Struggling with Hypermobile Knees

Hi everyone! I (24f) am new to managing my hypermobility. Sorry in advance for the long post but I really need some words of advice or encouragement.

My mother, sister, and I just found out recently we all have hypermobile ehlers danlos. At the same time, I found out that I have bone contusions, patellar tracking, arthritis, and tears in my medial meniscus caused by hyperextending my knees when walking and running. I’m happy to finally have an answer, but it has been kind of devastating.

I used to do lots of sports and ran cross country for 2 years when I was in highschool. I was by far the worst person on my team, losing every single race I was a part of, but I stuck with it believing I would improve with time as all of the other new runners did. As I continued, I remained absolutely terrible at running, and I started experiencing horrible knee and joint pains which led to me quitting and not exercising for a long time.

Last year, I started exercising again without knowing I was hyperextending my knees. I worked out 5x a week (mostly running, squats, and stairs) for around 3 months last year and stopped when I started having terrible knee pain (which I hadn’t experienced since I quit running in highschool). I had to wait around 8 months for an appointment to assess the damage, which was worsening the whole time I was waiting. I could barely walk by the time of my appointment.

Now that I know about this issue, I am working hard to keep my knees in a normal position, but it’s been really difficult. I am going to physical therapy once every 2 weeks, and I basically have to relearn how to walk because my hip has a lateral tilt and I’m pigeon toed. My normal gait is a catwalk strut.

I really want to be able to work out again. Or at the very least, I want to be able to walk again without pain. I miss having activity in my life, even though I know it was hurting me. I work in an office sitting almost all day and I’m on adhd meds that make my appetite very sparse. I am worried about becoming frail and having no strength. I feel 100 years old, and it’s getting hard to see the light at the end of the tunnel.

Has anyone had a similar experience? Did it ever get better? If you have gone through this before, please tell me what made it easier for you. I am feeling very alone in this; dealing with a disability in my 20s has been very isolating.