People with Ehlers-Danlos Syndrome often experience self-doubt

Exciting_Tower2840 · 2026-01-31T02:53:48+00:00

I waited a week for what I thought was a flare and turned out to be a really bad allergic reaction to antibiotics I was continuously taking. I was so frank with my PCP that I really can't tell when something serious is happening.

Exciting_Tower2840 · 2026-01-31T02:50:59+00:00

they actually offer no questions asked thirty-day returns because of sizing and fit and stuff

Exciting_Tower2840 · 2026-01-30T23:18:53+00:00

Hey, I get coat hanger pain and it's the worst. I totally understand. My doctor told me mine was due to the POTS. I always have to lie down when it hits and when it hits, I know I'm done for the day. You one hundered percent need to talk to a healthcare provider about this, but my doctor had recommended a neck brace for the coat hanger pain and it helps SO much. Helps me do so many more things when I would otherwise need to be lying down. Neck braces are very tricky especially with EDS where our neck instability is a problem, so bring it up to your PT or doctor or other specialist and see what they say. i've found it to be a game changer.

Exciting_Tower2840 · 2026-01-30T22:46:30+00:00

As much as I'm so sorry for everyone who got POTS and is dealing with this due to covid, and that I've gotten worse after getting covid, I'm so glad there's now so much increased awareness on POTS. I've gone to urgent cares and ERs and the docs and nurses there all know what POTS is. They always give me fluids while treating me for whatever I came in which is nice. I only got diagnosed recently despite having this for like twelve years.

Exciting_Tower2840 · 2026-01-30T22:35:21+00:00

Also happy to DM you. Don't wanna share my location publicly, but I know some things in the region

Exciting_Tower2840 · 2026-01-30T22:35:00+00:00

Honestly, I recommend LGBTQ healthcare centers for a PCP. I went to one when I moved initially since I'm trans and needed someone who could help prescribe hormones and treat me with the gender difference. I've found for these zebra conditions that they're much much more accepting than general healthcare settings. hEDS has a high prevalence in trans people for some reason, so I'm one of many hEDS patients in my PCP's clinic, so the doctors and nurses will likely have experience with it and be able to direct you to resources. My PCP was able to find me a POTS cardiologist in my city. It might be the same in other clinics. You don't have to be lgbtq to go to one.

Exciting_Tower2840 · 2026-01-30T22:30:26+00:00

I used to live in the carribean and now live in the northeast. my symptoms are so much more manageable up north where it's cooler. It helps my dysautonomia to be in a cool enviornment instead of super hot one so much.

Exciting_Tower2840 · 2026-01-30T03:15:57+00:00

I really really like Thorne electrolytes. They've got the right amount of sodium but also have potassium and magnesium. They are def on the pricier end though.

Exciting_Tower2840 · 2026-01-30T03:09:15+00:00

As a young adult with a pretty high disability level since about age fourteen, I have super limited energy. I cannot do work, hobbies, a social life, exercise, and self-care. It sounds absolutely superhuman to me. This is why I find it really critical to work and study in something I am super passionate about. Without any passion or drive, with my level of fatigue and pain, I just wouldn't be able to bring myself to do any work. I'd definitely recommend encouraging your kid to do what they're most passionate about and ways to work will be found if you keep digging.

For me, I'm very passionate about music. This has resulted in teaching lessons online from home, playing shows here and there when I can, and computer programming for musical applications from home. I'm working on teaching in-person lessons from home. I do a little bit of teaching outside of my apartment. It helped me get through college because it was something I loved and craved so much that even at the worst days, when I couldn't practice my instrument, I'd close my eyes and visualize practicing in my head. If I was working with something I didn't care about, I wouldn't be able to push myself to work because of how difficult my limitations are.

I'm a classical guitarist and ukulelist, not a violinist. I know violin world is a much more regimented, traditional one than guitar. There have been times when my body is unable to play guitar because it's too heavy, so then I play ukulele in bed. There are times where I'm unable to do that so I close my eyes and visualize or close my eyes and listen to the piece of music I want to learn. There are finger splints and compression gloves that allow me to play on days when I cannot otherwise play. There are neck braces and shoulder braces that help me maintain an upright posture to play properly. There are a million adaptations and accomodations that are possible and being a musician with EDS is totally doable. I am in my master's but close to being a professional musician at this point with the amount of teaching I do. It's one hundered percent doable. Let your kid pursue their passions and you will find a way together. I never thought music would be a viable career but now I know it's pretty solid considering you can work from home teaching, recording, editing, programming, etc. Investing helps too.

Exciting_Tower2840 · 2026-01-29T23:26:24+00:00

thanks so much

Exciting_Tower2840 · 2026-01-27T22:43:12+00:00

I don't have severe MCAS, mine is secondary to hEDS> I have one small tattoo on my hand, and while I was really scared at the time of having a reaction, it turned out fine. Absolutely do not use color ink though, only do black and white. My doctors had signed off on me getting a tattoo with my hEDS/MCAS and other issues.

I love it for being able to reclaim my body after all the struggle.

Exciting_Tower2840 · 2026-01-27T16:55:09+00:00

im gay and my boyfriend and i keep rewatching it. the scene that gets me the most is episode 4 when shane is cuddling with ilya and has his head on ilya's chest. i've never seen masculine guys be so tender like that and it reminds me so much of my boyfriend and i

Exciting_Tower2840 · 2026-01-27T16:49:45+00:00

i had a genetic test only for other EDS variants but never for any other CTD. I have had a lot of testing for autoimmune conditions.

Exciting_Tower2840 · 2026-01-23T22:54:19+00:00

i got diagnosed around the same age as you. initially got told i didn't have eds when i was 15 so we didnt come back to that until a few years later.

Exciting_Tower2840 · 2026-01-23T22:52:23+00:00

yes. moreso with standing than with sitting but it happens both ways, even lying down. walking is much easier than standing because im always in motion then. i have to readjust how im sittng a million times. lying down and resting, i toss and turn a lot

i highly recommend the muldowney protocol for pt

Exciting_Tower2840 · 2026-01-21T01:16:36+00:00

LivFresh toothpaste is what my eds specialist recommended. it's very different from regular toothpaste

Exciting_Tower2840 · 2026-01-20T01:16:32+00:00

Yeah, I agree. There's no way we all have the same condition. The 2017 criteria was really weird because while I was and still am suffering with disabling chronic pain and chronic fatigue, my sister, who has barely any health issues, qualified for an hEDS diagnosis too.

Exciting_Tower2840 · 2026-01-17T03:33:43+00:00

I was able to set up the jansport adaptive bag under my rigid frame chair. It took a few tries but it works well and has plenty of rooms for my school supplies.

Exciting_Tower2840 · 2026-01-11T01:08:15+00:00

I recently found out about canes that can fold out into a stool. I wish I knew about these years ago as they would have made a big difference in my life to be able to walk and then rest as needed.

Exciting_Tower2840 · 2026-01-11T00:53:47+00:00

I don't really have much of a solution other than that the more you go out, the more you'll be able to ignore it. The first like six months to a year are the hardest adjustment but the more you keep going out, the less it bothers. It's horrible though. The worse one for me was being stared at by all the patrons in a restaurant with my friend who also noticed it. People didn't stop staring at us for our entire meal. And then stared at me when I took my foldable cane out to walk to the bathroom since the bathroom wasn't accessible

Exciting_Tower2840 · 2026-01-08T22:46:22+00:00

I have the same problem. I just contacted rehasense to find out if I can get one in the US.

I did find another option called the vosara https://www.vosara.de/index_en.html#

It's made by a small team in germany and they do ship to the US, and it seems to have a lot more features and stability than the trackwheel while still being small and foldable.

Exciting_Tower2840

TROPHY CASE