u/NocturnalMystic96

Anyone else learn what EDS is and start seeking treatment/help and start to realize they may have POTS or some form of dysautonomia?

What have your experience been like?

I dont pass out but I "go dark" my vision goes black and I get wobbly/shakey, I have been doing that since high school. It happens when I stand, stretch, or yawn too hard. I spend some days so dizzy with the kaleidoscope in the lower part of my eyes. My fitbit registers that my heart rate jumps 25-30 points when I do the going darks or when I just walk to my kitchen for water. I am not unhealthy or overweight, I was in the military for 8 years.

Does anyone have a good smart watch they use to monitor heart rate and sleep?

When I first learned what hEDS was and how all my symptoms finally made sense and I wasnt alone, I felt so happy and relieved. Sadly now I am noticing my symptoms are worse and I feel depressed. Like the weight of the fact there is no cure and that I will likely be in pain forever.

I complained to my sibling about it and they asked "are you sure you arent just overthinking it and making it worse?" Which just reminded me of all the drs who told me it was in my head and now I just feel like I am over reacting...

Did anyone else feel that way? Or just how did you guys deal with the initial processes?

Hello, I am fairly new to learning about EDS, I have a lot of the typical things that would lead to a diagnosis of heds. I finally saw my doctor with my whole list of things that lead me to ask about EDS and he said he is going to send me to genetic testing.

What has been yalls experience with it? I have hypermobile family on my mom's side but all died or hate Dr's so wont go to see if they have it.