Looking for Friends with Dysautonomia

That's ironic as my degrees are in social and behavioral science (anthropology, sociology, and psychology) with a double major in ethnic studies. Not that I ever used my degrees. I have a fairly small family. I have 3 older brothers, 4 aunts and 4 uncles, and no full blooded cousins (a few half cousins who are all 15+ years older). Did not have grandparents growing up either. It is total BS how they want to say medications "aren't good long term" like nothing is good long term. Being ill and in pain is not good long term. Like what is the alternative? I can't even take NSAIDS as I've now developed ulcers 4x from trying to take them so my only option is literally Tylenol (and cannabis) 🙄 Yes, I am in pain 24/7 though it has been 10 years of it now. Have it managed as much as I'm going to get. I'd say my worst areas are neck/shoulders, mid back, and low back/hips. Pain is like a constant hum in the background. It does stop me from some activities because if I overexert myself it will aggravate my pain. I definitely don't miss days like that with POTS. Some days it was so bad I'd have to crawl the less than 10 ft to the bathroom. I don't get full syncope but that's probably because I get strong pre-syncope warnings. I lose my sense of hearing and my sight when I'm close to passing out. Usually if I sit or lay it will pass. Beta blockers did not work well for my POTS, but my autonomic specialist put me on Florinef and it has made a HUGE difference for me. Reduction in symptoms by like 80-90%. I hope today will be a much better day for you ❤️

I do too. I’m also in FL with temperature dysregulation, neurogenic bladder, severe orthostatic hypotension, and tachycardia.

Yes I do! I cant do really anything without becoming tachycardic

First, the name "Coffee and Dogs made me smile" hehe. 😊 I have neurogenic bladder, gastroparesis, and serious issues with temperature regulation. 🥶🥵 I'm 33 and in FL! 👋