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Difficulty urinating

#HEDS

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
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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
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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

(edited)
5 reactions 7 comments
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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
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From one flare right into another

Several days ago I did something that caused a pinched nerve in my neck/shoulder and all the way down my arm. The pain is horrendous and just when I think it’s getting better it flares up again. It’s always something and it’s incredibly frustrating. You’d think I’d be use to it by now but nope. I’d like a refund on this body, it’s defective. #ChronicPain #EhlersDanlosSyndrome #HEDS #Spoonie #POTS

27 reactions 7 comments
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Why is it so hard to tell our loved ones about our diagnosis?

Why is it so hard to tell our loved ones about our diagnosis. For some reason, it makes me feel as if I am letting them down. I am crushing their dream that one day I will get better. I don’t want to further burden them with knowing everything that is difficult about being my friend will never change. I am taking away their hope that I can go back to the old me. The funny thing is, I was never okay. I never have felt “normal”. I have always struggled to show up. I have always had this condition, just now I feel validated for how hard I struggle to be “normal”. It’s hard to explain that I will only get worse. There will be more things I can’t do. More obvious signs that I’m not okay. It’s hard to tell a loved one a diagnosis because you become the bad guy. Even though you’re the one struggling, you’re now obligated to make the person not feel bad for your diagnosis. To ensure them that ‘it’s okay, I’m fine’, the unofficial moto for the chronically ill.

For some reason, it’s hard for me to tell my loved ones about my diagnosis because I don’t want to hear ‘it’ll get better’ or ‘have you thought about…’. Trying to tell people and the look they give you, as if you have told them, it’s contagious and they might catch it. Trying to explain that it’s genetic, but just getting blank stares. Allowing them the time to grieve my diagnosis, one that I haven’t even fully grieved. Feeling the shift in the air, as if the person they have always known is gone and a stranger is standing in front of them. The tip toeing around certain subjects. Or the looks they give you when someone else is complaining that they feel bad, their eyes almost saying ‘you are so much more broken’. The deep breaths given when explaining you’re just too weak or tired to attend.

It’s hard to tell my loved ones about my diagnosis because I’m worried they will leave me. I’m worried that they’ve held on to the hope that dealing with me and my issues has an end. I’ve shattered their hope that I’ll bounce back. Shattered the idea that they can no longer trust the way I look, because my condition is invisible.

It’s hard to tell my loved ones about my diagnosis because I’m worried they won’t trust me anymore. I’m worried they won’t trust me when I tell them ‘Today’s a good day’ or ‘I promise, I will come’. I’m worried that my word will just turn into background noise, and they will start to make decisions for me. I’m worried opportunities will be taken away from me because they don’t trust me to know what I’m capable of.

It’s hard to tell my loved ones about my diagnosis because it’s hard for me to acknowledge my diagnosis. It’s hard for me to allow myself to be vulnerable when the professionals didn’t believe me. It’s hard for me to share my diagnosis because so much has changed already and the thought of losing people is harder than feeling alone in the knowledge of my diagnosis. It’s hard for me to share my diagnosis because at the end of the day, it doesn’t change that not matter the reaction or loss, my diagnosis is here to stay.

#EDS #HEDS #invisableillness #ChronicIllness

15 reactions 3 comments
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Undiagnosed and having a rough few days

Not unlike others with undiagnosed chronic illness, I'm feeling a bit piled upon. Every day has its challenges simply by existing. I HURT. Everywhere. Being in pain that you just can't relieve is exhausting, even when you aren't also fatigued. And since I look healthy and am a relatively upbeat person, people don't get it and can't understand when its finally too much and you just fall apart emotionally. I know many of you can relate because I read these same things all the time.

I'm not so patiently awaiting the results of a whole genome sequencing, a visit with a rheumatologist, and a neurologist. So far, the big contenders are hypophosphatasia, hEDS, and MS. Those all have differential diagnoses to weed through, but I just want to know what is making me have so many struggles so I can come to grips with things and find ways to cope so I can more fully enjoy my life. #Undiagnosed #Hypophosphatasia #MultipleSclerosis #EhlersDanlos #HEDS #ChronicPain #Fatigue #ADHD #RareDisease #Waiting

24 reactions 8 comments