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how to start the process of getting evaluated for hEDS?

hi! i'm 23 and have hyperadregenic POTS as well as IBS-C. i've been doing a lot of research over the last couple years and am seriously wondering if i have undiagnosed hEDS. it apparently runs in my family (i just found this out recently) but isn't officially diagnosed, even though it's blaringly obvious. i have a lot of the symptoms and have since i was very little: easy dislocations, constant subluxations and hyperextension injuries, hypermobility in my fingers, my knees are naturally hyperextended, my skin is very fragile and bruises and scars extremely easily, constant headaches/jawaches/chronic joint pain, chronic fatigue, POTS, GI issues, etc. the only thing that makes me question it is because my skin isn't unnaturally stretchy and not all of my joints are super hypermobile. idk how to even go about asking my doctor-- out of fear that i'll be dismissed. what did you all do when you first suspected it? what was your experience like with getting diagnosed, what helps you to manage (i use that word loosely) symptoms, what specialist(s) do you see? #HEDS #hypermobileehlers-DanlosSyndrome(hEDS) #PosturalOrthostaticTachycardiaSyndrome #hyperadrenergicpots #IrritableBowelSyndromeIBS


Adrenaline #Adrenaline #PosturalOrthostaticTachycardiaSyndrome #surges #hyperadrenergicpots #EhlersDanlosSyndrome

I guess i made a wrong decision in saying yes i get anxiety when my new nurse practitioner asked me. I didn't think after she wouldn't take me seriously. Doesn't everyone in this new age get anxiety? I am not talking about that i know anxiety lady. I'm tired of my body constantly telling me to go go go GOOOOO. even when i sleep. When im sitting eating. When im smoking ganga. It happens always. I've always had it. I am a forever energizer bunny that never stops. Never been diagnosed of course, who's going to believe an unsure 25 year old woman? Not many i know that much. It's getting to the point where i feel others are getting annoyed of me talking about myself but like no one gets it. They just think im a weirdo, even my family. Idk its easy to give up when no one gets it and like is it going to keep getting worse? Am i ever going to be in a calm state? Will my body ever be calm? I thought when i was younger i would grow out of this "hyperness" its just honestly so tiring at times when other times it helps me get shit done. Back to my nurse practitioner story before i interrupted myself. I told her i might have POTS and she shrugged it off going oh yeahhh a lot of people get that and it comes akd goes. She didn't even want to do a test. Made it seem unimportant. Just like everyone else and oh i had to pay her for that? I just want some understanding in how my own body works. Some people might think i am a hypochondriac but i just go to things that might fit what's up with my body. I know my body shouldn't always be in this state and yet it always is. Yes i can do party tricks. Yes i pass the beighton test. But it is a matter of someone believing in me and actually figuring it out. Which i don't have the money to even figure out if i do have well something i guess. But what importance is it if everyone is dealing with their own issues.


I’ve recently noticed that the longer I’m standing my hr and Bp rises.

There so many YouTube videos and forum for pots where the Bp is low. That not my situation any time that I’m sitting up or standing my Bp goes up. The longer I’m on my feet I become short of breath and totally exhausted. However, there are times that I can tip toe around my house and there not much difference. My heart rate will go up a little but it sometimes recover and normalize within seconds, and it take a while before my heart rate gets crazy ( those are my great days). Is this normal for the symptoms to be super manageable at home but the moment and I mean every moment I’m up more than I say 20 min standing constantly the issues begin.


Anyone else with hyperpots often have invisible facial flushing?

What I mean by that is just that your face will feel MUCH warmer than the rest of your body combined, but there’s just no actual visible redness of the face. I experience this a lot, and would love to hear any tips you guys might have on how to deal. Also, idk if this happens to anyone else, but when my face gets to that point of hotness I get crazy irritable. #AutonomicDysfunction #Dysautonomia #hyperPOTS


Those of you with hyperpots, do you have your bed raised, and if so does it seem to help?

My doctor told me that every time I lay down flat, I’m just making it harder for myself to get up. So I have bed risers raising the top portion of my bed, but I feel as if I’ve had more blood pooling in my legs since raising my bed.
#hyperPOTS #hyperadrenergicpots #hyperadrenergic #Dysautonomia #AutonomicDysfunction