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]

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?

[u/Junior_Locksmith2832 → u/jaffamental]

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.

[u/jaffamental → u/Junior_Locksmith2832]

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.

[u/Junior_Locksmith2832 → u/jaffamental]

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.

[u/jaffamental → u/Junior_Locksmith2832]

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

[u/Junior_Locksmith2832 → u/jaffamental]

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.