r/elhersdanlos

So I (23f) am currently in a form of hell where I cannot eat anything, cannot drink anything, and cannot stop being nauseous and vomiting. On top of this, I am also getting random intense stomach pains that are nearly paralyzing they hurt so much, as well as a constant headache and brain fog no doubt caused by the constant vomiting.

My question is, did any of you also experience this with your EDS? And how did you get relief? So far I have seen multiple doctors, gotten blood tests, an ultrasound, and today I even got an upper gi scope done and they have found nothing. So please, if you have any advice, I desperately need it.

. End of last year he started with incontinence (he will use the bathroom to pee but he will also just go without realizing he needs to in his pull-up) previously no urinary issues, followed by vomiting and regurgitating food multiple times a day (we now have this more under control) we were told he has inflammation in his stomach entrance exit and inside the stomach itself. He still can not do activities like bouncing constantly at one time or things like jumping jacks bear crawls he will throw up. Most recently his gastro said the entrance to his stomach opens easily. Scans show no gastroperisis at the time of the test. He also has hyper hidrosis of the hands and feet. He is flexible but not grossly so. I (mom) have psoriatic arthritis, great grandma fibromyalgia. I feel like the doctors are not looking at the whole page. I’m frustrated and just want his quality of life to be better. He also has autism

I have a new PT who “specializes” in hEDS and the hyper-mobility spectrum. The website really talked it up.

During session, she mainly does manual release for about 15 minutes, then heat for 10. The release feels good some of the time and is incredibly painful other times. She really pushes on my piriformus and glute muscles. I jerk up and tighten my butt. And the dry needling… I couldn’t handle it.

I have been incredibly inflamed in my SI joints since starting, but I don’t know if it’s the release work or the exercises, or something else.

I’d love to get a sense of what other people do with their therapist so I have something to compare it to, if anyone can share.

I'm posting here as a kind of "last resort" to try and find a friend of mine that I used to talk to on Instagram, but their account got suspended and then deleted. They went by the username "vluvsspongebob" and were somewhat active in the SpongeBob community as well as the Elhers-Danlos (EDS) and POTS community.

Her posts on Instagram consisted of SpongeBob pics and positive affirmations of her journey through said chronic illnesses. If anyone knows anything that can help, please let me know. I really miss my Goofy Goober buddy.

I have terrible slipping rib syndrome, about 2-3 times a day. of course it being out of place creates intense pain throughout my thoracic region, but moving it back into place is terrible for the supporting cartilages.

i just stared working at lowes where i’m picking online orders, most of which include heavy lifting because people would rather have us do it (makes sense). but has just made these issues worse. any suggestions or recommendations for a good brace that would support my ribs? or would that even help?

i’m a full time student working full time, with clinicals also. i’m always strapped for cash so i’d rather get some opinions before making any purchases.

looking for advice from people with similar issues until my next visit to my pcp :)