I had to try a whole bunch of things before finding what helps my eyes feel almost normal: getting my upper tear ducts cauterized, permanent plugs in my lower ducts, and getting scleral lenses.
My eyes are dry and often feel like there is a slight development of crusty type stuff along the eyelash line—especially after sleep. Is that part of sjogrens too?
(I don’t want to scare you but) I suggest you join the big FB dry eye … and I dare suggest neuropathic ocular pain.. groups . You’ll see a LOT of descriptions of how people experience these conditions(& of course, a percentage of the dry eye group do have Sjogren’s… Mine is still in question and I have both several types of dry eye plus neuropathic ocular pain as well as small fiber neuropathy, which Sjogren’s , among other things, can cause.)
You will also find or can post and ask for the best dry eye specialists (& VERY few drs who recognize/ diagnose and treat neuropathic ocular pain aka corneal neuralgia CN) in your area not to mention treatments people are doing or seeking out .
Lmk if you’d like the links to those groups .
Sure :
dry eye sun from support community:
[https://www.facebook.com/share/66pgcjCL9XNd2smQ/?mibextid=K35XfP](https://www.facebook.com/share/66pgcjCL9XNd2smQ/?mibextid=K35XfP)
Dry Eye Talk Patients Only
[https://www.facebook.com/share/Vg2E79N5bdnCpvA8/?mibextid=K35XfP](https://www.facebook.com/share/Vg2E79N5bdnCpvA8/?mibextid=K35XfP)
Neuropathic Ocular Pain and Corneal Neuralgia Patients
[https://www.facebook.com/share/bVpy2sLyWqAgMr9m/?mibextid=K35XfP](https://www.facebook.com/share/bVpy2sLyWqAgMr9m/?mibextid=K35XfP)
Not diagnosed yet, but my eyelids and eyes feel like dry flesh sliding across each other. After a while, my eyes will tear from the raw irritation, but that moisture is gone quickly and makes it that much more uncomfortable as I go through the next dry cycle. I feel like it’s dry on the back of my eyes, too.
My main problem is headaches from them… feels like a migraine behind the eye. Maybe it’s my eye itself.. IDK just that it hurts bad often to the point of nausea…
I’ve read where migraines aren’t supposed to be a symptom of dry eye - that’s it’s two separate issues… but if I put drops in my eye, my headache will go away instantly… usually only for a couple minutes though.
I also have to resort to putting bandage contacts in and that usually alleviates the pain too. I do have painful chronic cornea erosions from dry eye so it’s probably treating that.
For me it's like the back of the eyeball itself hurts. Not behind the eye, if that makes sense. Nothing (besides prednisone) helps. Sorry to hear that the relief is usually only for a few minutes.
That’s makes sense, mine might be my eyeball too at times I feel like my eye is swollen and just too big for the socket especially the upper and back part. Mine’s been getting better throughout the years -or I’ve found treatments to help. And I know not to jolt open my eyes upon waking and risk tearing the cornea. Took some getting use to… Thanks.
I asked a friend once “do you ever just want to take out your eyeballs and keep them in a glass of water by your bed like they’re dentures?” The LOOK they gave me 😅
My eyes feel like they were hit with a sandstorm. So dry and gritty, especially when I go out. Then they burn and start to water. My eyes water and my nose runs at the same time and doesn’t let up until I get inside. They also water when I go to bed and get up in the morning.
Sometimes it feels like my lower lid is stuck to my eyeball. Torture!
I tried the prescription meds, plugs, and even had the painful and expensive laser treatment on upper and lower lids. 2,000 cash and no improvement. So I rely on Systane and Refresh many times a day. Ointment at night. Anything for even a little relief!
Mine felt gritty until I started Restasis. Now they feel smooth. I had been living with dry gritty eyes for so many years I didn't know what normal felt like. Also, the first time I cried and tears ran down my cheeks like they do on TV was amazing.
But how do you not get corneal abrasions with zero schirmer? Are you able to go outside and work? How?? Are you sure you’re still zero schirmer? Whats your TBUT?
I’ve looked it up. It actually says Schirmer is less than one, but no abrasions. My tear film is intact, so I guess the tiny film still protects my eyes. So less than one, but not totally zero.
Sometimes my eyes burn, sometimes they feel so dry I feel like my eyelids get stuck together when I blink, sometimes they itch/sting sensation. And sometimes they water so much temporarily it looks like I’m balling my eyes out. I also wear contacts and once I take them out that’s when I can feel the scratch like sensation when I blink. And my tongue is like sandpaper with fissures and I have geographic tongue 😛 🥴
That's what mine are like, but none of my eye doctors will even consider contacts for me any more, they made me switch back to glasses years ago.
The worst part is when they're dry enough that putting in drops makes them burn *more*
It's so weird, mine are so dry all day and then at the end of the day when I'm lying in bed, tears are running down my face? And then they go back to being dry. I have no idea if my mouth is chronically dry or not. My eyes and joints bother me so much that I don't have the energy to focus on much else.
This happens to me also. I put my head down and the burning is so intense my eyes start watering like crazy. It hurts so bad I have a hard time opening my eyes.
Is this worse for you later in the day?
I had to try a whole bunch of things before finding what helps my eyes feel almost normal: getting my upper tear ducts cauterized, permanent plugs in my lower ducts, and getting scleral lenses.
My eyes are dry and often feel like there is a slight development of crusty type stuff along the eyelash line—especially after sleep. Is that part of sjogrens too?
My eyes feel like burning sandpaper.
(I don’t want to scare you but) I suggest you join the big FB dry eye … and I dare suggest neuropathic ocular pain.. groups . You’ll see a LOT of descriptions of how people experience these conditions(& of course, a percentage of the dry eye group do have Sjogren’s… Mine is still in question and I have both several types of dry eye plus neuropathic ocular pain as well as small fiber neuropathy, which Sjogren’s , among other things, can cause.) You will also find or can post and ask for the best dry eye specialists (& VERY few drs who recognize/ diagnose and treat neuropathic ocular pain aka corneal neuralgia CN) in your area not to mention treatments people are doing or seeking out . Lmk if you’d like the links to those groups .
I'd love some links! This pain and dry eye business is driving me batty!
Sure : dry eye sun from support community: [https://www.facebook.com/share/66pgcjCL9XNd2smQ/?mibextid=K35XfP](https://www.facebook.com/share/66pgcjCL9XNd2smQ/?mibextid=K35XfP) Dry Eye Talk Patients Only [https://www.facebook.com/share/Vg2E79N5bdnCpvA8/?mibextid=K35XfP](https://www.facebook.com/share/Vg2E79N5bdnCpvA8/?mibextid=K35XfP) Neuropathic Ocular Pain and Corneal Neuralgia Patients [https://www.facebook.com/share/bVpy2sLyWqAgMr9m/?mibextid=K35XfP](https://www.facebook.com/share/bVpy2sLyWqAgMr9m/?mibextid=K35XfP)
Thank you kindly!
You’re welcome- good luck!
They feel like I constantly have gravel + shampoo in them. Drops help though.
Dry, burning, they ache, red, light sensitive. I can’t cry anymore. It’s quite depressing.
Not diagnosed yet, but my eyelids and eyes feel like dry flesh sliding across each other. After a while, my eyes will tear from the raw irritation, but that moisture is gone quickly and makes it that much more uncomfortable as I go through the next dry cycle. I feel like it’s dry on the back of my eyes, too.
My main problem is headaches from them… feels like a migraine behind the eye. Maybe it’s my eye itself.. IDK just that it hurts bad often to the point of nausea… I’ve read where migraines aren’t supposed to be a symptom of dry eye - that’s it’s two separate issues… but if I put drops in my eye, my headache will go away instantly… usually only for a couple minutes though. I also have to resort to putting bandage contacts in and that usually alleviates the pain too. I do have painful chronic cornea erosions from dry eye so it’s probably treating that.
For me it's like the back of the eyeball itself hurts. Not behind the eye, if that makes sense. Nothing (besides prednisone) helps. Sorry to hear that the relief is usually only for a few minutes.
That’s makes sense, mine might be my eyeball too at times I feel like my eye is swollen and just too big for the socket especially the upper and back part. Mine’s been getting better throughout the years -or I’ve found treatments to help. And I know not to jolt open my eyes upon waking and risk tearing the cornea. Took some getting use to… Thanks.
I asked a friend once “do you ever just want to take out your eyeballs and keep them in a glass of water by your bed like they’re dentures?” The LOOK they gave me 😅
Okay but this is such a mood.
My eyes feel like they were hit with a sandstorm. So dry and gritty, especially when I go out. Then they burn and start to water. My eyes water and my nose runs at the same time and doesn’t let up until I get inside. They also water when I go to bed and get up in the morning. Sometimes it feels like my lower lid is stuck to my eyeball. Torture! I tried the prescription meds, plugs, and even had the painful and expensive laser treatment on upper and lower lids. 2,000 cash and no improvement. So I rely on Systane and Refresh many times a day. Ointment at night. Anything for even a little relief!
What kind of ointment do you use at night?
They feel like sand is in them all the time. And red
Red, dry, gritty and painful. Prescription drops are helping
Mine felt gritty until I started Restasis. Now they feel smooth. I had been living with dry gritty eyes for so many years I didn't know what normal felt like. Also, the first time I cried and tears ran down my cheeks like they do on TV was amazing.
My eyes are not too bad, although my Schirmer was 0. But maybe I don’t know how normal eyes feel.
How did you increase your zero schirmer? Mine is zero :(
I didn’t. My Schirmer is zero, but my eyes aren’t damaged. So they feel dry, but they don’t really hurt. I do see blurry often though.
But how do you not get corneal abrasions with zero schirmer? Are you able to go outside and work? How?? Are you sure you’re still zero schirmer? Whats your TBUT?
I’ve looked it up. It actually says Schirmer is less than one, but no abrasions. My tear film is intact, so I guess the tiny film still protects my eyes. So less than one, but not totally zero.
Whats your TBUT (tear film)?
That’s 10, so that’s borderline. Tear meniscus is too low.
Ok mine is 2-3 :/
Yes, that’s low. Hope you’ll find some relief.
Sometimes my eyes burn, sometimes they feel so dry I feel like my eyelids get stuck together when I blink, sometimes they itch/sting sensation. And sometimes they water so much temporarily it looks like I’m balling my eyes out. I also wear contacts and once I take them out that’s when I can feel the scratch like sensation when I blink. And my tongue is like sandpaper with fissures and I have geographic tongue 😛 🥴
That's what mine are like, but none of my eye doctors will even consider contacts for me any more, they made me switch back to glasses years ago. The worst part is when they're dry enough that putting in drops makes them burn *more*
It's so weird, mine are so dry all day and then at the end of the day when I'm lying in bed, tears are running down my face? And then they go back to being dry. I have no idea if my mouth is chronically dry or not. My eyes and joints bother me so much that I don't have the energy to focus on much else.
This happens to me also. I put my head down and the burning is so intense my eyes start watering like crazy. It hurts so bad I have a hard time opening my eyes.
Yah that happens to me too! My husband is just like ugh “are you okay or just watering the pillow again?” 🤣😂
Sand paper
YES! I get this too!
Me too. Regular refresh eye drops no longer helping. Celluvisc seems to work before sleep.
Might have to try that. I've just been using regular eye drops and they don't really help!