Got diagnosed after years of testing and being ignored, now I don’t know where to start
I’m a 26 year old AFAB (they/them) person and today I was diagnosed with hEDS and POTS.
I bawled my eyes out at the doctor appointment because after years of tests and doctor visits and ER/urgent care scares; I finally feel like I’m not the problem. For my whole life i’ve just been convinced that I am a lazy piece of sh\*\* and that i’m just making everything up bc i’m a horrible person (I have OCD and depression, which I now think might be because of being undiagnosed for so long).
I was told my test were “normal” and that I was “healthy” bc I’m young and it was all “growing pains” and I just needed to loose weight (i’m 5’6 and 180lbs). As a child I was praised for being flexible and did dance and contortionism competitively until I dislocated my knee when I was 14 years old. I’ve suffered from chronic pain, knee and ankle injuries, chronic fatigue, nausea and other symptoms my whole life. But since every doctor said I was “healthy” I just convinced myself that everyone lives their life at a 4/10 of pain and that I was making it a bigger deal than it needed to be.
Today was a HUGE win for me. I have always felt that something was wrong and now I finally understand why. I’m angry and sad and grateful and joyous and worried and all the things. Poor doctor had to deal with me crying on his office for 20 minutes after he told me. But they were happy tears for the most part.
So here’s what im struggling with now: I know these are chronic conditions with no cure… but where do I start with symptom management? What works well for you? what are some tips or tricks you’ve learned that make life easier for you?
My doctor basically just said I need to start swimming and exercising. But how do I make myself do that when I’m in so much pain? what is a good way to start? I haven’t been to a gym since my pain got worse around 2023. And I walk my dog every day but clearly that is not enough bc I’m always in pain. I just love my dog so much that I force myself to do what is best for him.
Idk what exactly i’m looking for and Idk if this is even the right place/way to ask for help. I’m new to reddit. I just really need to hear from other people living with these conditions and how they make it work. What is one thing you do that actually helps but isn’t something a doctor would know to recommend? is exercise really the only treatment?
If you made it this far, thank you for reading. Even just writing this down made me feel a little better (also, english is not my first language, I apologize for any typos) <3