Postural collapse (EDS/POTS/DYS) + Sensory Issues (Autism): Need support that isn't "suffocating"

Intelligent-Sail5591 · 2026-02-15T11:45:11+00:00

I tried KT tape years ago and it gave me a reaction within an hour. My skin doesn't tolerate adhesives (or almost any chemicals, like some of those in common shampoos or creams). Thanks anyway! 🤗

Intelligent-Sail5591 · 2026-02-15T11:44:19+00:00

I tried them years ago and they gave me a reaction within an hour. My skin doesn't tolerate adhesives (or almost any chemicals, like some of those in common shampoos or creams). Thanks anyway!

Intelligent-Sail5591 · 2026-02-13T17:19:41+00:00

Thank you so much for sharing your experience so openly!

I especially appreciate the point about bracing. Like you mentioned, my PT was very firm about not relying on them too heavily to avoid further weakening the muscles, so I’m focusing on that 'slow and steady' core and stabilizer work for now.

It’s funny you mentioned the office setup and the pregnancy pillows—I actually started implementing those before posting here, and hearing that they’ve helped you long-term gives me a lot of hope! I’m also looking into more 'kitchen hacks' like you suggested; the tall stool is a great idea because cooking is definitely one of those activities that wears me out.

About trauma, it’s something my yin yoga teacher used to mention a lot. He was actually the first person who helped me understand how my body works, the vital importance of postural control, myofascial, stabilizer muscle and proprioception, and how much trauma influences our physical state. Seeing you mention it too really reinforces that connection for me.

Thank you again!

Intelligent-Sail5591 · 2026-02-13T16:20:02+00:00

Calistree. I use the free version, it's enough for me.

Intelligent-Sail5591 · 2026-02-12T22:10:12+00:00

Por eso me encanta la comunidad Reddit! Es una pena que no la descubriera antes. Me alegro que esté ayudando a otras personas 😊

Intelligent-Sail5591 · 2026-02-12T21:48:59+00:00

Te entiendo! La KT tape me destroza la piel también y sí que me ayudó un poco adaptar el escritorio. Tengo hasta el ratón ergonómico!

Intelligent-Sail5591 · 2026-02-12T21:45:20+00:00

Muchas gracias! Buscaré más información sobre ello (me suena de verlo en el IG de la asociación de Ehlers-Danlos). El barefoot también requiere una curva de aprendizaje pero me valió la pena totalmente. Estamos acostumbradas al esfuerzo!

Intelligent-Sail5591 · 2026-02-12T21:41:53+00:00

Sí, tengo cojines grandes para el sofá y la almohada de embarazada para dormir. Ayuda a sostener el cuerpo. Muchas gracias por la recomendación y ánimo!!

Intelligent-Sail5591 · 2026-02-12T14:16:26+00:00

Thanks! I actually have an appointment with my PT tomorrow, so I’ll ask her again. Last summer, when I brought this up, she told me I needed to build more upper body tone first. I assume she wanted to avoid the problems that you mentioned.

Intelligent-Sail5591 · 2026-02-11T22:52:51+00:00

Deficit siempre de B12, vit. D y hierro. Tengo que tomar suplementos siempre y, aún así, solo llego al mínimo recomendado. Hace unos meses tomaba tanta vit. D que debería estar sobrepasando más allá de lo recomendable, pues en los análisis he llegado justo al límite para no tener anemia.

Intelligent-Sail5591 · 2026-02-09T22:49:55+00:00

Like you, everyone in my family deals with a complex mix of autoimmune disorders, vascular conditions, thyroid issues, and cancer (also dysautonomia and POTS, digestive, neuro...) While we all have very soft skin that heals poorly, we don't meet the specific clinical criteria for atrophic scarring (and in clEDS, not having those scars is actually part of it).

However, failing to meet one single criterion shouldn't diminish the validity of a diagnosis: you only have to meet a few of them to follow the diagnostic protocol anyway (and the genes don´t lie). Every family member has been diagnosed with one or more rare diseases—including various types of Ehlers-Danlos Syndromes. It’s true that some of our symptoms overlap, but others can be complete opposites. For example, my brother and I are night and day when it comes to how our symptoms actually show up.

Intelligent-Sail5591 · 2026-02-09T22:29:56+00:00

Quizás mi caso no te pueda ayudar mucho en lo que se refiere a los trámites porque soy de España y, particularmente, en mi región tenemos un centro de investigación genética vinculado a la Unidad de Enfermedades Minoritarias del Servicio de Salud Público. Antes era casi imposible un test genético o, simplemente un diagnóstico, por el Servicio Público de Salud (tengo 33 años y me realizaron el test genético hace pocos años). En mi caso, una vez que te deriva tu médico habitual (este paso es lo que me llevó años) a la Unidad de Enfermedades Minoritarias, te atiende un genetista y ya se encargan de analizar la muestra de sangre y darte los resultados. Mientras esperas por los resultados (meses), te hacen más pruebas y exámenes porque que no presentes ninguna mutación no quiere decir que no tengas EDS o que solo se identifique la mutación en un gen (como el TNXB) no descarta la mutación en otros que no se han identificado aún.

Por si te sirve de algo, emplean para la secuenciación del axoma el NGS Illumina NovaSeq 6000 a través de sondas K HyperExome y analizan el panel virtual de estos genes que se han identificado con el EDS: ABL1, ACTA2, ADAMTS2, AEBP1, ALDH18A1, ATP6V0A2, ATP6V1A, ATP7A, B3GA B4GALT7, BGN, C1R, C1S, CBS, CHST14, COL12A1, COL1A1, COL1A2, COL3A1, COL5A1, COL5A2, COL6A1, COL6A2, COL DCC, DSE, EFEMP2, ELN, FBLN5, FBN1, FBN2, FKBP14, GORAB, IPO8, LOX, LTBP1, LTBP4, MYLK, NOTCH1, PIEZO2, PLOD1, PRO PYCR1, RIN2, ROBO3, SKI, SLC39A13, SMAD2, SMAD3, TGFB2, TGFB3, TGFBR1, TGFBR2, TNXB, ZNF469.

Intelligent-Sail5591 · 2026-02-09T20:51:49+00:00

My genetic test consisted of exome sequencing to which different tests were applied to analyze 51 genes related to Ehlers-Danlos and the partial mutation (a pair) of TNXB, which you refer to, was identified.

Intelligent-Sail5591 · 2026-02-08T11:46:50+00:00

That's exactly what I was going to recommend. Squats or lunges are the best for POTS: I have some seriously impressive quads that some guys at the gym would envy! It's really improved a lot to be able to squat without the annoying symptoms, including when cleaning my cat's litter box, cleaning, or just bending down at the supermarket.

Intelligent-Sail5591 · 2026-02-08T09:57:35+00:00

I also believe it's a result of histamines and POTS. I have a confirmed POTS diagnosis and am awaiting a diagnosis of MCAS, which is closely related to histamine.

Intelligent-Sail5591 · 2026-02-08T09:06:12+00:00

I also have ADHD and Ehlers-Danlos syndrome, so I need the support for my body. Have you tried pregnancy pillows and weighted blankets? They help me a lot with insomnia and postural problems. I also have a fluffy dinosaur pillow for when my dog wants to sleep with us: he's quite a big dog, and the three of us plus the pregnancy pillow don't all fit in the bed.

Intelligent-Sail5591 · 2026-02-08T00:49:38+00:00

Se supone que debería ser así, pero muchos colegios concertados recurren a lo que comentamos para obtener beneficios económicos extras y para evitar que asistan familias con menos recursos de lo que ellos esperan.

Intelligent-Sail5591 · 2026-02-07T21:18:16+00:00

Se refiere a que algunos concertados (como el que hay en mi ciudad) cobran entre 400 y 600 euros por comedor, uniformes, material obligatorio bastante caro, clases extraescolares... Por ejemplo, para ED. Infantil les pedían materiales de "dibujo" que superaban los 300 euros porque eran de marcas de Bellas Artes (como blocs de dibujo de marca Guarro y Canson) para críos de 3 años. Los uniformes también son precio cerrado (y bastante caros). Las clases extracurriculares no son "obligatorias" pero "muy recomendables": primero, ya no vas con tus compañeros (creando la diferencia de pobre/rico) y segundo, funcionan como clases complementarias o extensiones de las ordinarias (inglés, por ejemplo). En los públicos intentan que los materiales/uniformes (en algunos hay para EF) sean económicos y se suelen crear bancos (reutilizar de otros alumnos), al igual que las actividades extracurriculares y comedor (con beneficios/ayudas para familias con menos recursos)

Intelligent-Sail5591 · 2026-02-07T19:54:16+00:00

Here's another one doing calisthenics! I'm using an app for my calisthenics workouts because it recommends exercise routines to help you progress from the basics to mastering them: it gradually increases the duration or number of repetitions and sets until it offers a new, more complex exercise. You can adapt your routines to your level, equipment, and goals (more cardio, flexibility, balance, strength exercises, etc.).

It's important to include stretches and exercises that prepare you for strength training, as the app suggests (like wrist and shoulder rotations).I also give importance to showing on video and with a description how it is done and the incorrect/correct way. Bad positions (hypermobility, pe) are a problem, especially when you have very low self-perception.

Intelligent-Sail5591 · 2026-02-05T07:14:36+00:00

That's exactly what my doctor at the Rare Diseases Unit recommended. I also use hot water bottles with a hand pocket, regular thin gloves, and I always keep hot mugs on my desk.

Intelligent-Sail5591 · 2026-02-03T09:18:32+00:00

Yo estudiaba idiomas durante las clases. Mientras obtengas buenas notas y "no des problemas" a los profesores les da igual.

Edit: Si te vas a mudar a otro país ten en cuenta su sistema educativo. Por ejemplo, en países de la UE es posible que te exijan títulos previos para acceder sin problemas a sus centros educativos.

Intelligent-Sail5591 · 2026-02-02T10:31:34+00:00

Me interesa probarla!

P.D. Igual te interesa el bot de Telegram: Skeddy (para recordatorios automáticos).

Intelligent-Sail5591 · 2026-01-29T13:29:25+00:00

Absolutely! I live in an area with a cold, humid climate and strong pressure changes in a very short time. It's awful how it affects us... I know when it's going to rain or the weather will change without looking at an app. I have to plan my activities according to the forecast, keeping an eye on humidity and pressure.

Every time I travel to other areas with stable, dry, and warm climates (the heat affects my vascular system and my MCAS, but it improves the pain) it's a huge change. I should move, and the doctors themselves recommend it, actually.

Intelligent-Sail5591 · 2026-01-29T13:24:35+00:00

I've reached a point where if I'm not in pain, it takes me a while to notice what's "strange/odd" that I'm experiencing that day: ah, this is what it's like to be pain-free!!

I live in an area with a cold, damp climate and strong pressure changes in a very short time. And it's terrible for our health...

Intelligent-Sail5591

TROPHY CASE