u/Nelliell

My knee has given me trouble for well over a decade. Because I was uninsured until recently, I always just took it easy for a bit. A few weeks ago I pivoted while walking briskly and the pop happened again. After a MRI I've been informed my ACL is torn, there is significant arthrosis, and the only option is a knee replacement. I'm too young to be able to do that surgery. I was told that artho was not an option. That it will not heal on its own, and PT would help a bit, but it will never be the same.

I'm dealing with quite a bit of grief. I just turned 40 this year. My mother has had both of her knees replaced, so I'm familiar with the lifespan of that implant as well as the recovery required. And now I know that at least one is in my future. And for now...I can't run. I can't stand or walk for hours without ending up walking like a cripple and debilitating pain for weeks. I can't play on the floor with my daughter because I struggle so much to get back up.

Is this really it? Is there truly nothing that I can do but take Tylenol, keep the injury in mind, and delay a knee replacement as long as possible? I'm not sure if insurance would cover a second opinion, or if I'm deluding myself with denial about how things are.

I'm full of such sadness right now.

>MRI reveals a chronic ACL tear

>There is significant arthrosis noted to the medial compartment

I've always been very flexible. At a craft show a few months ago, one of the vendors looked at me oddly and asked me to bend my fingers back. She asked if I'd ever heard of Ehlers-Danlos and while I had, and I knew it had a strong corollary with autism, I'd never explored if I had it. A few weeks later, while recuperating from injuring my knee, I subluxated my shoulder. It felt like it slipped forward out of place and caught. And it's been happening for decades, since I was a teenager. My parents took me to the pediatrician, it was written off as hypermobility, and I was cautioned to just be careful. For most of my life, I knew not to move that arm too quickly in a throwing motion or my shoulder would do that.

Less than 12 hours after the first subluxation, it happened a second time when I was just stretching after waking up. With that conversation at the craft show in mind, I booked an appointment to try to get some answers. Could it be that I had EDS with my autism and that's why that shoulder was prone to that? I had my first ever MRI of that shoulder and I was not prepared for the answers I received.

It's much worse than I could have imagined. Multiple torn tendons, one of them fully, a Hills-Sachs fracture, and a chronically torn bicep. Ortho was blunt: no amount of physical therapy or injections would help it. I need to have surgery. It doesn't cause me a lot of pain. I can't carry anything heavy in that arm, but I'm not in agony every day. I don't know how that's possible with how extensive the damage is, but I am thankful.

I have noticed that since I got the news that I'm more conscious of pain or soreness in that shoulder, and I wonder if it's because now I know or if that has always been there and I just got used to it.

I'm still stunned that this was missed when I was a teenager. Surely the torn tendons and bicep came later, but they only X-rayed it back then and missed the fracture. I'm mad, and scared, and upset, and shocked all at the same time.

All I want to say is, if something is "off", don't ignore it please. My shoulder has been messed up for a long time and I've been compensating so long that I've forgotten what it feels like for it to be fully functional. And, with the subluxations only triggered by quick throwing motions (except the last one), I didn't realize there was anything really wrong. I still don't know if I have EDS. I strongly suspect it, but I don't know if I ever will know.

I wonder if I've been autistically masking the pain this entire time.

I had an appointment with the ortho yesterday and while testing my range of motion he had me drop my arm, hold my elbow up at 90 degrees, and swing it outward from my body. He seemed shocked that I could make it to 80 degrees with no discomfort. It has me wondering, what's normal for that exercise? He does seem to think I may have Ehlers-Danlos and is going to take a MRI of the shoulder to ensure the rotator cuff is intact and also likely refer me to a geneticist.