Chronic Illness - AIP, Self-Management

I Have Sjogren’s Syndrome And This Is How I Deal With Severe Dry Eyes

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I struggle with Sjogren Syndrome and dry eyes are a constant challenge. One of the perks of having a chronic illness (like rheumatoid arthritis), is that these illnesses rarely come alone. Enter: Sjogren syndrome.

I thought extreme thirst and dry mouth were annoying… wait until you have to deal with severe dry eyes. It ain’t no walk in the park.

Dry eyes may sound like a small enough problem to have, but it’s not, and it can affect your life in ways you can’t fathom. Imagine dreading nights because you know how dry and painful your eyes will get during the night. Imagine waking up in the morning with your eyelids stuck to your eyeballs, or even being afraid to open your eyes when you wake up because you anticipate the pain and discomfort.

Believe me, dry eyes can almost drive you mad after a while.

Fortunately, over the last few months, I discovered ways to deal with my extreme dry eyes symptoms and ease the discomfort. And when I think of the fear and worry I went through and still experience today, I thought I’d share these tips here.

For months I felt so alone! But there are a lot of people who suffer from severe chronic dry eye issues. People with Sjogren’s syndrome, like me, but also people who’ve had cataract surgery or other types of eye surgeries, blepharitis, episcleritis, etc.

So anyway. If you feel like you’ve tried every product on the market or have tried multiple eyedrops and feel like nothing has worked for you, you might find something here that will help you with your severe dry eye issues.

Or perhaps you have something to add to this list? If you do, please consider sharing it in the comments. It might make a big difference in someone else’s life.

Disclaimer

As always, I would like to remind you that I’m not a doctor and have no medical training. I only share here my experience regarding my own mental and physical health journey. The information contained in this blog is not intended to diagnose or treat any medical condition. Please consult your doctor or other medical experts about your health, especially before making any drastic changes to your diet. Thank you!

Now, before we dive into my tips for dealing with severe dry eye symptoms, let’s clarify a few things…

What is Sjogren’s syndrome?

Dry eyes are part of Sjogren’s syndrome symptoms, but I didn’t know that. And what is Sjogren’s syndrome, you might ask?

According to the American College of Rheumatology:

“Sjogren’s syndrome is a systemic autoimmune, rheumatic disease that affects the entire body. The most common problems are dry mouth, dry eyes, fatigue, and musculoskeletal pain. However, other potential complications include other areas of dryness, internal organ involvement, neurological complications, and lymphomas”.

In other words, Sjogren makes you dry and thirsty like you never thought you could be.

When I wake up in the morning, it feels as if my brain has completely dried out and is now stuck to my skull. My brain feels like a dried plum. I’m so thirsty I can’t even think straight.

severe dry eyes home remedies
Image from Canva

And now… I have dry eyes (sigh).

Like, extremely dry eyes, to the point where I couldn’t work on the computer for almost 4 months. Talk about a limiting disease.

How severe dry eyes can affect your life

The funny thing is, I didn’t even know dry eyes were a thing. Even as my left eye kept bothering me more and more (at first, I was experiencing discomfort only in my left eye), I didn’t realize I had dry eyes.

That’s why for 5 years I struggled with various symptoms (described below), and never even thought of dry eyes. When, a few months ago, my fantastic optometrist* mentioned that I might have chronic dry eyes due to Sjogren’s, I discarded the possibility without even giving it a second thought. I literally told her: “I don’t have dry eyes!”.

*She’s the only one who figured out it was dry eyes and gave me a prescription for eye drops. I just stored it away with all my other medical papers.

Dry eyes can be debilitating

Then about 3 weeks after seeing her, my eyes got 1 000 times worse, very suddenly. It happened one evening, as I was watching a movie: my eyes had been feeling tired and irritated all day, and suddenly, in a matter of seconds I felt my eyes quite literally burn. As if someone was using a laser on them.

The pain was so intense I panicked a little. I shut down my screen and closed my eyes, but the pain didn’t go away. In the end, I spent 2 weeks like this, eyes closed, indoors, not being able to look at anything, and incapable of looking at a screen. I spend almost a month in the dark, constantly wearing sunglasses when going out and even in the house, and an eye mask at home.

But that’s not the worst part. The worst part is that my eyes never recovered after that.

I spent the next 4 months still unable to work on a computer and look at a screen, not to mention in constant pain and discomfort. My eyes were painful even in my sleep, but also particularly in the morning.  

I was also unlucky enough to land on the world’s worst ophthalmologist, ever. He told me virtually nothing (his exact words were: “I’m a retina specialist and there are no problems with your retina, what else do you want me to say”. I’m skipping the parts where he was rude), and I went home crying.

Things began to look darker in my mind: I kept wondering how I would ever work, if there had been damage done to my eyes, if I would eventually lose my vision and go blind, if I would die alone and poor under a bridge… You know. Just your regular self-pity, I’m gonna die alone internal discourse.

Fortunately, I’ve learned how to not let things get too dark. And my mom, although far, far away, still managed to give me some emotional support. It helped a lot (Thanks mom!).

But still. It was not a fun period.

Turns out, all of this was a result of severe dry eyes

Around that time, I started using the eyedrops my optometrist had suggested. Although they helped a little (but barely), they didn’t make a big enough difference for me to realize that the symptoms I had been experiencing were due to severe dry eyes.

I know that now because I eventually found the right eye drops. But up until a couple of weeks ago, I just thought my eyes were “broken”. I thought I would never get my eyes back, and was worried I would never be able to work again, earn money, pay my bills, retire…

(I’m still not sure if I ever will recover, but that’s not the point of this post).

What are the symptoms of chronic dry eyes?

Chronic dry eyes symptoms are a challenge because they don’t necessarily feel like dryness.

Extreme dry eyes can be, frankly, debilitating but the worst part is not even knowing you have dry eyes. I spent 5 years experiencing discomfort in my left eye, and then later both eyes, before finally finding out I had severe dry eyes.

That whole time, it didn’t feel like dry eyes; it just felt like pain, discomfort, and eventually a few years later, like someone was rubbing my eyeballs against sandpaper. (No, I’m not exaggerating).

The only reason my optometrist finally suggested it was dry eyes, was because my autoimmune conditions (rheumatoid arthritis and Sjogren’s syndrome) had finally been diagnosed. It wasn’t the first time I was talking to an ophthalmologist and optometrist about my eye issues….

Reminder: I’m not a doctor so I’m not sharing a medical point of view here. I will simply list the symptoms I experienced for 5 years, in the hope that it might help you detect your chronic dry eye symptoms sooner rather than later. 

So here are the symptoms I experienced, before knowing that it was severe dry eyes

  • Extreme sensitivity to light;
  • A constant feeling like there’s a lash in my (left) eye(s);
  • I always ‘felt’ my left eye. Constantly.
  • It felt like I had “air” in my eyeball, like a constant feeling of pressure in the eye;
  • My eyes burned, often. You know, as if I had not slept in 36 hours and had spent that whole time staring at bright light.
  • My left eye constantly felt tired, smaller, and almost dimmed compared to the right eye;
  • It reached a point where one day, out of nowhere while watching a movie, both my eyes felt as if they had been suddenly burned. Literally, burned. I could no longer look at anything, let alone a screen or just any sort of light (natural light, lamps, etc.). I spent 2 weeks with an eye mask, closed up in my house, curtains pulled 24/7. I could not use the computer for 4 months (until I finally found the Thealoz Duo Gel drops, and all the other things I talk about in this post).
  • My eyeballs and eyelids feel almost stuck together, especially in the morning when I wake up. Maybe that’s just me but boy, can this make you freak out.

If you keep experiencing discomfort in your eyes, check out this article. I wish I had come across this information sooner, before wasting my money on specialists who did not tell me a thing.

Now, I’ll have to go down that road again but armed, this time, with my own research and conclusions.

What can you do for severe dry eyes?

There are certainly more drastic procedures or treatments for extreme dry eyes (like closing your tear ducts), but it’s not what I’ll be discussing here. I will only discuss the simple home remedies I found, and general tips, habits, and lifestyle changes I made that have helped my dry eyes, and are allowing me to slowly go back to work again.

I would like to remind you that I’m not a doctor. I’m just a girl on the internet, sharing her struggles and small wins. As always talk to your doctor before trying anything that could impact your health.

Please note that I am not an affiliate for any of the products I mention here. If they are on this list, it’s because they worked for me.

Ok, on to that list! Here are all the things I did to help with severe dry eyes as naturally as possible. P.S. #6 and #8 have been life-changing.

1. Omega-3 fatty Acid supplements

I tried this in sheer desperation. I had not yet discovered the right eye drops and was still struggling a lot, until one day, this caught my eye.

omega 3 for severe dry eyes
NutraSea Dry Eye supplement

Mind you, it was expensive. More than $60 when you include taxes (but don’t forget shipping!).

But, I’m glad I tried it.

As it turns out, research suggests that taking an omega-3 fatty acid supplement can reduce symptoms of dry eyes. I didn’t know that, but now that I’ve tried it, it feels true enough.

I started taking the NutraSea Dry Eye supplement (in liquid form) about a month ago, at night before bed. I’ve felt some improvement, especially in the morning when I wake up, as soon as I started taking it.

The best part is, it tastes good enough and is unsweetened (so, still compatible with my anti-inflammatory diet).

2. I stopped washing my face with soap

This one is surprising. Especially since I only use very little soap on my face. I talk about my super minimalist routine for glowy skin here.

But I noticed that whenever I washed my face before going to bed, my eyes were a lot drier and more uncomfortable during the night and the next day.

Trust me, when your eyes are as dry as mine, even the slightest improvement can make a big difference in your life. No longer washing my face with soap was one of those weird changes that made a difference for me.

Now I clean my face with water or I soak a reusable cotton pad with rose water and sesame oil and gently rub my face with it.

I can do this because I don’t use any makeup but remember to adapt this formula to your own reality and needs.

3. Get enough sleep

Not getting enough sleep makes my severe dry eye symptoms even worse. I need at least 8 hours of sleep at night. If not, the pain and discomfort will be almost unmanageable.

how to deal with dry eyes
Credit: Canva

It’s also important to give my eyes enough rest periods. I cannot do 16-hour days where I go in and out of places with artificial lighting, wake up at 6 am, work all day then go out to restaurants or bars until late at night, staring at screens or people, and keeping my eyes open for hours and hours. (Not that I go to bars or restaurants late at night, but you get the point).

My old eyes need sleep and rest. Short days are necessary, sleep is non-negotiable, or the pain and discomfort will worsen.  

4. Go outside after waking up

When it comes to uncomfortable dry eye symptoms, mornings are the worst for me. However, I’ve noticed that if I go out for a brisk walk not long after waking up, my eyes feel a lot better.

I don’t know if it has to do with exposing my eyes to natural light, getting oxygen in my brain (I walk for at least 30 minutes but it’s more like 1 hour every morning), or getting away from the heated apartment… but once I spend some time outside, my eyes feel better throughout the day.

credit: Canva

I cannot start my days without going out first thing in the morning. If I don’t, my eyes bother me too much and I have trouble functioning.

5. Eye yoga

I won’t get into what eye yoga is here. Maybe in another post.

But I do my exercises in the morning before or during my walk outside. And a few times throughout the day and it helps ease the discomfort associated with dry eye disease.

This video introduced me to the whole concept and I still do some of the exercises she teaches in there. But it’s still something I’m exploring more and more, so I might talk about it again, in a later post.

6. Finding the right eye drops: Thealoz Duo Gel + HydraSense Ultra night

I’ve tried countless eyedrops and they’ve all been rubbish. Even Hylo Forte, which so many people on the internet seem to swear by, did nothing for me.

HydraSense Ultra Night gel drops were the first drops that gave me some relief, although it wasn’t anything major. Even the Ultra version, that’s supposed to have the same concentration of sodium Hyaluronate (0.3%) as the Ultra night, doesn’t do anything for me. If anything, it makes my eyes even drier (?) I use HydraSense Ultra Night gel drops in addition to Thealoz’s.

eye drops for extreme dry eyes
Credit: Thea

But the real life-change has been Thealoz Duo gel. OMG. Only once I started using these eye drops did I slowly began to get my life back. Not entirely, (the real deal happenend at #8. Keep reading). But still…

For the first time in months, I was able to work on a computer (a little), sleep, go outside… I no longer woke up in pain in the middle of the night, and my eyes were still slightly hydrated in the morning.

However, Thea is a French brand (I think) so I can only order my drops online; they are pretty expensive (almost $50 for 1 box/30 days, when you include taxes and shipping fees). They also come in single-use plastic containers, as they are preservative-free, just like the HydraSense drops.

best eye drops for severe dry eyes

Another thing I’m learning: dry eyes are expensive.

BUT, Thealoz Duo gel eye drops are the only ones that work for my dry eyes so far. And, to be honest, I’m just grateful they even exist. So, for me, it is worth it!

I use Thealoz’s drops at night and in the morning, and during the day I use HydraSense Ultra Night gel drops.

7. Never look at a screen unless necessary (yep, no more movies)

As I mentioned already, now I find it very difficult to work on a screen (Edit: it got better when I discovered #8).

Since I still need to, you know, earn a living, I limit my screen time to what is absolutely necessary.

Also, I recently bought a home printer to help reduce my screen time. I’m not one to buy electronic stuff, but I thought it would help me spend less time reading things on the screen.

I can’t wait for someone to create computer screens without backlighting. Like the paper laptop from Modos, but that’s still a prototype.

But, yeah. No more movies for me. It’s fine; I’ve embraced the wonderful world of audiobooks. If you haven’t, consider listening to the Percy Jackson series on Audible, Harry Potter read by Stephen Fry, or other dramatization audiobooks: they are awesome!

Still, sometimes I miss just going to the movies with friends.

8. Eye ointments

I’ve only recently discovered eye ointments. Using an eye ointment, along with the Thealoz Duo gel, has been a true game-changer for me when it comes to alleviating my extreme dry eyes symptoms.

Once I started applying ointment at night, my cornea slowly began to heal. After a week or so of daily application, I began to feel considerably better and experienced at least 80% less discomfort in my day-to-day life.

My eyes were a lot less dry in the morning, and I could work on a computer again! (I won’t spend 12 hours staring at a screen but still, I can spend a lot more time working than I previosuly could.

How to apply eye ointment?

Eye ointment application can be tricky. They come in a greasy, semi-solid form. I didn’t know that. The first time I tried using an eye ointment, pressed the tube, and saw a hard gel coming out, I was kind of shocked.

I couldn’t figure out how to use it; I even cried a little.

I said “a little”!

Trouble is, I didn’t know what eye ointments were! I had only bought one on a whim, after reading one or two comments on the internet where users described symptoms similar to mine and mentioned that their doctor had prescribed an ointment.

And so, I struggled with how to apply eye ointment at first, but then I found this video.

How I use eye ointment

I use eye ointment once per day, at night only. I start by washing my hands (and I do it before each step listed below). Then I:

  1. Start with the Thealoz Duo Gel drops. Wait for 30 minutes, preferably with my eyes closed.
  2. Then I follow with the HydraSense Ultra Night and wait for another 20-30 minutes.
  3. And I finish with the Bausch + Lomb Eye ointment and keep my eyes closed for the rest of the night.

In the morning, I start by washing my eyes with water, to remove any residue left from the drops and ointment. Then I begin the day with Thealoz Duo Gel, wait 30 minutes, and follow with HydraSense Ultra Night, and I’m good for the day.

Ever since I started using eye ointments, when my eyes feel dry during the day, I can get away with only using HydraSense’s regular eye drops (while still following everything else mentionned on that list).

Bausch + Lomb Night Time Ophthalmic Ointment

What’s the best eye ointment for dry eyes?

I’ve only tried one brand so far: Bausch + Lomb (formerly Duolube) Night Time Ophthalmic Ointment. I’m surprised at how well it works! However, and although it is preservative-free, the first 2 applications did cause me some irritation.

Probably because my eyes had to get used to it (?)

Now it doesn’t bother me anymore, as long as I don’t put it deep inside my lower eyelid.

Next, I plan on trying Candor Vision’s Ocunox, to see how this one works for me.

What else…?

Everything I’ve mentioned here helps soothe my dry eyes but keep in mund that there are also things that make my dry eyes worse:

  • Intense, electric heating;
  • Not getting enough sleep;
  • Not putting thick, gel-like eyedrops before bed;
  • And staring at a screen for hours. I’ve set a limit of 4-5 hours per day, 4-5 days a week now. I’m still trying to see how this works out.

That’s it! That’s all the tiny little home remedies and little tricks I’ve found to help with dry eyes. Do you have anything you’d add to this list?

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About Steph

I am a personal growth/self-management enthusiast. I was able to completely transform my life using everything I share here. I hope this blog helps you transform yours as well.
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