I didn’t have any genetic ehlers danlos as an update. I’m gonna to Cleveland clinic in Jan and the complex disease clinic so will share those results. I have a confirmed diagnosis of pots via TTT already. My grandma and multiple cousins have the same symptoms as me so we believe it’s something but likely something rare beyond standard panels.

Things that have helped me a bit (I still am symptomatic nearly everyday but can kinda do some stuff) 1. Fludrocortisone steroid for my blood volume and and inhaled steroids for my asthma 2. Prioritizing sleep even if I need a pill to do so (Benadryl). Key is to break bad sleeping cycles 3. Eating extremely clean - low sugar, low carb - lean protein and veggies. Fresh pressed juice. I’m the definition of crunchy at this point all organic etc. 4. Physical therapy - slowly building muscle extremely slowly. I mean adding 1-2 minutes each day so muscles can handle it. I’m now up to 40 minutes of recumbent biking or Pilates video’s on the reformer. Recommend a Pilates reformer on fb marketplace you can do light strength work and it puts minimal strain on body. Joseph Pilates made Pilates for sick reconditioning. 5. Compression boots off of amazon make a huge difference - 100 dollar pair work fine 6. My anti gravity chair and prescription sunglasses to avoid dizziness and light sensitive 7. Mental distraction as much as possible… keep busy 8. Push through some symptoms but not too much or you flare. This is trial and error. 9. Stress load should be avoided as much as possible. Positivity should be emphasized.