I would begin to find things that work well to help your pain. I am a lover of fingerless compression gloves for my hands going numb, definitely something I wish I knew sooner. But also don’t push yourself too hard, if you are having a bad pain day then do not do things that will agitate your body it will only make things worse for you that day.

Figuring out my worst joints and using braces for them is a life saver.

Find a specialist eds physio and ot you can work with. also get referrals to relevant professionals.

The Ehlers-Danlos society has a ton of good resources for Ehlers Danlos Syndrome. Best of luck to you!