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What's New in hEDS


i have #HEDS and ive been 1 not sleeping well and 2 my back and chest hurt bad whenever i move


Is it only me?

I have #Fibromyalgia , #HEDS , #POTS , and other issues. There are days when I feel amazing! Then, other times, I have almost constant symptoms. I can deal with those mostly.

It's when I have different symptoms that I worry. For example, I'm currently experiencing leg weakness, backache and some abdominal pain. I'm scared it's because of something serious.

Am I the only one who worries that something could be seriously wrong but can't know for sure because all the worrisome symptoms can actually be explained by any of the many diagnosed health issues we have? I never know what symptoms to tell my doctor about. I don't know what's normal and what isn't.

9 reactions 4 comments

I'm new here!

Hi, my name is BendyGrandma. I'm here because I am pending diagnosis of hEDS. I was recently diagnosed with Ankylosing Spondylitis due to being HLA-B27 positive, but I don't have the horrible back pain they speak of. I am extremely hypermobile and have dislocated my knee 7 times as well as my jaw and occasionally sublex both shoulders. #hlab27 #HEDS #MightyTogether #Anxiety

5 reactions 3 comments

Difficulty urinating


I am having difficulty urinating. Somewhere I read those with hEDS have trouble metabolizing water? Has anyone else had this problem?

1 reaction 1 comment

Foot pain and EDS

New fun pain thing:my feet. No idea what changed but no shoe is comfortable anymore. My PT told me a while back that I have EDS feet and would likely need bunion surgery. I had hoped I had longer and really don't want another surgery. Has anyone has this issue or have any advice? #bendybunch #HEDS #footpain

1 comment

I’m new here!

Hi, my name is Scarlett. I'm here because I have an informal diagnosis of hEDS. it could also be marfans, we're not sure yet,but it's very real and I'm in a lot of frequent pain. just trying to understand it all.

I also have a formal diagnosis of #ADHD and #Anxiety

#MightyTogether #HEDS #EhlersDanlosSyndrome #MarfanSyndrome

5 reactions 7 comments

Mobility aid-is it time?

#HEDS #AutonomicDysfunction I find it hard to walk around and spend time with other people in their early 20s I need to sit and people stay with me which makes me feel like i need to push myself harder. I haven’t applied for a disabled parking permit or got a mobility aid because I don’t know when it’s time to get one. Do you get one when your life is heavily impacted and you need something to help you keep your life moving or after rehab?

1 reaction 1 comment