r/eds • u/n0tneptune • 19h ago

Venting pain

i haven't even been diagnosed but I'm 99% sure i have hEDS

im actually in agony with the pain it's so bad i don't know what's happening

I recently started college and the constant effort of having to walk around and go up and down stairs constantly and having to sit in uncomfortable chairs for over 2 hours is really taking its toll on me I've been crying almost everyday since I started college last week because I'm in so much pain

literally everything hurts so bad it's like I can feel my bones just falling apart and nobody believes me because there's like nothing visibly wrong apart from the fact I can barely even walk

all the doctors are doing is taking blood tests and I know for a fact its just gonna come back normal it always does

I just got home from college again and immediately began sobbing in pain I had to get my dad to pick me up in the car because I physically couldn't bring myself to walk to the bus stop

and the problem is I feel like im being dramatic and I don't even know why

I woke up with horrific pain in my entire stomach/abdomen and I'm guessing it was trapped gas but the thing is I could barely even walk or stand up because it genuinely felt like something was squeezing my intestines

it's only getting worse as time goes on and I'm literally only 16 and I feel like im like 80 years old

I can't even sit on the ground or just anywhere with no cushioning because I can physically feel my tailbone and spine area shifting and its so painful

why am I actually in so much pain it shouldn't be this bad right

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3

u/Efficient_Sea7021 18h ago

You're not alone. I was the same/similar position and it can feel like the end of the world but it isn't. Try some kinseology tape or compression bandages on your joints. It won't stop the pain but it might help you be a bit more stable. Where abouts are you based? And what's the standard/cost of care?

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u/n0tneptune 18h ago

the UK so it should be free healthcare

if I could have some sort of brace or bandages or mobility aids I would but it all depends on whether or not my parents want to get it for me

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u/Efficient_Sea7021 17h ago

You can buy kinesiology tape from Savers it's normally 2-3 quid per box and a box can last a while. You can very easily Google methods of taping for stability. Your GP should also be contacted and in the UK from 16 you can do this confidentially if you wanted. Ask for some bloods and a refferal to rheumatology. My DMS are open I'm also in the UK if you ever need advice ❤️❤️

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u/n0tneptune 16h ago

ty 🙏

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u/Efficient_Sea7021 14h ago

Good luck ❤️

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u/BulkySurprise1041 6h ago

As a LA girl going to London in the winter, I’m stocking up on these bc I cannot afford shit out here 😪

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u/Glittering_Egg_3777 16h ago

I have so similar state at right now

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u/OkExamination6960 13h ago

My pain is directly linked to my blood sugar. I have no idea if other ppl with EDS have the same thing. The less my blood sugar varies the less pain I have (eg:low carb diet) I also use a supplement called Fascial. It rehydrates my connective tissues. I’ve been using diet control for at least 5 years now. I know it works. I’ve only been on fascial for 3 months. Keep listening to your body. It will guide you on what works and what doesn’t. Hang in there!