#possible hEDS

[saranitysstuff]

how would i bring up asking for a referral to get diagnosed with heds to my doctor but in like...a chill way. like as in "my friend told me this" or something...

i don't want my doctor to know i'm suggesting it (not because my doctor wouldn't take me seriously but because my parents wouldn't) and i kinda want to put the "blame" on a fictional person ("oh yeah no someone else told me to get it checked out, i probably don't have it but we should check, haha i know silly idea right"). how do i go about doing that without just outright dismissing the idea altogether and making it sound completely unserious

[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

[crowcussion]

holy hell i got a cane and it’s helping so much!! due to a torn labrum in my hip and whatever is going on with my knee, it can be hard to walk. sometimes so hard i’ll limp. but now with the cane i can walk much much easier!! i even made it look pretty!! might name it, idk

[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 )

[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.

[f3ath3r]

beware playing hello kitty island adventure

[georgeapolloorion]

i gangalang, its me again !

it’s that time of the week where i yap about my chronic illness !

i am in a flare right now (or at least the beginnings of one), and i just feel like i am

dying 😭

like literally all i have the energy for right now is laying in my bed, sprawled out like bingo in that one bluey episode where she’s CONKED out, and watching my stupid little tv shows on repeat

n e ways my favorite TV shows to watch when im feeling like this are Smiling Friends, Bluey, The Simpsons, TLOU, and lowkey whatever random ass shows i find online that look interesting !

anyway … thats it. i feel like a little sack of potatoes just wasting away in my bed and dying slowly but surely

so yeah ! have a good day divas !

(p.s. tell me your favorite shows to watch while in a flare/just in general, i need more things to watch)

[autumnthecozygamer]

Hey there! I'm working hard to raise funds for a custom wheelchair to help manage my fibromyalgia and hypermobility issues, which have been really tough lately. Every donation makes a difference in my life, so I would greatly appreciate it if you could click the link below to donate or share it with others who might help. Thank you so much for your support!

[thergbvision]

I went to the orthopedic surgeon yesterday and was sooo validated when the Doctor wrote “possible Ehlers Danlos” on my file.

He showed my partner how much even my good leg/knee/acl moves and then showed my bad leg which was even looser. He thinks I have a tear in my meniscus, but an MRI will tell more.

I didn’t have to pull out party tricks because he said that I had ligamentous laxity in the beginning of the appointment anyway. On the way out he was like “come on limber”.

I’m excited it gave me reason to get a good knee brace and that’s so very telling to be excited for.

I just feel so validated and I need to stop gaslighting myself. I should have known the doctor could tell just by examine but I was prepared for the “Party Tricks”.

[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.

[f3ath3r]

hahahah ehlers danlos will never let me

[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.