u/Mysterious-Bobcat-53

Have you found it works for the bikini line?

Ugh opening water bottle or taking of metal caps on glass bottles oa the worst!!!!

Yes… for me it kinda feels like because I got the adhd more under control I was able to then focus on other issues that have been plaguing me for years. I had the executive function to do more research and get organized enough to seek diagnosis and find doctors, and through educating myself I’ve become more aware of the fact that I’m in pain and that being in pain isn’t normal for everyone… so it’s hard to say if it actually got worse but definitely after my adhd got helped I became more aware of the EDS symptoms. I finally had the mental space to put the puzzle pieces together. I tgink the adhd meds I’m on also make my interoception worse which causes me to neglect my bodys needs which causes more physical problems.

I’m deaaaad

Ooh and consider a neck fan!

I’ve never been able to afford it but I’ve always fantasized about splurging on a first class seat and having lots of space to move around and readjust throughout the flight 😍🙃

I love yoga and I still do it, I did a 200 hr teacher cert so I have a good idea of how to modify for what my body needs. I basically skip anything that is a stretch and only do the strength related stuff. And I modify a lot of that too based on my energy or strength that day. I’ll do child’s pose or just sit and breathe during deep stretching. Or I’ll sit in a similar position without stretching, just so I don’t call as much attention to myself 😂 like if everyone is doing a wide leg straddle stretch I’ll open my legs but bend my knees a lot and place my feet on the ground and just breathe. I’m really connected to my yoga community so I’m okay with doing extra modifications or participating differently because it means I can stay part of the community. If I wasn’t as connected or deep into the study of yoga and teaching, I’d probably switch to Pilates

I cross posted in r/autism and r/actuallesbians so hopefully crowd sourcing from all three angles 😂 and I appreciate the advice to get to know them well first, that’s generally what I do, and maybe I just have to accept that it’s gonna be awkward no matter what and lean into cute joking about it 💕 thanks for the kind words

I had bronchitis in October and my voice hasn’t been the same since, always a little scratchy or congested, sometimes very. It’s part of what lead me to figuring out o have EDS

Ketamine infusions and lozenges really helped my anxiety and depression, in combination with DBT therapy

I had bronchitis for two months last year and started noticing all my EDS symptoms during and after I got better. The bronchitis definitely aggravated the EDS symptoms, it’s actually what led me to doing research and realizing I have EDS and getting diagnosed!

I relate to this so much! I didn't realize I've had chronic pain for a long time because I thought the pain had to be debilitating to count. And I thought it was normal to have dull aches and discomfort in my body. Was shocked to find out no, this is not something everybody experiences lol

lucid dreamer here, it's awesome but basically means you're never getting restorative sleep, i always wake up exhausted from dreaming lol

love to stretch my big toes up and then cross them over my second toes

SAME

i do this thing where i kinda scrunch up my face to sniff in and out until I feel even based on the sound quality of the sniffs, the number of them, the amount of flare of my nostrils, and the general feeling of fullness in my nostrils (e.g. amount of snot boogers etc). i hate this one how do i stoppppp lol

i wish i could immobilize my nostrils so it wouldn't be an option. then i'd go back to my normie ones like teeth clenching and finger tapping and cheek biting heehee

yes!! if I don't move for most of the day my legs and lower back hurt all night. Still trying to find a happy medium between how much exercise and rest I need. I read somewhere that it takes someone with hEDS three times as long as others to gain muscle, I'm guessing this is why. The risk of overdoing it either way (too much or too little exercise) setting you back and then just making slower progress because you can't exercise too hard.

Thanks for all the responses! Super helpful and validating to hear I'm not the only one who experiences this. I'm going to ask my doctors about all of this, especially the craniocervical instability, eustacian tube and inner ear fluid. I've been trying to massage and stretch my jaw so I'll keep doing that, and also ask my doctor about antihistamines :)