Hello! New here and don't really know where to start, so perhaps an #introduction might be the thing.

I'm chronically ill, disabled, queer, gamer, artist and knitter. Also very, very, extremely seriously anxious. About everything. For several years now I've mostly been avoiding people, which surprisingly hasn't really helped me be less anxious. So, I must try something new. I was told that this corner of the internet might be the place to try and connect with people again, so, here I am. Hi.

When I first posted this intro I got so many wonderful comments that I got quite overwhelmed and at some point just shut down and couldn't answer any more. And when I recovered a little I thought that answering days later would be too weird. Apparently I'm introverted and socially anxious enough to have a meltdown from simple online interactions too. So, I just wanted to say: sorry for being so awkward and not replying and thank you all very much for your warm welcomes. ❤️

@anhdoilc No apology necessary.

@anhdoilc

I’m happy you’ve found us.

Fellow hermit here 🙂

At some point you’ll meet the first idiot, so make friends with the block and mute buttons. Use them right away if anything anyone said bothers you. With a well tended timeline, this is a wonderful place! 💛

@jinglepostman I know I probably shouldn't apologize for my brain being as it is because I can't really help it, but still I always feel like I have to. And also know that most likely no one thought I was being rude but I've been obsessing over this for 4 weeks now so I just had to get it out 😄

@nellie_m I'm happy too! 😊 So far my timeline consists mostly of art, flowers, cats and puns, but I'll keep what you said in mind.

@anhdoilc I can relate so well to that. Sending a virtual hug!

@jinglepostman 🤗 ❤️

@anhdoilc @AkkalonAS Hi. Don’t be scared here - we might be a little eccentric but we’re definitely a more tolerant & accepting community. So welcome! 🙂

@benjamincox @anhdoilc Thanks so much! I am finding the community really friendly.

@anhdoilc howdy! I am also chronically ill, disabled, gamer, artist, anxious. I used to knit, but gave that up due to unstable joints and arthritis.

Welcome!

@Laurie Thanks! I'm sorry you had to give up knitting. I have hypermobility and pain in my joints as well and I sometimes have to stop knitting for long periods of time. And when I do knit it's quite slow and have to take a lot of breaks. It's probably something I shouldn't do that much either but when have I ever listened to my joints...

@anhdoilc hyper mobility, you say. Ehlers Danlos by any chance? Cuz that's what I'm talking about.

Breaks are good. Pacing is good. :)

@Laurie According to my doctor I don't quite meet the criteria for hEDS so my official diagnosis is hypermobility syndrome, which I've come to view as EDS Lite.😄 Basically I have all the same symptoms but not quite as severely. Where the line is between HMS and EDS is not quite clear to me, but I have to take my doctor's word on it.

@anhdoilc got it. Yeah, in my non-expert opinion, they're the same. We already know there's a huge variance in how EDS manifests, even within the same family.m

In my family, I'm the most severely affected. There are others, some with severe symptoms, others with a few relatively minor but associated symptoms, but given the pattern and their relation to an identified patient (me), it makes it extremely likely they also have it, just nowhere near as severe as me. One is a nurse with extensive connections in the medical community, but cannot find a doc who is familiar enough to diagnose. I am the only one diagnosed.

@Laurie Yeah, same thing with my family. I read a couple of years ago that they're gathering samples from people with hEDS in order to find genetic markers you could use to diagnose it the same way other types of EDS are diagnosed. I don't know where they are with the study at the moment, but diagnosis-wise would be nice to have something more definitive than a doctor's "maybe you do, maybe you don't".

@anhdoilc oh no kidding. Definitive answers for the win.

There is a possibility that there is more than one cause for what is currently called hyper mobility Ehlers Danlos Syndrome. Have you read about alpha tryptasemia? I don't have very good brain power today, so this might be a bit garbled. Long story shortish, alpha tryptasemia causes elevated tryptase in the blood, which can cause EDS, POTS, and MCAD. So that might be one cause.

But there might also be a gene or group of genes that causes it from another angle. For all we know, there could be multiple causes and that's why they haven't narrowed down the specific gene yet. Or so I speculate.

Disclaimer: just a speculation. I am not a researcher or a doctor. Don't take my word for it.

@Laurie That's interesting, hadn't heard of that before! I haven't been keeping up with research into my many conditions, mostly because even though they found something new to explain my symptoms, knowing it doesn't really help me personally if they don't also figure out how to treat it. But yes, even though I'd like to have definitive answers I'm painfully aware that there seldom are any. Complex problems, simple answers and all that.

@anhdoilc don't forget the utter lack of research attention on this. Too obscure, not understood, Doesn't kill many (pain and suffering doesn't count), no dead kids, men aren't affected that much (unlike women, who don't count).

Yeah. I'm going to go watch a happy food show now. :)

@Laurie Oh yeah, it's just a rabbit hole of anger and frustration. Happy shows are a way better activity 😄

@anhdoilc

I’ve been really enjoying the posts you boost. Thank you!

@Tbaker Aww, that's lovely to hear, thank you! 😊