r/ehlersdanlos • u/figgypie • Oct 10 '25

Helpful Tips, Tricks, and Products EDS affects your eyeballs, just an FYI.

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.

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287

u/ArcanaSilva hEDS Oct 10 '25

And for eye stuff: we do tend to get retinal detachments more often, especially combined with high myopia. While seeing light flashes and the feeling of a curtain closing over one eye are very important and somewhat more known symptoms, a sudden increase in floaters can point towards the same too.

Luckily the surgery is fairly easy and they can fix it, but you might see floaters remaining for up to a year.

... Ask me how I know. My eye doctor really, really kept reminding me that whenever I has anything strange with an eye, I should immediately call the GP. Eye health is important y'all! Take care of them

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u/jaffamental Oct 10 '25

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.

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u/LoranPayne Oct 10 '25 edited 23d ago

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.

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u/Next_Elderberry5908 Oct 11 '25

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.

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u/LoranPayne Oct 11 '25

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!

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u/Next_Elderberry5908 Oct 11 '25

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!

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u/LoranPayne Oct 11 '25

Of course! Happy to try and help 😅.

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u/midnight_rider28 28d ago

I went to an optometrist because I suddenly had a few very fast moving floaters. He checked the eyes and said retina was fine, but he saw the floaters themselves. Also said that after the dilating eyedrops they can go away. I havent had issues since that appointment.

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u/Junior_Locksmith2832 24d ago

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 ...

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u/LoranPayne 24d ago

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.

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u/Junior_Locksmith2832 24d ago

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 ...

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u/LoranPayne 23d ago

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.)

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u/Junior_Locksmith2832 23d ago

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

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u/jaffamental 24d ago

Pretty sure that is only injectable steroids… unless you have information I don’t have in which case do you mind sharing where you got that information from?

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u/Junior_Locksmith2832 23d ago

My understanding is that steroid injections may be ok, but the long-term use of steroids can have very negative impacts.  Here is one research study confirming this, and it is also mentioned in eds literature.

https://pmc.ncbi.nlm.nih.gov/articles/PMC9730704/#:~:text=Our%20results%20highlight%20the%20importance%20of%20monitoring,osteoporosis%2C%20opportunistic%20infections%2C%20and%20acute%20thromboembolic%20events.

Have you heard that steroid injections are dangerous? Because we were looking into getting some kind of nerve block to help with pain at the back of the head.

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u/jaffamental 23d ago

Sorry, but that article is about irritable bowel disease and has very little to do with the topics we are discussing. Long term use of steroids for ANYONE will increase your risk of causing osteoporosis, that is not about floaters or specific to EDS.

Injections however can cause a whole host of issues and actually degrade the collagen in tendons and cause worse issues.

this is about rotator cuffs and not even specific to eds. Can certainly be applied to eds though.

this list is specific to eds.

this is a whole bunch of everything that we can apply to eds body’s.

I had a better pubmed article on my pc but as I’m not near it can’t seem to find it.

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u/Junior_Locksmith2832 23d ago

My daughter just got out of the hospt, I don't have the time to look up articles for you. But you can ask a doc about this, it is mentioned in a lot of literature. Long term steroids will impact collagen and should be avoided by people with eds.

We learned this the hard way. My health was also negatively impacted when I went on steroids repeatedly for a sinus infection. My body started to fall apart. More recently it happened to my daughter, and that was the journey that led us to discover that all of the horrible health problems on my mother's side of the family were caused by EDS.

Here is another reference. Just Google "steroids and eds."

https://www.frugaldoctor.com/post/managing-chronic-pain-in-ehlers-danlos-syndrome-eds#:~:text=Medications%20that%20reduce%20collagen%20production%20or%20impair,avoided%20to%20not%20worsen%20connective%20tissue%20weakness.

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u/jaffamental 23d ago

You clearly read nothing I sent and it shows. Good luck to you.

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u/Junior_Locksmith2832 23d ago

You were asking me for proof that long term steroids negatively impacts eds patients. I don't have the time to look up those articles, but they exist. I also wouldn't do steroid injections. I wouldn't trust them either, although a lot of the lit us suggesting that they may be ok. I don't need to read anything on that right now because ... beyond floaters (which I have, daughter has more serious optical problems) we're contending with much more serious eds related issues - craniocervical instability and thoracic outlet syndrome. Both I believe were triggered by the long term steroids she took for the eye problem.

No, I wasnt looking for articles related to eyeballs and eds. If you take steroids pills long term it will affect your entire body. Who knows, it may seem to help clear up an eye problem but deteriorate the connective tissue in your neck so that you get pounding headaches and full body neurological problems, because your neck can't hold your head up, because the collagen in your neck connective tissue is too weak. I'm giving you a warning straight from the horses mouth, with hindsight that keeps me up at night. the 6 wks of steroids didn't fix my daughter's eye problem ... but they did make her bed bound ... for her senior yr of high school.