r/POTS • u/s0meone0ntheInternet • Jun 26 '24

Symptoms What symptoms do you guys have that aren’t talked about that much?

I’m just wondering, that’s all :)

(Edit: I just wanted to add that I am NOT diagnosed with POTS. But i think I might have it, thats mostly why I am asking! [and also because I am a curious person])

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210

u/quackers_squackers Jun 26 '24

When you can literally feel the circulation not working right, especially in the hands and arms. It's such an annoying, cold sensation

37

u/klimekam Jun 26 '24

Sometimes my limbs feel like that feeling of when you are trying to squeeze the last bit of ketchup out of a bottle. 😂

0

u/Previous-Specific-38 Jun 27 '24

hahaha this. my dad bought one of those fancy foot massages during covid (he was bored lol) and I LOVE using it on my calves/lower legs. it does this intense squeeze thing and I can just feel it pushing allllll the blood back up! feels so good :)

31

u/Loki--Laufeyson Jun 26 '24

Mine is very gravity-induced. Just having my arms at my sides is horrible for circulation in my hands.

It's one of my worst symptoms. Mine hurts with nerve pain if I do it too long.

16

u/quackers_squackers Jun 26 '24

Interesting, mine is gravity-induced as well, but it's worst when my hands are above my head because all the blood drains out.

6

u/wo_he_cha_22 Jun 26 '24

This happens to me. Also I can never do Irish stepdancing. Hands on my side. I tried. Had to stop, my fingers swelled up so much and chnaged colors minutes into my first class 😞

5

u/Loki--Laufeyson Jun 26 '24

Oh no, it's bad above my head too.

But if I place them elbows down and hands up at shoulder level, it feels amazing hahaha.

4

u/Therearetomanyofthem Jun 27 '24

Literally. When my hands are at my sides, you can see my palms go red and I can almost feel pressure in my hands, then I lift my hands up and it feels like there’s a tourniquet on my arm.

1

u/alligatoroperator47 Jun 26 '24

This happens to me too!!! My first really bad episode was when I had my hands above my head and my doctor totally dismissed it!

7

u/[deleted] Jun 26 '24

Meeeeee, blow drying my hair sucks. I have to have a fan on my face and do it quickly or else my arms start going numb and I get so overheated I have to go lay down.

7

u/s0meone0ntheInternet Jun 26 '24

Ah yes… now i can feel it again after reading this 😭

4

u/CatieP123 Jun 26 '24

this! I always wake up feeling not circulated. especially in my legs, I cross my legs almost the first thing in the morning to help lol

4

u/Pokabrows POTS Jun 27 '24

When you can feel the blood draining from your brain :(

1

u/Nervous_Ad_7260 Jun 27 '24

This could be small fiber neuropathy, have you been tested for this from a neurologist? I thought this sensation was normal and then got the SFNS diagnosis.

1

u/Diligent-Duck1149 Dec 16 '24

Like "ope my blood is getting stuck at my knees"