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Ehlers-Danlos Syndrome Online Support Group

I seem to have a little of everything EDS, and have so many questions, any help or comments would really help me


#1

I am hypermobile, although I have incredibly tight fascia, and keep faling and breaking and tearing things off on accident. The home health care nurses think there’s something wrong with my gall bladder and heart, and we know there’s vascular happening. My insides are being attacked badly. I don’t have all the words you guys are using bc my dr diagnosed me and then didn’t fill me in on anything and didn’t help.
I would like to connect with anyone if you would be willing please. I’m alone and overwhelmed. I can make you laugh :slight_smile: I would really like to make friends with you all.


#2

I to have just gotten diagnosed with hypermobile EDS. Have you gotten an ultrasound on your heart or anything like that? I feel exactly like you do alone and very overwhelmed. I have no one to talk to about any of this that understands I feel as if I’m one of those people that are like oh hey look at me I have this I feel like absolute crap blah blah blah. I know people get tired of me stressing how bad I feel all the time I feel like a nuisance to everyone. But it’s nice to know I’m not crazy anymore and there’s other people like me out there some worse some not and some just the same!!