Looking for advice on managing POTS symptoms with EDS

hi, I’m Em and I’m 23. I have hypermobile ehlers danlos syndrome and in October POTS symptoms hit me like a truck. I have an amazing PT who has the trifecta (EDS/POTS/MCAS) and she’s been helping me along the way. I finally have my specialist cardiology appointment (after 2 failed cardiologist attempts) and I’m so nervous, but excited. Anyways, I wanted to ask y’all about your experiences with POTS and what helps you the most? No one else in my life, other than my PT, has EDS, let alone POTS and it’s so scary. Hearing other people’s stories helps so much for a newbie Take care and be well ❤️

Your answer

Messymexi

2y ago

I have eds, pots and gasteroparesis. I wish someone around here would test for MCAS but every doctor I've seen thinks it's a psuedo science. I'd say the worst part I find about having pots and eds is when I'm going up the stairs. All the blood is rushing to my feet? But my leg muscles feel like they're starved for oxygen, this makes them weaker and I risk a sublextion. It also doesn't help that I've fainted a few times and landed on myself a certain way to where I knock ligaments and bone out of place

meatball

2y ago

I have CRPS, ME/CFS & POTS. I really just make sure I'm hydrated with lots of water and salts & I wear compression socks most of the time. I'm not really able to walk or stand much, and it's hard to tell what is from me/cfs exhaustion & what is from my POTS low BP while upright. Sorry I'm not much more help!

tallgirl22

2y ago

I’m super sensitive to medication so the usual POTS remedies didn’t work very well for me. I’m currently doing iv fluids twice a week and it seems to be helping a lot to keep me stable! I had a weird reaction to saline (possible MCAS) so I use Lactated Ringers instead.

Joeybutterfly

2y ago

I have pots and some form of connective tissue problem but unclear if eds or not. I probably got worse after high school symptom wise

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