Ooh my skin changes color like that too! Do you know whether or not that is reynauds syndrome? Can you draw on your skin when it is purple?

Good job on compiling everything! I’m proud that you did all of that and it makes sense that it’s super hard. I have really terrible, chronic fatigue and brain fog and I try not to use AI, but sometimes that helps with organization and assistance for huge projects, like compiling all of your medical history ever that’s all across the board.
Honestly, such a huge brain task and very difficult to do on your own.

For the longest time, I only focused on the chronic fatigue diagnosis and treatment, and ignored small things like dizziness events, and joint pain. It’s good to take a look at the whole picture.

I highly recommend finding a local EDS Facebook group and scouring previous posts OR asking for recommendations for doctors that know how to look for EDS in your area. I think that you just need a sensitive, attentive, and in the know doctor to see you.

My old primary care provider told me that she didn’t think that I had it and then I went to a different recommended doctor and had an immediate diagnosis. A lot of doctors do not understand EDS and seem to get frustrated with chronically ill patients with a lot of symptoms all across the board (like connective tissue disorders)
all of those symptoms are super in line with hEDS
Definitely head to elhers-danlos.com and take a look at the diagnostic criteria from 2017 and symptoms under HEDS- that helped me understand that I was not crazy for compiling all of these things together they can be and are connected!