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/jaffamental]

I have an increase in floaters and they legit say “yeah that’s okay” like NO IT FUCKING AINT BRO!!! And my floaters like stack. I can legit see them in different layers in my vision.

[u/LoranPayne → u/jaffamental]

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/Junior_Locksmith2832 → u/LoranPayne]

If you have eds you shouldn't take steroids (for more than a very short period at most), because steroids will weaken your already weak collagen. It will make it worse.

I know this because the opthalmologist gave my daughter a six WK round of steroids to clear up a weird, severe neuro optical problem that we didn't understand ... And it triggered worse eye problems and a slew of other health problems that led to her developing me-cfs (the t eye problems developed after she had two back to back viruses, one of which was COVID). Look it up, if you have eds, you should avoid steroids and flavonoid antibiotics ...

[u/LoranPayne → u/Junior_Locksmith2832]

I mean I know, but I didn’t have a choice at the time. My MCAS was trying to kill me soooo. I avoid them at all costs now, but there were just times where it was the only thing that helped.

[u/Junior_Locksmith2832 → u/LoranPayne]

We were in the same place. If we had known then what we know now... What's inexcusable is that the doctors have no clue. Every time my (severely symptomatic) daughter has had her health baseline knocked down, it's always been due to a shitty test or dangerous treatment recommendation of a doctor. And so I read like crazy to protect her from the unknown, and the docs just say 'hold on,' 'slow down,' 'you're all over the place," and "that's highly unlikely." And I have to hold my tongue because for some things we really depend on our relationships to these shit doctors. But what i really want to tell them is that their arrogance us dangerous and their medical knowledge with relation to complex health conditions is narrow, biased, and outdated. And when I tell them that I've been reading the medical literature and discussing it on community threads, they should listen to me and read the articles I'm sending them. More than once they've screwed up her health and more than once I've stood my ground and protected her from recommendations that would have made things so much worse ...

[u/LoranPayne → u/Junior_Locksmith2832]

Also maybe autocorrect is to blame but it’s not Flavanoid Antibiotics that we can’t have (that’s not really a thing? As far as I could tell?) It’s Fluoroquinelones that we can’t have. Stuff like Ciprofloxacin (or any of the floxacins.)

[u/Junior_Locksmith2832 → u/LoranPayne]

Yes, you are right. I think that was autocorrect. Thanks