By sun on Tuesday, October 03, 2000 - 04:36 am:

I have eds type III and over the last few weeks I've been getting chronic pain in my eyeballs, my GP says that there's no such thing as pain in the eyballs and told me that taking aspirin wouldnt do me any harm if I insisted that the pain was still there. I saw an opthalmologist and they couldn't find anything either. I'm worried that this is an indicator of something more serious. What could cause this pain?

By Toni on Sunday, October 15, 2000 - 10:12 pm:

I wanted to say something to you about eye pain. DON'T IGNORE IT!!! Don't let anyone tell you to, either. People with fibromyalgia, autoimmune disorders, arthritis or other chronic pain often have eye problems. The usual root cause is dryness. The tear ducts die. The next step is the worst and hardest to treat: chronic corneal erosion. I had been told by an opthalmologist not to worry about the pain I was feeling in my eyes and he hinted that I worried too much about the dryness. Then I had a corneal erosion and saw a REAL opthalmologist. He was alarmed that I had been walking around with such dry eyes. I have now had 6 horribly painful surgeries on my eyes and the 4 worst ones could have been avoided if I hadn't listened to the asshole! I have all my tear drains permanently lasered shut. To correct the corneal erosions which had become chronic because of the untreated dryness, I had to have several unbelievably painful surgeries called stroma punctures. Don't let this happen to you!!!!! Start using Refresh PM at night and Refresh eyedrops in the little tubes (preservative free) you might also consider taking extra antioxidents, especially beta kerotine. Take care of your eyes!!

By Claudia on Friday, November 10, 2000 - 09:54 pm:

WOW. Iv'e never even thought twice about my eye pain and dryness. I have type 3 eds. But since I have 20/10 vision, I never thought my eyes could be affected. They are so dry sometimes I have to take a nap so I don't have to keep them open. I go through visene like toilet paper. I will talk to my doctor about this. Thank you.

By Susan on Friday, February 09, 2001 - 03:06 pm:

Hello! I am astounded to read this. I am 44 years old, and I was told nearly 21 years ago that I had a corneal disease called Kerataconus, which is a deterioration of the cornea. Well, I have dealt with the disease, and had some real bad times over the years. I deal with aching eyeballs, and even more than that, dry and itchy eyes, and a few months ago I started having to use the Refresh drops during the day, and a thicker gel drop called Celluvisk at night. This has been another medicine to add to the collection, but it does help. If I don't use the drops regularly I experience plenty of discomfort. I also started taking a natural supplement that is supposed to aid in eye healing called Optex (got this from Dr. Wm Faber).
I haven't checked in with the Hypermobility Bulletin Board for quite some time, but having a snow day, and taking the time out for myself. Anyhow, recently I was doing research about my corneal disease to find out that studies indicate that one of the causes it can stem from is, "systemic diseases such as Ehlers-Danlos, etc.". I have not been diagnosed with ED, but hypermobility. Your comment is the first I have noticed to mention eye problems. I really would love it if the researchers, and doctors could put all the resources together, to see what type of correlations there are, and how to best prevent or aid all of these problems.
I would like to hear more about people with eye problems that also have hypermobility related problems. I am also curious to know any other ailments that hypermobile sufferers experience, would be interesting to find out more about the background of people... Good luck with your eyes, and hope things get better. By the way, I am curious about your vision, and do you wear contacts or other eyewear?

By Gwen on Friday, February 09, 2001 - 05:47 pm:

There is another condition called Sjogrens (pronounced shogrens)Syndrome which includes hypermobility and dry eyes among its symptoms. I'm afraid I don't know a great deal about it but there are websites if anyone is interested.