Really dry and in pain

[miserable1]

Hi:

Just thought I'd post this here. Not sure if this is the right section of the forum or not, but if your circumstances are at all similar to mine and you found something that works for you, I would love to know, since I am desperate and miserable (hence the username).

I've been suffering from terrible dry eye since July. Before that, I'd had absolutely no problems whatsoever with my eyes and no problems with my contacts either. After all this started, I can't wear contacts at all anymore (and I really hate wearing glasses, but I'm blind as a bat so I have to). This started completely randomly. It may have been triggered by me wearing a 2-week disposable pair of contacts longer than I should have, but I'd never had any problems when I did that before and I'm not sure why it would have lasted this long because of it. I guess my eyes may have just snapped. I don't know. Interestingly enough, it started the day I came home from a routine yearly eye examination, which I guess is a coincidence but it seems strange to me.

I'm 22 and a law student (this all flared up right before I started law school, so it was terrific timing), and this is really starting to affect my schoolwork. I have to read all the time for school, and reading hurts me so much that I now am contemplating dropping out, which really sucks because I've worked so hard to get into a good school with a great scholarship and it would all be down the drain.

I've seen many doctors and tried many different things: Restasis, plugs, warm compresses, supplements, whatever. I stopped using the Restasis about a week or so ago because it hasn't helped my eyes at all and I suspect may have made things worse. Over-the-counter artificial tears do nothing for me. For awhile my eyes were relatively okay as long as I didn't wear contacts, but now they hurt and are dry all the time (and I haven't worn contacts in forever).

The weird thing is every doctor says my eyes don't look that dry at all when they do the stain test, even though I'm in constant misery from the dryness that I feel. I don't understand it. I'm sick of being told by doctors to just "be patient," as I've been patient for so long already. I have a little bit of blepharitis according to doctors, but am told that it's not really any more than normal. I recently went for a bunch of autoimmune testing and am waiting for the results, though doctors really doubt that any of that testing will come up positive.

If anybody out there has gone through similar things to me and found something that helped, I would really appreciate you letting me know. I am depressed all the time because of this, and really behind on my work because I give up on reading and go to bed early every night, since the only time I'm not in pain is when I'm asleep. I'm terrified this is going to last forever.... I'm 22 and I just can't deal with a lifetime of this.

[bakunin]

I have much in commom with you: symptoms much worse than clinical signs, mild MGD said one doctor; restasis seems to meke things worse etc etc.

Doctors haven't helped me so far, just have made me worse.

Now I suppose my symptoms are more from inflammation-hyperalgesia than from dry eyes (or my drye eyes is more an outcome of inflammation than the opposite) . I'm starting trying to attack inflammation on its possible roots: something going wrong with my digestive system/nutrition. I think it is a ground to look for, the digestive system. There are some threads about it.

bests

[Hemu]

I empathize with your frustrations and I'm sure a lot of people in this board do. I'm sorry to hear what you are going through, especially at the age you are in(I am 28 myself).

I know it's very hard to just accept being told to be patient, especially when you are in chronic pain. But please try to hang in there. I'd like to say a couple of things that I hope help you:

1. This condition is frustrating, yes. However, there is a regiment that might work for you that you haven't tried. The trick is finding that regiment and I am sure you will.

2. Is your dryness due to MGD or am aqueous deficiency? I hope you are taking enough Omega 3 and don't suffer from a mucin deficiency. Once you find the camp(or camps in my case, lol), your recovery might get some direction/s. I did do several tests(hormone, thyroid and skin). The one clue I found thanks to that was that I have ocular rosacea as well.

3. There are more drugs in the pipeline and there is more hope now than before, since scientists now understand the human tear film better.

4. Don't lose hope. You will get through this. It's not going to be easy(it is not for any of us) but you'll find the regiment that will make you comfortable. You are on the right forum to seek help/advice and I sincerely hope you find the right medication.

[sazy123]

Hi, im 27 here, Docs say i dont have 'many' sings of dry eye. Well some say i ovbious have dry eye and others say its not that bad. Honestly- i think the reason they dont find many sings is because they are NOT doing the right tests.

Dry eye knowledge, especially related to MGD has moved on the last few years, there are new tests and diagnostis methods. Unfortunately most eye doctors are NOT moving along with the research. If docs looked at the MG's and expressed to see if anything came out, lid inflammation and did a osmoloity test- they would get a better picture- than just relying on corneal staining. Which IMO if you dont have bad aqeuous deficiency- you might have enough tears to prevent 'dry spots' on the cornea. But the tears have no Mebium so dont stay long and are toxic due to elevated osmolity.

I had a osmolity test, this is supposed to be the most accurate indicator of how severe your dry eye is by measuring osmolity. My restults were 'severe'. This matches my symptoms. Yet 'some' docs have told me that im mild due to 'staining' tests. My schimmer is also 5 and 9 which is bad as well.

So the point is dont let it get to you, what you feel is right. Many docs just dont have uptodate current knowledge. Find a better doctor, prefreably one involved in DE research.

[bakunin]

Hi, im 27 here, Docs say i dont have 'many' sings of dry eye. Well some say i ovbious have dry eye and others say its not that bad. Honestly- i think the reason they dont find many sings is because they are NOT doing the right tests.

Dry eye knowledge, especially related to MGD has moved on the last few years, there are new tests and diagnostis methods. Unfortunately most eye doctors are NOT moving along with the research. If docs looked at the MG's and expressed to see if anything came out, lid inflammation and did a osmoloity test- they would get a better picture- than just relying on corneal staining. Which IMO if you dont have bad aqeuous deficiency- you might have enough tears to prevent 'dry spots' on the cornea. But the tears have no Mebium so dont stay long and are toxic due to elevated osmolity.

I had a osmolity test, this is supposed to be the most accurate indicator of how severe your dry eye is by measuring osmolity. My restults were 'severe'. This matches my symptoms. Yet 'some' docs have told me that im mild due to 'staining' tests. My schimmer is also 5 and 9 which is bad as well.

So the point is dont let it get to you, what you feel is right. Many docs just dont have uptodate current knowledge. Find a better doctor, prefreably one involved in DE research.

Good point Sazy. The doctors just care about staining, if we could be blind or not. They care very little about our symptons. I don't have a clue whre I culd do an osmolarity test in Brazil, neither which doctor would measure dry eyes severity by osmolarity test.

[ragazza]

Hi, i am 22 as well and i have the same problem. I am a literature student and i have to read all the time just like you. I've recently been prescribed an artificial tear (systane) and have used it for a month. I don't know if my eyes are better because they burn especially when i am indoors. I always feel that my eyes need oxygen. Last week i attended a conference and my eyes were burning so much that i had to close my eyes during the conference. Well, i think i observed a little improvement as well but this sense of burning is still a problem when i am indoors (not when i am at home). I am considering to see an another doctor because this one said that if i use systane for one month, this problem will go away. I seems that he can be wrong. Not sleeping well is another cause of this burning and i (again just like you) feel the necessity of going to bed early. As a result, I haven't been able to find an exact solution to this problem. I try to get fresh air, i avoid going places which are lightened by artificial light like shopping centers etc. and also which has not enough windows to let the fresh air in. I'll keep trying and if i find any solution to this, i will gladly let you know.

[bunnyrabbit123]

Hi Sazy,
What is "osmolity" test? Where did you have this done? And in light of findings, How is your dry eye treated now?

[miserable1]

Thank you for all your replies. It is good to know that others are dealing with the same things as me, especially because nobody I know in real life seems to at all understand what I'm going through or just how much pain I'm in all the time.

Unfortunately I'm still not any better, still in constant pain, and still miserable. It's frustrating that no over-the-counter medication (Advil, etc) can do anything for eye pain.

Hemu you said to try to find a regiment that works for me, and I have been trying, but I'm not finding it which is making me very depressed. I'm honestly not sure if my dry eye is due to MGD or aqueous deficiency, and no doctor seems to be able to tell me really. My eyes are producing tears, but they have a very short breakup time. And there's a little blepharitis / clogged oil glands, according to drs. So maybe it's both. I don't know.

I'm sick of spending so much money to go to drs and be told the same non-helpful things each time. On my last doctor's visit, he said he thinks I'll have this for life, and although this is what I have suspected and feared all along, it was really crappy to hear him say it. I'm not trying to be over-dramatic here, but with all the pain I'm in constantly and now being told I'll have this for life, I've contemplated just ending it all. And it scares me to feel this way. But I'm just not sure how I'll deal with chronic pain like this for the rest of my life. Now I'm way too chicken to actually do something like that, and reading through this forum, there are people here who seem to have it even worse off than me. I'm not sure how you all are being so strong about it. I guess I am just weak.

Sorry for sounding so dramatic. Anyway, please, please do not hesitate to let me know if you find something that works for you. I just want this to go away.

Oh and in terms of what I currently do:

Right now my regime consists of essentially taking fish oil, a dry eye supplement containing flaxseed oil, and using artificial tears at certain times during the day (not all that often though, as they don't exactly help me). I know this isn't much. The reason I don't do more is I think my eyes are very sensitive, and when I was using a bunch of other crap on them I think they were even worse.

But doing basically nothing isn't helping me either. In the past I've tried Restasis, steroid drops (Alrex, Lotemax), warm compresses, lid scrubs, and punctal plugs. Tested negative for Sjogrens, btw.

Is there some obvious thing to try that I haven't done yet? The dryness is worst near the outer corners of my eyes. I'm not sure if that means anything.

[icycarol]

Similar experience

I can feel you and I am in similar situation. My severe dry eye started in June and I don't know what's the cause. I used to wear contacts every day but after that my eyes are so dry and I can only wear glasses.

I have tried different drops, gels, plugs, and the only thing help is Lacrisert !When I wear it my eyes are about 3x moisture and the pain is gone. Now my eyes are still dry but the pain has relieved so I stop using it(Lacrisert is very expensive). If you are in pain and dry, maybe you can try it.

Carol