#possible hEDS

[thergbvision]

Hello Tumblr,

It’s been a while. With this whole tiktok ban happening in the US and everything being so up in the air I decided to return to my roots, as the millennial I am.

How have you been? I’ve been through a lot this year but I’m totally obsessed with The Empyrean series and other romantasy books while I’m going through some things.

I have some health concerns but I see the neurologist at the end of this month and the endocrinologist so, little steps.

My pain today is okay and I’m listening to Fourth Wing for the third time in 2025. I’m a little hyperfixated, have some art!

It’s me as a dragon rider.

As someone with POTS and a lot of hEDS symptoms I’m going through the process to get genetic tested for hEDS which has been a thing but it’s why I connect so much with Violet Sorrengail and am obsessed with The Empyrean series so much. I see me in her, and I see her in me.

Remember, in the words of Rebecca Yarros, “Not all strength is physical”.

Have a good Wednesday everyone!

[problem-project]

Pulled a muscle in my neck by just taking a deep breath 🫠 wtf

[chondrocladia]

starting to get scared that my dream job might never be accessible to me because my health is declining and the time i can spend standing before pain starts radiating from my midback and feeling like i'm about to pass out/collapse is rapidly decreasing and my general joint pain and fatigue is getting worse

all i want is to be a marine biologist and do field work but if i keep getting worse idk if that's gonna be possible

[wizardsaur]

Being whatever brand of hypermobile I am - (diagnosis pending) - my fingers bend backwards. All of them. All the time. At the very last knuckle.

Which isn't the best when I'm trying to do literally anything. But especially when I'm trying to create things like drawing or crochet.

I need ring splints, so affordable recommendations are appreciated.

[straightasmyscoliosis]

My doctor listened to me about hEDs which is intriguing, maybe this time will be different? I’m not sure, but there is hope! Famous dangerous last words “this time will be different-”

Honestly it’s nice to feel one good thing in the ocean that is my mental state. If my mind was a state it’d be total upheaval, though that’s beside the point I suppose

(the picture has little to do with this other than he is my silly blorbo I torture for my own angst porpoises 🐬 , and yes ik that is a dolphin for all u porpoise fans out there 🙄 ( I don’t even know the difference )

[antlered-lycanthrope]

Is someone with hEDS willing to message with me so I can get some advice on how to talk to my doctor abt the possibility of me having it? And what I can do on my own to manage my symptoms? If so can you please reply to this post?

[dandelion-system]

Okay I’m trying. I am.

I’ve got loads of physio stuff I can do go try and strengthen my joints and reduce pain. I’m going to go to the gym on Fridays. I’m taking supplements. I’m going to try acupuncture again. I’m doing positive thinking and visualisation. I’m eating well. I’m pacing as much as my life allows. (If I paced the way I needed to I would do one thing for one or two hours each week and spend the rest of the time resting. Which isn’t feasible considering I have at least three in person lectures a week)

I’m trying everything. I’m even trying reflexology, which I don’t really believe works. I can’t take it anymore. When my life was just college and home, it was fine. But it’s not anymore. Life is opening up for me and not able to take part because I’m in too much stupid pain. I need to not be in pain. I need to be able to walk properly and sit down without my legs going numb. I need to be able to wear a goddamn bra with my shoulder subluxing(I think.) I need to be able to do anything with at least less pain.

I can’t stand this anymore. I just want to live a life and not just be alive in a tiny corner watching it all pass me by.

[strawberrycat18]

Every day I wake up and my body isn’t swollen and everyday I realise that doing anything makes my body swell up for some reason.

Is it caused by pots? Should I keep trying to get my doctors to diagnose me heds?

I don’t know! But anyway, sorry body, for continually doing things I know hurt you.

[rowansrealm]

I finally have an appointment to see a rheumatologist on October 7th. I’m not sure how much they will be able to do but it is at least a step in the right direction.

[barcodeboy]

I get a lot of imposter syndrome regarding the fact that I'm disabled. I don't have any diagnoses or know what's wrong with me (I have some guesses but don't know for sure) I don't need mobility aids at this point. I am able to hide the fact that I'm disabled and I don't need anyone's help.

But I am disabled. And I am in constant pain.

But I do find myself wishing I was 'more' disabled. Because maybe then doctors would take me seriously. Because maybe then my family would take me seriously. I almost wish I would hurry up and lose more mobility so that I could finally get help

[starlightlovesspace]

vent post about talking to my mom about getting mobility aids

bruh, I decided to talk to my mom about asking my doctor for mobilty aids, like a rollator or something due being more indepent and going to comeptions for my school, trying to get a job, etc and she goes 'they should have places where you can sit and you have a note saying where you can rest when needed plus you don't want to walk around with a walker' bitch I just passed out because I couldn't sit anywhere without possibly taking a chair that might be used soon, I think I need something, and I explained that to her and she went 'we'll see' with an attitude saying no

Please note I have POTs and Joint hypermobility and possible hEDs

[poognthebrainbois]

@mg-makintosh: It's chronic pain disorder my dear.

Me: No, I'm a werewolf. Awoo.

[just-a-pot-of-frogs]

Didn’t realize I asked this anonymously oops. Any way an update:

I still don’t know if I’d consider my pain chronic but I do think I have it. It’s manageable and not all day every day. Some pain has an easily identifiable cause like being sore from dance, standing for too long, or a lot stairs. But sometimes it kind of unexplainable like my shoulder randomly being sore or my wrist in so much pain! For no reason (this doesn’t happen often but still sucks) and my knee can be a bit annoying.

And I saw a comment saying that some growing pains could be as sign of something, and I had the WORST growing pains like whatever arm or leg was affected I could barely move.

So I still don’t know if this is technically “enough” pain but I digress.

Anyway I’m going to keep doing more research and maybe I’ll come back and update this again later.

(Could just be nothing or hsd as well)

Hi I saw that you have hEDs, my mom think I may have it and I meet most of the criteria but I don’t have pain. So I think I might just be hyper-mobile.

hyper mobility is a spectrum, some people don't get a lot of pain. for some people it takes a while for that pain to develop, but i hope you avoid it altogether. a lot of my pain comes from injuries and my fibromyalgia. if you are hyper mobile it might still be a good idea to seek a specialist to make sure your connective tissues remain healthy. it's still worth seeing a doctor for. best of luck to you, feel free to reach out at any point

[tekitothemagpie]

Stain the realest character ever.

[kaffkanya]

it makes me sick to my stomach thinking about how spock — touch telepath, by the way — touches jim and accepts his touch so freely, almost without hesitation, but denies touch from others. like, okay, you can argue he has his cool vulcan telepathic shields on all the time, but, surely, surely, he can feel jim's mind buzzing, electric and agitated, brushing against his own. like humans brush hands with the one they like.

and he shouldn't think about it, but maybe he does. maybe in the quietness and stillness of his meditation, he feels the ghost of jim's psychic, burning, tingling. like lips feel hours later after a kiss. the memory of it.

but then, he's sure jim isn't even aware of all this. so he keeps touching him and letting himself be touched. and it could mean nothing.

[tamaharu]

times yoo joonghyuk got a little silly with it:

when kdj was going through it in peaceland/during the 24hr vacation and then he turned and looked and yjh was over there chilling making Delicious Food

when he and hsy scammed anna croft that one time

surely he had to have done at least one silly bit to get out of a movie in the theater master dungeon

when he was bantering with hsy over Space Google Docs during the epilogue

when he was beating up kdj and said it "was for making [him] eat dirt"

when he used kdj as a surfboard