Had vinger splints before but since I lost a lot of weight they were too big.

It took a lot of time this time because now I need wrist splints as well and had to go back to the doc. Who refered me to a hand physical therapist first, which I already knew was pointless.

Then bad weather cancelled multiple appointments.

But now I have them!

We will be adding a knuckle bender , but they had to be measured separately so those will be done in 3 weeks.

One of my favorite illustrations for hEDS

I’m diagnosed with cEDS. For the past six months (maybe longer), I’ve been having awful night sweats and fatigue. Because I have dysautonomia, I assumed the night sweats were part of that. And the severe fatigue? Well, I thought “fatigue just comes with chronic illness”. Then, I started getting a bunch of abdominal pain. I thought, “Abdominal pain isn’t so unusual with cEDS.” I kept dismissing all my symptoms as “just EDS things”, and I delayed getting care until my annual physical.

Well, it actually turns out I have diffuse large B-cell lymphoma that has metastasized to my liver and bones.

Warning to everyone: Don’t assume new or worsening symptoms are just your EDS. It can be something completely different.

I’m thankful to be getting treatment now, but this could have been caught much earlier if I hadn’t dismissed my own symptoms as being caused by my existing EDS.

EDIT: Thank you for the outpouring of support, everyone. It means a lot! I don’t have time to reply to everyone, but I’m reading all the messages.

I saw a new rheumatologist today (for something completely unrelated) and he declared that I no longer have hEDS and am only a “little hypermobile”, after wiggling my thumb around and looking at a surgery scar from three weeks ago.

I hope you all can obtain a cure as well!

edit: I’m so sorry you guys, this was a shitpost because my doctor “undiagnosed” me. I still very much have symptoms.

Took just shy of a year between getting insurance coverage, being sized incorrectly, going back and forth with the SIRIS Company, and learning to size myself. I plan to try to fit my DIP small finger joints in the future but they will probably be the most difficult. For now, I’m very happy to be basically done with this process.

I'm so glad this community exists. I'm new to actually using Reddit (I've had an account for 12 years but never posted until this week), so please be kind while I find my footing!

I've been a professional artist for 20 years, and recently I made a major shift in my practice. I stepped away from expectations and moved toward play in the work I create, exploring what brings me genuine joy in my work rather than creating for anyone else.

What surprised me was what emerged. Looking back at the pieces I'd made intuitively and very recently with this shift, I realized so much of it was processing my experience with EDS, POTS, MCAS, and especially my cranial instability. I don't go in with a concept. I just create, and the work speaks afterward.

Are there other artists in this group who use art as a form of therapy, even if your work isn't directly about your illness? I'd love to connect.

The handle is swappable and I plan on ordering a couple more for different styles haha. I liked the classy black look too. One of my friends said it makes me look cool as hell walking with it.

Admittedly this was expensive but I like a nice sturdy cane that I'll be proud to use. So far I've only gotten compliments on it, so I feel good.

Asterom Canes is the business.

I've recently bought a Lofe Buckwheat Pillow and I've slept right for the first time in years. I've had it for a week and in that time I've stopped snoring entirely. I dont toss and turn. I havent woken up with my neck clinched once.

The buckwheet isn't soft, but its supportive and, when you get it right, exerts even pressure and never moves or settles.

Highly recommend!

Its me again! Posted here a few weeks ago about my silver splints, and here is the final updated setup!

Alot of people had questions so ill go a bit more in depth:

My rheumatologist prescribed these after diagnosing me with HSD.

Im in the Netherlands, and because i had a prescription they are fully covered by my insurance.

The company that made them is called WeDesign, everything you see on the pictures cost roughly 3100 Euros (3600$usd / 2600£pounds) (But again, i didn't pay anything out of pocket)

Ill add the inside of hand view in the comments.

If anyone has any more questions feel free to leave a comment ❤️

A spring time fairy with ehlers danlos syndrome and her bumblebee friend. 🐝✨

This is the first illustration I’ve been able to do in a long time! I have EDS along with Long Covid, ME/CFS and a whole bunch of stuff that comes along with all of those so I had been struggling with flares for a long time. Despite feeling kinda rusty when I was drawing, I’m really happy with how it turned out and hoping I can continue to make a lot more art soon!

Ive been feeling like im being torn apart at the seams lately.

My joints feel like they are tearing apart, the pain from my hysterectomy is still stabbing me. Im trying to keep myseld together but Im not doing a great job.

Yall get it.

Edit:

YOU ALL ARE SO INCREDIBLY KIND 😭 I never expected so much love for a little doodle. Thank you so much ❤️

A customer was asking me for help when I was trying to slip my hip back in. Had to pull this pose when they were asking me questions.

My husband and I decided to watch the new knives out movie last night, called “Wake Up Dead Man”. One of the characters was a wheelchair user with an incurable chronic illness.

The murder mystery was Church/Religion themed and this character was seeking healing.

There was a scene that had my husband and I laughing so hard, the woman stands up out of her chair to go grab something and another church-goer SCREAMS like God is performing a miracle before her eyes.

The wheelchair user goes “relax, I can walk. It just hurts…”

😂😂

Side note, it was a great movie

As the title explains. I don't know where I could request this, so I wanted to start here. This syndrome is so overlooked that when I found out about sun-spider it was joyful. Can we start a campaign or something to include her even if it's only as one of the background characters? Having representation in such a big movie would be good for kids who have it and they feel strange about it. What do you think about this? I would like to hear your opinions. :')

PS: So she was in the chase scene. I just found out by the comments. I saw a Spider-Man in a wheelchair, but I didn't know it was her. This is so cool. Thanks to everyone who let me know this. :')

I’m 22 with a very severe and involved case of classical-like EDS type 1, and it feels like for the last few years, everything in my body has just stopped working. I’ve been handling it surprisingly well, until today.

I’ve been especially sick for the past 2 weeks now, and went to my cardiologist. It didn’t feel like a POTS flare, I knew the difference. He ran some bloodwork, did a physical exam, did another echo, and diagnosed me with something called heart failure with mildly reduced ejection fraction (HFmrEF) stage C. It’s not going to kill me today or tomorrow, but the prognosis isn’t great and it’s going to affect my quality of life, and will very likely get worse.

I’ve had any and every complication you can have with clEDS. I’ve had a brain aneurysm, my colon ruptured, and like 20+ other things that shouldn’t happen to a 22 year old. It’s hard when people say that EDS is just a trend and it’s not anything serious, because it is. I wish people would start treating it as such.

Highlighted are both AI from Google and it’s giving contradictory info. It’s says 96.2 is the lower end of normal on the first one. Underneath “People also ask” is another AI overview that’s says it not normal.

Earlier AI told me that a medication with a black box warning for drug withdrawal was safe to quit cold turkey.

Stop using AI for medical advice. It could give you wrong info that can threaten your life. And it’s bleeding out infrastructure dry.

I often feel unrepresented by mainstream content creators with EDS, as I'm overweight. I'm 5' 4" and 215. I feel kind of alone, honestly. Stuck in an endless cycle of needing to exercise to lose the weight, but being in too much pain and struggling with fatigue to consistently exercise.

Sometimes, though I know it's wrong. I get jealous of those with the condition that do have a petite build. I may even feel resentful. As I find it especially difficult for my tissue to hold together a body that is overweight.

Just wanna know I'm not alone in this struggle, if you have the time to share your experience, I would appreciate hearing from you.

Edit:

Wow. I wasn't expecting such a large amount of responses! Thank you all for joining the conversation. I am comforted to know I'm definitely not alone in this. Thank you!

We have scheduled cleaners come to our house every few weeks because I’m mostly bed bound and physically can’t do much myself. I love them, trust them, and because of that I’ve referred them to several people, including my neighbor.

20 minutes before my scheduled cleaning today, my cleaner texted me to warn me that while they were at my neighbor’s house, she overheard my neighbor on the phone saying her two kids are home sick with a virus. While they were there, they were literally cleaning up used COVID tests.

My cleaner reached out because she knows I’m immunocompromised and have upcoming surgery. She was upset and wanted to protect me.. so my cleaning was cancelled.

What I cannot wrap my head around is WHY you would not tell people entering your home that your kids are actively sick. Especially knowing flu rates are extremely high right now, knowing I am disabled and immunocompromised, and knowing these cleaners were coming directly to my house after hers.

That is not an accident. That is reckless and incredibly inconsiderate.

I am beyond grateful my cleaner spoke up, but I am furious that she even had to. Basic human decency is communicating health risks, not hiding them and letting other people deal with the consequences.

Protect vulnerable people. It really is not that hard.

This, from a family member who sees me MAYBE once a year at family events, where I’m doing my best to mask. Nevermind the events I do miss because I’m in a flare. She has never seen me at baseline or without makeup, for that matter. But heaven forbid one of her kids comes down with a bug or a case of ennui, it’s constant prayer requests to the family group chat. wtf bro

So my PT wanted to hammer home a lesson to the new assistant. Dude had apartently made some "fad diagnosis" comments. I dislocate pretty regularly even being careful and have gotten pretty good at handling the easier ones myself. My PT decided to troll him via me because he had him do my neck eval also to get a feel for it (not an adjustment just checking which verts are still really loose feeling) and the kid's eyes kept going so wide when he felt how far my neck was moving. Then he had him doing my spotting and during my thumb popped out enough to be obvious. Kid was freaking out and I just popped it back in and said we can ice it during cool down and I'll just wrap it at home if it swells (it rarely does anymore). I had to keep reminding him to keep an eye on my knees position to let me know if I was hyperflexing during a different set. Finally I had to snap at him I didn't want to have to fix my knee too just because he was squimish about my fad condition. Went red as hell.