So first, let me start off by saying that for as long as I can remember, I’ve always seemed to be very fragile, yet very tough at the same time. Meaning, I’ve always gotten sick easily, and frequently had various dislocations, tears and sprains, most of these due to me running track and playing sports, I assumed.
At a track meet one day, I was warming up, and randomly passed out, and nothing was ever the same.
In hindsight, looking into all this “EDS” stuff, it was probably the start of my vascular part of it.
Anyway, ever since about 15, I’ve been diagnosed and told a number of things, but most saying that I had Dysautonomia and POTS. Neither had a cure, but doctors said “I’d probably grow out of it”.
I haven’t, obviously, because at 26, I still can’t do too much with starting to black out, and I’m still incredibly heat intolerant.
My heart rate is ridiculously fast all the time and any extra activity makes it worse.
I constantly feel like I’m in fight or flight mode and exhausted, so that hasn’t changed.
Going back to the frequent bumps and bruises:
I ALWAYS got hurt doing things, but I’d play it off because I’m tough and I didn’t want anyone to think I was purposely getting hurt for attention, as kids like to do.
That definitely wasn’t the case. I’d be in gym, and my ankle would pop or roll. I’d be doing push-ups and my shoulder would dislocate. Things like that happened all the time, and eventually, I’d just stop mentioning getting hurt because I was tired of hearing my teachers mouths.
One time, though, I got my thumb jammed in a basketball and it had swollen to the size of a grapefruit and there was no hiding it.
I can also recall a time where I was sitting cross legged in the tub and my knee dislocated. I kept telling my mom and the doctors that nothing happened and I didn’t do anything other than cross my leg in the tub and my knee popped out.
Looking back on all this now is frustrating because it’s like I wish I could’ve known about EDS, so that precautionary measures could’ve been taken well before now, but now it seems too late for the light methods of recovery.
My knees, hips, ankles, thumbs, neck and shoulders all have to be reconstructed or repaired surgically somehow at this point , due to the multiple dislocating and strains on them.
I had my hips, and just had my left kneecap done.
This knee surgery has been a nightmare, though. The pain. God, the pain. I’ve never had so much pain in my life.
The ended up doing a reconstruction because apparently my bones were t even born with a groove for my kneecap, so the had to screw, rod, and bolt it down.
Those are just some of the shots thus far. I had my first at home therapy today and the didn’t change my dressing, so I still have no idea what my leg looks like under that lol.
Below is a little summary I wrote earlier while I was pissed off after my therapy appointment, enjoy lol 😂.
Also, click here for info on EDS Information on EDS
Just had my first knee PT appointment, where I was first warned about saying I’m not at a “9-10” level pain bc I don’t “look”it & I need to be careful saying that. . . Story of my life. I then got thru bending my knee to 81• & all the various exercises like a champ, despite the pain they didn’t believe I was having..
Only for the guy to realize I actually ended up having a patellar RECONSTRUCTION instead of just a release.
My mom had to bring out the pictures to show them having indeed cut into my bones to make a groove for my patella that didn’t exist beforehand.
They apparently hadn’t changed in their system what surgery I ended up having done once they got into it, so they all expected me to have a lot less pain and seriousness.
Huge error on the communication between the hospital and therapy.
It’s time for a long ass nap.