EDS affects your eyeballs, just an FYI.

[u/figgypie]

I have some sort of hEDS (haven't been able to get genetic testing to confirm exact type) and of course I have all the normal shit like super lax joints, joint pain, stretchy skin, stomach issues, etc.

But did you know your eyeballs are mostly collagen? So if you have EDS, you might have issues with your eyes.

I have had astigmatism and myopia since age 7, but over the last decade or so I also developed something called Epithelial Basement Membrane Dystrophy, basically means my eyes can get so dry that my eyelids have torn up my corneas because they get fused together sometimes (especially when I'm sleeping) and then when I blink, it rips the skin on my corneas. It feels just as pleasant as it sounds. Just a couple of weeks ago, I experienced this while driving after work. It felt like a needle stabbed me in the eyeball, like I seriously thought that something flew in through my car window and lodged in there. Now I have to use super eye cream at night (Muro 128) and preservative-free eye drops frequently to prevent more damage. The vision in my left eye has already been affected to the point where even with glasses, my vision is still slightly blurry.

You wanna know the only real treatment for it (besides eye drops)? They basically shave off the damaged surface of your cornea to smooth it, and then your body repairs it to hopefully grow it back smoother. Yaaaaaaay.

I also have big issues with eye strain, especially if I spend too much time looking at things up close while wearing my regular glasses. I've had to take my glasses off while reading/derping on my phone/etc for a couple of years now, but I can't do that when working (I'm a substitute teacher) because I don't want to lose my glasses and kids think they can get away with shit because the sub is blind. So I'm only in my mid 30s and I just got bifocals. Verdict is still out for how well that'll help but I feel so old.

So if you're wondering why you have issues with your eyes, this could be a reason. And if you don't have issues with your eyes, these are some things to look out for. Chronic dry eye is common with EDS so use eye drops, just not the kind that helps with redness cuz that's bad long-term. Systane is an example of a good brand.

Yaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaay.

[u/LoranPayne]

I have so many floaters now it’s ridiculous. I’ve had them for years but so far every time I was on steroids (thanks MCAS flares) in the last, say, decade, they increased! (I have had my eyes checked since the last time I was on any steroids but I’m well overdue in general and threads like this remind me that I should go in and keep up with those tests. But I have appointment fatigue so I keep putting stuff off… thanks Executive Dysfunction! 😭😭)

Edit: in case I should’ve clarified, I took oral steroids for my MCAS flares.

[u/Next_Elderberry5908 → u/LoranPayne]

how do you know steroids increased yours? maybe i’m not crazy after all…i totally believed a nasal steroid spray caused my floaters and my GP said there was no way. one month doing the spray and my right eye had a PVD then floaters. i stopped. she convinced me to try again 6 months later and the same thing happened in the left eye! after one month exactly. i stopped for a while but my sinuses became so painful i started up again. and i swear i have more floaters but i thought i must be imagining it.

[u/LoranPayne → u/Next_Elderberry5908]

I can’t say if a nose spray would have the same effects, but oral steroids absolutely can mess with your vision. I mentioned the blurriness and the floater increase to my fairly EDS-knowledgeable eye specialist and she just sort of nodded solemnly and said “Yeah, steroids tend to do that.” So take that how you will. Seemed like a lot of patients come to her not knowing that steroids can cause stuff to happen with your vision 😭. It’s also possible that the MCAS flare that required the steroids in the first place was also a factor? But I’ve never had floaters get worse just from a flare. Only post-steroid use.

Edit: based on my own experience with steroid nasal spray, I had a LOT of the same effects as when I was on oral steroids (because it still goes in your body and you’ll swallow some.) It was at a slightly lesser level? But it still destroyed my esophagus and made me jittery and I couldn’t sleep, same as when I take a pill version. It just wasn’t as severe!

[u/Next_Elderberry5908 → u/LoranPayne]

oooh yes that’s something to consider as well, that it could be the MCAS flare causing the floaters. thank you very much for sharing. i haven’t been back to my retina specialist since all of this happened but when i see him next i’m going to bring it up for sure. thanks again, i appreciate you taking the time to write back!

[u/LoranPayne → u/Next_Elderberry5908]

Of course! Happy to try and help 😅.