I am getting more and more crippled...

[Roderick]

I was able to keep my DE/MGD/whatever problem to a relatively stable level from November to March, but ever since early April and the warmer temp
eratures it seems that every day things get continuously worse.

My eyes aren't red, there are very few red veins but most of the sclera is white and looks healthy, but my inner eyelids hurt a lut, and it's especially the nerves on the eyelids that do. In the mirror on my upper eyelids I see a few nerves running from the skin under the eyebrows (sorry not English native) to the lids, and some of them hurt a lot. When I press them it seems like it is the source of most all the pain I feel.

But anyway ever since that time it keeps getting worse. I was able to get my degree, but now I can stand using my computer so little that I will need to go on welfare in order to pay my rent. I can't summon enough energy to go on an ambitious job hunt and as my job requires the use of a computer I couldn't do more than 1-2 hours of work a day.

Those sore nerves are now forcing me to live a hermit's lifestyle. I can't look up or to the sides without immense lid pain. Anything that induces any kind of pressure on the lids (and there are LOTS of movements that do) hurt to either insignificant or huge degrees. If I lift something heavy my eyelids hurt for a while, and it's the same thing if I exercise. Sometimes even just chewing, talking, swallowing, wearing my glasses or sitting on a hard chair make them hurt like hell, so you can imagine how inconvenient that can be. I go out very little anymore, and I don't go out to walk at night like I used to, because my lids and eyes are drawn to all the night lights and the involuntary movements that is induced produces a lot of hurt.

Now it's been a week since I started to notice an intermittent pulsation in my left upper eyelid, it happens a few times every day, it is not painful though but unsettling.

Most of what I try makes the problem worse in some way to various degrees, it's like everything is a double-edged sword. This includes warm/cold compresses, drops, lid scrubs... so I've yet to find a way to truly alleviate the pain.

I also have no one to talk to, I spend all day in my apartment, or I go out aimlessly and meet no one. I know no one in this town anymore, and the 1-2 relatives I am closer to are clearly becoming increasingly unsettled by how dire my situation is, and how powerless they are in helping it. Nothing happens to me so I have little to talk about. And at this point I probably would be unable to stand most any social situation anyway.

It's not rare for me now to do nothing of a day but moving a round and actively figuring out places to be or postures where I'd feel less pain, so I have to dedicate myself almost all day to this condition. It hurts for every waking second, affects everything I do and I can't ever, ever forget it. At this rate I'll soon be forced to spend all of my time in a darkened room staring at the ceiling, and even that wouldn't give me much solace. I have a hard time thinking straight and focusing on anything. It hasn't stopped worsening in three months and now it's so bad and so crippling that the pain almost make me wish I was dead or unconscious all the time. Simply getting through one day is an absolute torture.

The eye care I receive here is utterly inept, so I have decided to go see Dr. Latkany as he of all people will be able to tell me what I have, and good ways to treat it. But even then, I have doubts. If I get something like Azasite or Restasis and it backfires horribly, only for my lids not to get back to their previous state and make the whole situation even more intolerable (like has happened many times already), I don't know what I'll do, and I don't know what options will be left after that.

I do a lot of research here, and now have read mostly all of the interesting material these forums have to offer... I have seen no member who seem to share the same symptoms as I, except for sazy and then again I don't think I have ocular rosacea, nor did I ever wear contact lenses... I did suffer from prolactinoma in the past and am still taking medicine for it, so the hormonal imbalance or the drugs for it might play a part, but on my last blood test that my endocrinologist made me do things looked fairly normal...

[irish eyes]

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....I have seen no member who seem to share the same symptoms as I, except for sazy and then again I don't think I have ocular rosacea, nor did I ever wear contact lenses... I did suffer from prolactinoma in the past and am still taking medicine for it, so the hormonal imbalance or the drugs for it might play a part, but on my last blood test that my endocrinologist made me do things looked fairly normal...

Hi Roderirck

I (for one) recognise many of the symptoms you describe.

Isolation can be destructive. Perhaps it's not a kind thing to say but some people actually leave me drained after I talk to them - whilst others make me feel energized. Are you able to seek out positive acquaintances or find something (anything) that gives you some sense of well-being? It's not easy I know but it's worth trying.

Did you get your degree recently? Well done if so. If you can afford to abandon the `ambitious job hunt' for a while then do so. Or perhaps set yourself the goal of submitting 2 or 3 applications a week just for the practice. Job seeking is a great stressor so go easy on yourself with this one.

Don't lose hope.

[Michael2]

my recommendations:

i strongly strongly recommend IPL. although it hasnt cured me, it has made my quality of life soo much better and i even have some moments where my eyes are completely painless and feel totally lubricated.

there were times when my eyes felt like they had glass in them and my lids burned insanely...looking back it seems my inflamed glands were causing a ton of pain not just to my eyes but also my eyelids.

i also recommend finding some type of chronic pain meds. tramadol helped me quite a bit, and benzo's helped me fight the anxiety

[Roderick]

I read that IPL is only for the lower lids, while it's mainly my upper lids that are irritated to all hell. Also read that it's supposed to help the upper ones, but I don't see how when they aren't even touched. I almost don't give a damn about the lower ones.

Anyhow for now I don't have the money to pay 750$ by session + plane fares + hotel fares, I don't see why anyone would have the means to undergo that lest they lived in LA or wherever it is practiced. I know they sure as hell don't do that stuff here. It's going to become a vicious cycle, in that, I can't work so I can't make money to pay for the most expensive forms of treatment against dry eye (IPL and autologous serum if needs come to be), and if I can't treat my dry eye I'll stay an invalid (one that isn't acknowledged by the state, at that) who only has enough money to survive at best and can never put anything aside. The healthcare system in Canada is way too incompetent, not to mention slow as a snail, so provide any kind of adequate treatment for me.

It really scares the crap out of me when I see that every day is worse than the one before. At least if I had a way to stop the pain from growing out of control. At this rate I soon won't be able to use a computer for more than 10-20 minutes straight 3-4 times a day, and thus there goes any chance for me to make any kind of living.

As for pain medication, so far all I've tried is a double-edged sword, in that if I get relief, something else becomes really irritant. And as for the most potent forms of pain medication there's no way in hell I can get one of our moron doctors to prescribe it. That is, after I've waited months for an appointment with him first.

That's another huge problem, delays, delays, delays, waiting, waiting, waiting, all the while just getting through one day and still being sane and somewhat determined the day after in spite of the monstrous pain seems like an incredible feat.

And that's exactly what happened with the last ophto I saw. Two months of waiting just to be told "Oh well you don't have anything bad, I can't do anything for you anyway, tee-hee! Oh I don't want to talk about what's happening to you either. Next!"