Hypermobile Ehlers Danlos - Tumblr Posts
can they invent a mobility aid that helps with the joint pain & also does NOT cause different joint pain in a different area from use
Today's mystery is locating the cause of The Big Nausea. IBS and it's real nausea? CPTSD and it's my nerves? Autism and it's not actually nausea but a secret new body feeling I'm having a hard time labeling? EDS and the nausea is real but it's because my organs are held together with scotch tape? is it because of have eaten before or is it because of haven't eaten again? Could this perhaps be a dire omen? more as the story develops after this commercial break, stay tuned folks!
Mystery Nausea really starting to feel like eat grapes outside in grass...
She had Ehlers Danlos Syndrome.
and I am TIRED of pretending like she didn't! she's who I had as chronic pain representation before I had characters like victor from arcane. SHE was the first time I saw someone with a "normal" body uncontrollably writhe in pain, who could barely walk sometimes because of it, who had their every waking moment effected by it.
"Every cell in my body is torn apart and stitched back together, over and over every day" This line, the delivery of it, the combination of it with everything we've seen of her, I felt it. I have been feeling it. I will continue to feel it every day of my life. Sure she might have fictional illness number 34462398573948 but if that's the closest we can get I'll take it.
Is she a villain who falls under the disability being the motive for villainy trope? Yes. but she is at least sympathetic and they spend enough time with her pain to make it relatable. Do I love that she's a villain? absolutely not, but I didn't really get a choice in picking who I see myself in. They don't make characters with pain like this, at least not enough for me to cherry pick my favorite. Genuinly the only other one I can think of right now is Viktor from arcane, who (spoiler alert) IS ALSO A VILLIAN even if he's better representation / even MORE sympathetic than miss ma'am over here.
The relatability of characters that are stitched/sewn/stapled/ball-jointed etc together as someone with Ehlers Danlos
Every single character of this vein has eds TO ME! and they have been vital representation in a world that likes disabled people more when they're metaphors.
I was wondering if anybody else with eds also found solace in these more literal interpretations of what it means to be physically falling apart at the seams?
Temperature regulation issues suck so much and are so weird because it does not matter how many layers I put on, if the skin is exposed it will be cold. My fingers are like a full 20 degree difference than my wrist that's covered by my jacket. just move the warm blood over there omfg
Hi, my niece, Sienna, is currently fundraising for a service dog due to her multiple disabilities (EDS, POTS, CRPS and more) that limit her mobility and regular everyday function. She is going through the nonprofit organization 4 Paws for Ability. 4 Paws has provided a secure online platform where you can conveniently contribute with options like PayPal, Venmo, and regular credit/debit.
The total cost for a service dog is $20,000 but sadly it is not covered by health insurance. I understand that times are tough for many, and any help you can provide will be deeply appreciated. Additionally, I kindly ask that you share the donation link with your family, friends, and other socials to help us reach a wider audience.
Oh and EDS lmao
Had a chat with my therapist (who has a chronic illness) and she let me know that half the things I was talking about were apparently not normal or FND related things.
So guess who might have POTS…
Okay the possible EDS and POTS are explaining too much.
What do you mean fingers don’t bend like that?
What do you mean average heart rates don’t go from 80 to 130 from standing up?
What do you mean arms don’t turn that far?
What do you mean having to sit down so you don’t fall over is not a normal thing when you’re walking?
I’m having revelations.
Next you’re going to tell me that toes making cracking noises when you wiggle them around a bit isn’t normal. (Side note: can someone please tell me if that’s normal because I genuinely don’t know.)
Any hEDS folk got any tips for subluxation?
I’ve never dislocated anything but just got told that I likely have hEDS and am realising a few things.
Sometimes my joints make a click sounds and hurt like a bitch and feel really weird. Kinda floppy but sometimes stiff depending on where it is. I didn’t even realise subluxation was a thing. Is this subluxation??
Usually I just wiggle the joint around a bit and wait for it to click back. If it’s causing loads of pain then I just ignore it and wait for it to go away, which is usually does when I accidentally move weirdly and then it clicks back where it’s supposed to.
I have a feeling that that’s not how you’re supposed to deal with it but don’t know any alternatives.
Any help?
Thinking about the hippie guy who randomly gave me and my mum a pack of Epsom salts while we were shopping.
Kudos to that guy because a few months later it turns out I likely have h-EDS and Epsom salt apparently helps with that!
I'm just curious
Disabilities: hypermobile EDS, hypermobility spectrum disorder, POTS, ME/CFS, fibromyalgia, functional neurological disorder
Y’all, what’s the benefit of getting a hEDS diagnosis? Every Doc I’ve seen has brought up that I probably have it but none will actually evaluate me for it (based on the criteria to my understanding I definitely fit it) and I keep getting told there’s no point in actually getting the diagnosis so they don’t want to do the evaluation. They’ve offered genetic testing which is nice but that shits expensive and I know technically necessary for the diagnosis but if they won’t even do the in office evaluation what’s the point of it (I mean unless I have one of the other types)
Can I claim it for myself? I understand if not since I’m not formally diagnosed but I’m just curious.
Pixel flag divider requested by @mossfrogandratmushroom !
Disability pride flag
I hope you like it :)
Suggestions, tips, and requests are welcome!!! I don't do any NSFW but I'll create for any fandom. Feel free to use this for something if you want. A like, reblog, or follow if you do would be appreciated!
~Parker
*lays down and back hurts*
*stands up and knees and ankles hurt*
*sit down and hips hurt*
GUYS MY PREGNANCY PILLOW JUST CAME IN AND ITS THE COMFIEST THING EVER
This is actually an EDS thing. EDS happens because of our faulty collagen gene, right? So that means that shit like nails and hair is gonna be weaker and easier to bend/break
Well this sucks. It took a long time to get them to that length and to no longer be see through. I had to be careful not to mess with them so I wouldn't accidentally rip one if it got caught on something. I had to be cautious when handling water for a long period of time. I had to be careful not to bite them while zoning out. I had to be careful when removing dirt from under the nail so I wouldn't accidentally scrape the white part off.
They're just so fragile, and I'm not sure what to do to fix that.
Anyone else have this issue with their nails?
Is it some kind of deficiency? Like iron, protein, or vitamins? Or is this just another Zebra (EDS) thing ?
I'll probably have to cut them all down to match. It feels weird having the one, especially the one in the middle, so short.
Any tips? Tricks? Theories? Ideas?
One weird comorbidity of EDS is actually autism! People with EDS are six or seven times more likely to also have autism!
I have basically no access to care at this point because I live in hell (florida), but would *like* to see someone eventually to look into EDS and comorbidities…wtf do I do? I have no idea how to get anyone to take me seriously and I have an incredibly hard time not completely shutting down during appointments because of medical trauma and being autistic; at this point I’m thinking about making a binder with symptoms (and make a section for each area of my body, past diagnoses, research articles, etc.) but I don’t know. I just want to be taken seriously, and that’s assuming I can even get care. Right now I’m stuck with a fucking dick of an NP just because I need *someone* to prescribe my psych meds. (He also prescribed my T, which he can no longer do at this point because of FL’s new laws…he’s fighting that but I think I just may go off T at this point because I don’t really trust this man at all; I know what I’m doing with my psych meds because I’ve been on them for 6 years but need someone I feel safe with to help with my HRT.)
Getting my official Ehlers-Danlos diagnosis during disability pride month is very fitting
the worst part of my Ehlers Danlos flares (besides the pain, duh) is the brain fog. Like wdym I can’t even do a puzzle because my brain says “no can do buggo, we bein dum dum today”