By Bridget on Monday, June 05, 2000 - 03:27 pm:

Do any of you have difficulty wearing contact lenses? The last time she had her eyes checked, the optometrist seemed perplexed that she had scratches on the
cornea. Now she is having more difficulty even wearing the soft contacts. She keeps cleaning them, always feels there is something on them or her eye, etc. Thanks.
Bridget, Tucson

By Sue C. on Monday, June 05, 2000 - 03:28 pm:

Eyes are made of collagin, which is our problem.

My eyes tend to be dry, so when I did wear contacts, I would put drops or extra saline in to keep my eyes wet. I also found that removing, rinsing with saline, and
reinserting was quite refreshing in the middle of the day.


Are her contacts relatively new? Does she clean them thoroughly? If not, calcium deposits form which are hard to see, but are scratchy and can't be removed from
the lens.

Also, does anyone else have fairly small pupils on a regular basis?

By Johanna on Monday, June 05, 2000 - 03:28 pm:

Not at all, my pupils are (too) large

By jayne on Sunday, June 11, 2000 - 12:01 pm:

I dont know if this will help but I went for an eye test a little while ago an I was told people with joint problems can suffer from very dry eyes

By Sheena on Friday, June 30, 2000 - 11:54 am:

I have permanently tiny pupils. But I have worn either hard or gas-permeable contact lenses for over 30 years.

By Bianca on Friday, November 10, 2000 - 01:27 am:

Lenses which suck themselves on the eye.
I have hard flexible lenses and they suck themselves from time to time on my eyeballs, so that I must solve them carefully. I wear lenses since about 8 years, but this problem is new since last winter. I went to my opticien and he told me that he never saw this before with hard lenses. He cannot explain it, but I think that it may be a connection from very dry eyes and the ability of my cornea, which maybe hyperflexible, too, to adapt its form to the form of the lenses.
Does anyone know about this problem? My opticien will try to get same special adapted lenses to the corneal radiuses, because normal flatter lenses will dammage the cornea.

By Linda on Sunday, December 31, 2000 - 09:27 am:

I have EDS Type III, and Type I also. My pupils are always too large--they let in too much light, which is often painful and causes headaches. I have also been told that my optic nerve is "grainy" and that my vision cannot be corrected better than 20/40 because of it. My genetecist also says I have blue sclera. I wear glasses, but have never tried contacts. Would contacts be a better or worse choice? Are all of my eye problems probably EDS related?

By Bianca on Sunday, December 31, 2000 - 01:32 pm:

Some news about my lenses:
I have now again hard flexible lenses, but a bit smaller in size and from another company. Until now I am very happy with them. I sometimes nearly feel that I have something in my eyes.
The theory of my opticien about sucking lenses is that it may be because I have lost 20 kilos of weight and not because of a kind of hyperflexibility of my eyes by HMS like I was liking to suppose.
To Linda: I am short sighted (minus 9 dioptrias) and the big advantage for me is that I see a lot better with contacts, because they don't make the world so small.
But the problem with light is bigger with normal contacts. I don't know whether there are some special dimmed lenses which help also with too much light.
When you read the litterature about EDS there are a lot of eye problems described so you may have a big chance that your eye problems are from EDS.

By Lin on Tuesday, January 02, 2001 - 05:22 pm:

I have EDS III and HMS, and astigmatism. i have worn glasses wince i was in first grade, and wore contacts for a year and a half last year before my insurance changed and forced me back to glasses. my eyes also tend to be very dry, noticed that, when i wore contacts i was also frequently putting drops in them, and my eyes are very dry with glasses too. My pupils are also very large, and when i do not wear my glasses i get migraines from eye strain, and terrible headaches from bright sun outside.. i wonder if there is a connection between all that! since my diagnosis, i am learning so much more of my little problems are all related! it finaly makes sence to me!
Lin

By Johanna on Wednesday, January 03, 2001 - 07:26 am:

Well Lin, looks like you've got the same eyes as me. Dry, too large pupils, headaches from the light...
Last october I saw an eye-specialist on the hospital to make sure I didn't have marfanoid eyeproblems. She said my eyes are OK, that is, their shape and structure is. She did agree on the large pupils and the dryness, but she said those are variations on the usual.
While doing some research on connective tissue deficiencies in general I came across a book that mentioned very SMALL pupils being related to Marfans.

By Susan on Friday, February 09, 2001 - 03:23 pm:

To answer your question, Yes, I do have difficulty wearing lenses, but the only way to correct my vision for the corneal disease that I have (kerataconus) is to wear gas permeable lenses (like the hard ones). I too began wearing glasses at 8 years old, and at the age of 24, this corneal disease was diagnosed, and I have been up and down since then. I am now 44, and I have very dry eyes, and some aching of the eyeballs now and again. My vision can not be corrected with glasses. But I convinced the opthamologist to work with me to find a eyeglass prescription to at least help me out, because there are times when my eyes are so dry, that I cannot tolerate the lenses. The lenses take very special care to be made as they have to have just the right amount of steepness and yet not too much, and so they don't rub on my corneas. As the disease continues to break down my corneas, then the lenses have to be refitted (goes through some very progressive phases on occasion). When the lenses rub on the cornea, it causes scarring, and continues to worsen my vision. Eventually, I will end up having corneal transplants, but am told that is a long way off. I might consider suggesting that she seek another opinion. Good luck to you.

By Susan on Friday, February 09, 2001 - 03:26 pm:

To answer your question, Yes, I do have difficulty wearing lenses, but the only way to correct my vision for the corneal disease that I have (kerataconus) is to wear gas permeable lenses (like the hard ones). I too began wearing glasses at 8 years old, and at the age of 24, this corneal disease was diagnosed, and I have been up and down since then. I am now 44, and I have very dry eyes, and some aching of the eyeballs now and again. My vision can not be corrected with glasses. But I convinced the opthamologist to work with me to find a eyeglass prescription to at least help me out, because there are times when my eyes are so dry, that I cannot tolerate the lenses. The lenses take very special care to be made as they have to have just the right amount of steepness and yet not too much, and so they don't rub on my corneas. As the disease continues to break down my corneas, then the lenses have to be refitted (goes through some very progressive phases on occasion). When the lenses rub on the cornea, it causes scarring, and continues to worsen my vision. Eventually, I will end up having corneal transplants, but am told that is a long way off. I might consider suggesting that she seek another opinion. Good luck to you.

By Sharon on Saturday, February 10, 2001 - 04:28 pm:

Like others I have too large pupils that let in too much light and make me photosensitive, Imy boyfriend laughs at me because I wear sunglasses all of the time even when it is raining etc and not very bright outside. I also have my optic nerve in the wrong place and I look like I have glaucoma but I DON'T it is just the way that my optic nerves look (Sort of dead in the middle) I also have floaters in my eyes and have these checked out. My Mum has Sjogren's syndrome so I am very cautios of Dry eyes etc as that is one of the symptoms along with other dry mucus membranes.
Sharon

By Christine on Wednesday, March 14, 2001 - 10:21 pm:

Does anyone have jaw or neck-related visual problems?

I have HMS and fibromyalgia. I developed severe eye pain when I was writing an essay for uni 18 months ago. For about 2 months I just slept all day because just looking at things was exhausting and painful.

An optometrist said I had convergence difficulty and gave me glasses with prisms, which helped my eyes get out of the severe stage, but after a few months my eyes worked better without them. I was also given exercises, which I tried for a while, but they were not just difficult to do, they were impossible. My eyes just could not do the exercises...it would strain them more and make me exhausted.

My optometrist suggested getting my jaw and neck treated, as problems with these could directly lead to difficulties with the eye muscles. I tried a few things... a chiropractor would move my cranial bones and as he held them in a different position I was amazed - I could see properly and without pain. But when he let go it would just go back, which was frustrating.

My osteopath probably helped me the most by realigning my jaw and treating my neck. My right eye actually used to visibly sit in a position that was lower than the left. Now they look even.

I still have trouble with my eyes, and can't read without eye pain, getting dioriented, getting a headache or a migraine. It is difficult to do any activity where I look down, especially when I have to think at the same time. Organising belongings or a schedule is exhausting, which is annoying because I used to love organising things and feel agitated when things aren't organised.

I am hoping more prolo shots in my neck and jaw will help my vision. Dr Hauser has written about Barre-Lieu syndrome, where loose ligaments in the neck cause head problems like visual disturbance and sinusitis. There are also a couple of jaw syndromes that cause visual disturbances.

From recieving treatment, I have figured out that different parts of my neck jaw affect different eye muscles. Right after you have prolo, you have a temporary stabilising effect and you feel a bit normal for a while (it fades until you have all the treatments and regain normal strength). After my prolo treatments in the neck, my eyes worked a bit better. The muscles on the inside (towards the nose) worked better and the pain there was alleviated. After prolo to the bottom jaw, the muscles toward the centre of my eyes worked better and there was less pain. The best was after prolo to my jaw. The pressure on the outside muscles of my eyes was released. For the first time in over a year, I could easily move my right eye to the far right, and I could see things clearly in that direction. It felt absolutely blissful! I am hoping more treatments will make that permanent.

I know my eye problems aren't as serious as some people here, but thought I'd post what I had experienced for anyone who has the same type of difficulty. It really is amazing how sometimes the problem seems to be in one place, but it is because of another area. A lot of people don't realise this, especially doctors. I mean I nearly drove myself crazy trying to get my eye muscles to work with exercises, and it didn't happen, because they can't work until my jaw and neck are normal.

By Caryl Robin on Sunday, July 08, 2001 - 06:14 am:

For years Eye doctors branded me a malingerer because I would complain that every day my vision was different-blurring one day, the next day my glasses worked well. I compained my "eye lids hurt" (now I know I was supposed to call it irritated or sand-like feeling).

So why address this now! Because yesterday a doctor decided to think and listen for more than a second before branding me a nut.
He told me I have a severe Dry Eye Syndrome associated with EHLERS-DANLOS SYNDROME.

The artificial tears are not yet resolving this issue and I want to give it a month to see if it improves. However, I would like to hear from anyone who knows anything about how to manage this problem and what I should be aware of. Oh yeah, Alternative treatments would be helpful too.

Thanks for your help!

By Caryl Robin on Sunday, July 08, 2001 - 06:17 am:

For years Eye doctors branded me a malingerer because I would complain that every day my vision was different-blurring one day, the next day my glasses worked well. I compained my "eye lids hurt" (now I know I was supposed to call it irritated or sand-like feeling).

So why address this now! Because yesterday a doctor decided to think and listen for more than a second before branding me a nut.
He told me I have a severe Dry Eye Syndrome associated with EHLERS-DANLOS SYNDROME.

The artificial tears are not yet resolving this issue and I want to give it a month to see if it improves. However, I would like to hear from anyone who knows anything about how to manage this problem and what I should be aware of. Oh yeah, Alternative treatments would be helpful too.

Thanks for your help!

By silvia on Tuesday, July 10, 2001 - 02:03 pm:

Hi Caryl,

I have HMS but don't have that eye problem. However, I do know of a condition known as Barre Lieou syndrome and one of its symptoms is blurred vision. I was diagnosed with this condition by the same doctor who diagnosed me with HMS. He told me it was due to weak ligaments in the neck. The symptoms I experienced due to the Barre Lieou were eye dilation, head pressure,tinnitus (clicking sound in ears), and involuntary throat movement (trembling). I started prolotherapy recently and most of those symptoms have disappeared with the exception of the tinnitus.

I don't know if this is why you experience blurred vision but still hope this information is helpful

By Pat on Wednesday, July 18, 2001 - 03:17 pm:

Wow! Caryl and Silvia have given me food for thought! My eyes change from day to day. I wear progressive lenses and normally can't read anything without them, but, wouldn't you know that the day I went to the Optho, I read just fine with no correction at all! I'VE thought I was crazy.I also have the dry eyes, but haven't spoken with anyone about that yet.
Thank you!

By Dianne on Tuesday, December 04, 2001 - 12:19 pm:

My 16 year old daughter has very loose ligaments and frequently dislocates joints. Recently she developed a black spot in the centre of her line of vision. The spot has now been there for 6 months, it doesn't move and doesn't change. She did lose some peripheral vision but that has improved. Doctors are baffled. Does anyone know about this?

By Sheena on Tuesday, July 30, 2002 - 02:30 pm:

Has anyone had either of these? A "pinching" pain in the eye, or tunnel vision with some tingling on one arm and one side of the face? My daughter gets this. I was interested in the post about neck pain, as she also has neck pain which the physio says happens when she bends her head too far back (too far for normal people, but not for HMS people!) Her vision has also changed from slightly long-sighted to slightly short-sighted.

By fiona on Friday, October 24, 2003 - 10:58 am:

I have just been diagnosed hms and my right eye has been aproblem for over a year - they are testing me for thyroid eye disease which you can have with negative thyroid blood results, symptoms are severe dry eyes, some double vision, mabey this is worth asking about if you have similar.

By M on Monday, October 27, 2003 - 01:05 am:

dry eyes? have they thougt of Sjogrenssyndrome?