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Ehlers-Danlos Syndrome User Group
EDS and my eyes
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
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EDS and my eyes

I am farsighted and my eyes are very different.  2.5 prescription on right and .5 on the left. No matter what they do they can never make my right eye clear.  It has always been the weaker eye (common with EDS). I had brain surgery in February and afterwords noticed I have issues with depth perception.  I went to the eye Dr in May and he got me new glasses and thought that would help...it did not:( My eyes actually have gotten to where the right one hurts all the time...it even wakes me up because my eye is killing me!  I went back to my NL and that visit was horrible.  She said my chiari was corrected and that she did not feel my eye symptoms were neurological (funny since they started after brain surgery ugh) There are some symptoms that are absolutely EDS.  The pain they are saying is because of the ligaments and muscles that attach to they eye, and the blue sclera is EDS, the can't make it see clear is EDS and it always has had focusing issues.  The depth perception...not EDS.  I have also noticed since surgery can't read a book as focusing on something too long makes my eyes really hurt same with driving a car a long distance.  Could be EDS flair...don't know.  So my NL sent me to a KU eye Dr and he spent 4 hours with me.  Every time he thought he found something further testing would show he did not.  One thing he thought was an ah ha was he put a pinhole view over my eye and said now you should see better I said oh my goodness it is so much worse.  He said pinhole narrows the focus and most everyone sees sharper.  He said my lens was not working correctly from EDS.  He said like my other health issues it is not a cut and dry issue and there is not an answer or a fix and they would try to do what they could do yet I also had to understand that somethings they just can't fix.  So here we go again:(  He wanted to partner with my regular eye Dr and said we would try some different things like wearing my contacts but also using a reading glass on top of them when I am reading only to see if it would make me able to read without the additional eye strain and pain.  I noticed after seeing him that I have issues with things in motion...I tried to play a video game with kids and previously I was good and I could not keep track of Mario!  Escalators are hard to figure out! I went to a football game and could not keep track of who had the ball.  A movie panned to the side and I lost track.  All of this is new since my surgery and I have researched that EDS can cause problems tracking...again I did not prior to surgery but my EDS is so bad now maybe surgery threw me into a major flair up.  So my regular eye Dr called and I went to see him.  He started out by telling me that he listened to KU Dr and that he didn't really agree with him on some things yet he was going to look at me and we will go from there.  So we had another eye exam.  It is so frustrating because you get to a point where your bad eye can't see either and they are making you pick one and  ugh.  So there was a point when he was about done and we were testing my eyes.  He was asking which was clearer and of 6 they were all the same.  He said I just don't know.  I said well my eye works hard to focus so I can see them all yet my eye feels differently...I can feel it pull differently with each click you are showing me.  So then he focused on tell me when your eye is not pulling.  So that was something new and cool:)  I asked about the depth and tracking issues and he said that there simply are things that are outside of his whelm of expertise and those areas are out of his area.  He said those things cannot be corrected with glasses and like your KU Dr. I have to agree that they are neurological. He asked me to come back next week and I asked him if there was benefit in continuing to see the KU Dr too.  (now they both want to see my freaky eyes)  I don't want to keep paying both it is killing me!  Come on new year I need my flex account to kick back in. He said yes that KU Dr has seen EDS a few other times and looked at things in a way he would not have and was able to give him insight.  So it sounds like he was a believer by then end of it.  So long story but if anyone is in the same boat I wanted to share.  I wish they had eye numbing drops!
7 Comments
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1903798_tn?1333908888
I forgot to mention that I had not been buying contacts as my new glasses weren't helping.  I got home with contacts and put them in and my eyes feel better with them...I read EDS eyes can do better with contacts.  I wonder if focusing through the glasses or frames being in line of sight are causing additional strain on eyes.... hmmm
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1903798_tn?1333908888
I only wore contacts today and I do not have eye pain!  Crazy it must be affecting me to look through the glasses.
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620923_tn?1393294254

  Well it is a book...lol...but many of the issues I have had b4 my Chiari dx like the depth perception...I know I had it when I drove my DD to Philly to college, she was always saying mom u r almost in the windsheild...I thought it was just my night vision but my depth perception was way off then too...

My eyes were not focusing right either and I got the "well u r getting older speech" really,,,hmmmm I have flares when I can not focus and see to do certain things and following  footballs at games was always an issue  I thought it was bcuz I was not familiar with the game LMAO...really...but the more I hear and understand about both Chiari and EDS the more I SEE it is not me but what I have....

BTW u should see me at the sewing machine 2 pair of glasses on..all the while my eye dr said I did not need glasses...ugh....

DO u also have an astigmatisum?: I know I was told I do and that makes wearing contacts more difficult, not?
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1903798_tn?1333908888
Yes but mine is minor.... Weird my eyes immediately feel better when I put them in and  when I take them off even in a dark room my eyes hurt not looking at anything.  I'm wondering if my Pseudotumor could be acting up....
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620923_tn?1393294254


  Well I was not dx with PTC and I get that as well....could just be an EDS thing...???
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7549973_tn?1391962323
my right eye is +4.00 with astigmatism and my left is 20/20. I have EDS hypermobility type III and also cannot stand wearing glasses! Have to wear contacts and my vision changes monthly sometimes daily like u were saying
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1903798_tn?1333908888
It all ties back to EDS if they can't figure it out lol
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