Join a Community That Understands You

Get answers from those who share your health journey

Left Image 1Middle Image 1Right Image 1

Explore Over 11,000+ Conditions, Medications, and Symptoms.

Get a personalized feed by signing up for free.

avatar

CoffeeAndDogs

Updated 10mo ago

Looking for Friends with Dysautonomia

Anyone else have multiple forms Dysatonomia? Looking to make friends with people who understand. 31 F PNW, USA.

Can you help? connect today

avatar

InconclusiveResults

2y

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! 👋
avatar

CoffeeAndDogs

2y

Haha thanks! I hate coming up with user names. But I figured coffee and dogs is perfection lol. And you poor thing. Temperature dysregulation in Florida sounds like a nightmare!
avatar

EllaMaee

2y

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

CoffeeAndDogs

2y

I have been there, it is really rough!
avatar

Harmony5kw

2y

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

CoffeeAndDogs

2y

I have hypovolemic POTS, autonomic motility disorder, and Fibromyalgia which falls under the bracket of Dysautonomia also. I feel you on the temperature dysregulation. I'm in sunny California and idk how anyone survives in 100 degree heat or snow!
avatar

CoffeeAndDogs

2y

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 ❤️

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

feed-footer-0

Free unlimited access

to all community content

feed-footer-1

Find others who are

medically similar to you

feed-footer-2

Pose questions and join

meaningful discussions

pp-logo

Alike is a transformative platform that goes beyond just bringing together patients; it meticulously connects individuals based on multiple critical factors, such as age, gender, comorbidities, medications, diet, and more, fostering a community of knowledge, support and empathy.

appStoreBtngooglePlayBtn

© 2020-2024 Alike, Inc