Thankful I found this site! It has given me hope

[canndym]

I have had dry eyes for years, I have been told since childhood that I am a partial blinker. Through my university years they have gotten dryer requiring drops throughout the day. Then last year I started to get allergies to my makeup, environmental it seemed like everything. Then Blepheritis came... Last fall I started having the feeling there was an eye lash in my eye since my scaring had signficantly increased in the previous few months. I also noticed that I didn't seem to have tears when I cried anymore. I told this to my physician who started laughing and said if I didn't have tears my eyes would be dead, you can't loose your tears!
Man was he ever wrong... Dec 2010 I woke up in exteme pain I tried to go to work but ended up having to go to eye doctor for an emergecy appointment. He said I torn my scar open on my right eye and that I no longer had tears... it said it could be sjogrens and since we have alot of autoimmune diseases in my family on both sides I was devistated. The next week the same happened to my left eye.
The past 10 months I have basically quit living my life. I go to work take care of my kids and try to find a way to get my tears back... Its been my obsession to find out what is wrong with me so I can just get it fixed now!
It's been a long journey and after seeing 6 different specialists who all disagree what is wrong with me since all my blood work is perfect except low IGA I have no diagnosis. Since I have been trying restasis, serum drops, ointments, antibiotics, steriods, oil supplements, compresses, lidcare my blepheritis is well controlled my bu my eyes are still severely dry and I need drops every 20-30mins. I also still have recurrent opening of my scars that last for 2-3wks before resealing. I have light sensitivity and always wear sunglasses even indoors.
1 1/2 wk ago I changedopthamologists and he took me off the artificial tears I was told to se previously as he said hte preservatives could be damaging my eyes since I use them sooo much... I thought why did my other doctors but me on them! did they not care about my eyes obviously not...
The next day my eyes reopened and it took me to a very dark place the worst its been, I worked feed the kids then went to bed I felt completely hopeless like life wasn't worth living anymore. But to my surprise when I phoned my new ophamologist in extreme pain he actually wanted to see me and gave me treatments to try help the pain. He even took the time to explain what was actually wrong with my eyes turns out I have very little if any aqueous or lipid tear production. This has taken me on a journey to change my focus from curing my eyes to help manage and live with them better. Finding this site has been a miracle for me and has given me hope again. I have ordered moisture retaining eye wear to see if that helps decrease the drops or at least let me go for walks again. I have also been looking into the PROSE treatment and I am hoping I will be a candidate for them. They are expensive so I will likely have to try get a loan or remorgage my home to make the trip. If anyone as any experience with PROSE good or bad I would appreciate any information.
I am looking forward to learning so much more here! I want to remind people not to settle for a doctor who does not care about you because there are better ones out there you just may have to weed through some bad ones to find them.

[tearless2]

Welcome to the site, it sounds like you are very motivated and have tried a lot of treatments. Your last physician sounds like he is a terrible doctor and listener. I hope you can find a more sympathetic one. Have you seen a rheumatologist for testing?

I may have sjogren's but with basically normal blood tests. When my eyes forst became inflamed it took like three days of gradual worsening and then I was in pain for 6-8 months before I wasn't thinking about my eyes ALL the time. Now, my eyes are much more comfy. I have a really good optometrist who specializes in dry eye and he has been very helpful. It sounds like you are on the right track with your new eye Dr. who said not to try drops with preservatives. Have you tried preservative free drops? I like Oasis.

Keep us updated on what helps, it is hard to get the inflammation under control but you will get there!

[canndym]

Thank you for replying. I feel like all I hae done if see specialists but not the right one yet. I saw a rheumatologist in March she said that since my blood work is fine and I do not have severe dry mouth I cannot have sjogren's, she said my fatigue was from being on bedrest during my pregnancy 4 yrs ago and to go to physio and I will feel better. She also said my eyes would get better I just had to wait the 6 months for the restasis to work. She thought I had Lichen Planus since the lining of my mouth peals off sometimes. I am still exhasted and my eyes are the same I am just going broke paying for all these eye drops i"m at around $500 a month for drops now. I called her office back this summer to tell her I do not feel any better after physio but she said unless my joints swell and ache I cannot be her patient. I found that very upsetting.... I have also seen an oral specialist about the lichen planus he said forusre not that but he thinks may be sjogren's(since I have low saliva poduction, celiacs, or chrons. Then I saw a drematologist which said the exact same as the oral specialist. In September I saw a gastroentrologist and she said because my blood work is perfect except I have low IGA she thinks I am fine it's just IBS and all my symptoms are unrealated illnesses. I am suppost to go for a biopsy sometime but I am still hesitant to go especially if she is only doing to reassure me I am completely healthy not to find out what is actually wrong.
What have you done that has helped your eyes not be in pain?
I have not tried Oasis I actually have never seen them here, I am now on Refresh Endura. I find they burn a bit but I'm not sure if that's from flare up or the drops themselves.