertir a las personas con las que trabajo en un mal día de dolor, que si lloro o me irrito no son ellos, es el dolor “. – Trish G.
20. Gas
” Gas …” dijo nuff. “- Cindy J.
21. Reaccionando al dolor repentino
” El síntoma más embarazoso es el repentino dolor punzante que me hace cambiar automáticamente de expresión y dejar de hacer lo que sea que haga, ya sea que esté en el trabajo o con mi familia. Cuando eso sucede, todos notan el cambio repentino y luego preguntan qué sucede porque todavía me veo “en forma” o “saludable”. – Katherine L.
“Dolor de disparos espontáneos que a veces es debilitante”. Puedo tener un día perfectamente bueno y un dolor agudo viene de la nada, haciéndome estremecer o incluso gritar de dolor “. – DeAnna AC
” Cuando mi cuerpo se cierra repentinamente, o cuando no puedo levantarme del sofá sin hacer un gruñido embarazoso. A menudo me pregunto si la gente se da cuenta de cuánto esfuerzo me lleva hacer estas cosas “. Terri SA
22. Agotamiento
” El agotamiento. No puedo hacer nada por demasiado tiempo o me canso tanto que me resulta doloroso mantener los ojos abiertos. Tuve que reducir mis horas de regreso al trabajo y apenas lo logro. Necesito dormir la siesta para pasar el día “. – Kirsten MR
” Agotamiento y aislamiento. La fibromialgia me causa una gran fatiga y, a su vez, me recluyo porque me da vergüenza no poder hacer cosas como reunirme con amigos y familiares después de trabajar todo el día “. – Koroleva V.
Para aquellos que no entienden la fibromialgia
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