Those with Dry Eyes as the Worst Symptom

[felpeyu2]

Hi. I regret to say that I have no solution for your severe dry eyes, but I know quite well your problem with your eyes because I had exactly the same symptoms several years ago. And I was thinking about the similarities of some issues that you describe.

For instance, when you refer to "in my late 20s after a 6-week battle with mono", are you talking about mononucleosis? Because I had mononucleosis in my 20s and I think it was the thing that triggered my Sjogren.

About the eyes: several years ago I had the symptoms you describe: the eyes at night was sticked to the eyelids and when I moved or tried to open them, there was a painful rip. About two or three more hours sleeping it happened again. And the next day my vision was blurred. It lasted about two or three months. And it happened again the next year. I think it was triggered by my allergy to pollen. Nothing really worked for me during the night to avoid this problem those years ago.

The only change that I did (and I actually do) was using my dropeyes during all the day. Because I had my eye problems at night, I tried to stop the problem using tears or gesl only at night (during the day I did not feel any problem with my eyes). And because I did not have the problem during the day, I did not use drops during the day. But I read that it was important that the eyes were always moistured in order to avoid very tiny erosions, so I started to use eyedrops during all the day.

I do not have at now this problem, but I really do not know if the key was the use of eyedrops during the day or the word lucky.

P.D: it is important to say that I have Epithelial basement membrane dystrophy (EBMD), also known as map-dot-fingerprint dystrophy and Cogans's microcystic dystrophy, that is a disorder of the eye that can cause pain and dryness. The "rip" that you talk about when the eyes sticks to the eyelids, in persons with EBMD I think it is because the different layers of the cornea are binding together in a weak way and the stickness cad break them apart.

P.P.D: my corneal erosions and my EBMD were diagnosed in my 30s, two years before my Sjogren diagnosis. My sticky eyes happened about 5 years after my Sjogren diagnosis.

[Wal]

I use the thera pearl eye mask not a wash cloth as its too much trouble. You can purchase the eye mask at most stores like Target or Walmart. You hear it in microwave and wear it for like 10min or something. Then you must age the lid in a certain way. I had no symptoms of blaryphritis (sp?) but I still have MGD that was detected in a special test that took like an X-ray of the lid. Regardless the retain drops and eye mask have helped wonders!

[Suslew]

Hi,
I didn't read thru all the responses so if I'm repeating something already mentioned, I apologize.

I just saw a Sjogrens/dry eye expert in optometry and I have Filamentary keratitis so she has just recommended a bunch of things for me.

OTC-  Muro 128 ointment for at night, helps protect the cornea.
          A supplement called HydroEye soft gels. Take 2 pills morning and evening, it will take a while to work
         An eye drop called Oasis (I really like these)
         Tranquilizer moisture goggles
         All of these are available on Amazon.

Prescriptions - Xiidra and a prescription eye wipe that starts with an A...I will get delivery tomorrow, but I mention this because more than the prescription eye wipe is the mention that people with dry eyes need to use good eyelid hygiene. Try looking it up, I think you can wipe your eyelids using baby shampoo. Maybe someone else can chime in.

She also wants me to use warm compresses over my eyes 2x per day for at least 5 minutes.

Just passing on the new knowledge. I hope you find some relief!

[tiredndryinTN]

I don't know why I'm bothering to post. I guess I feel like I need to whine a while and get this all out in writing to sort through what I've gone through and where to go now.

I got the warm compresses. No help.
I took MaxiTears for 6 months. No help.
I took MaquiBright for 4 months. No help.
I took lots of vit C and collagen. No help. Ok. Maybe a teensy energy help but the eyes are as evil as ever.
I have night goggles. I still use them but No help.

I went to a dr.
Thyroid labs (T3, T4, and thyroid antibodies). Normal.
Immuno labs including SSA, SSB, ANA, ESR...Normal

I'm now taking Pilocarpine as a bandaid while I wait for hormone labs to be commented on by DR (been waiting over a week) and for the DR to arrange my adrenal function labs.

I still have to get up 4-5 times a night to reapply ointment and drops. Despite the goggles, I wake with every square cm of my eyelid adhered firmly to my cornea. Most nights I wake in time. At least once or twice a week I do not and get an abrasion or an erosion.
Now in addition to the Raynauds, Chronic Fatigue, and dry mouth, eyes, and sinuses, I'm getting joint pain and nightly foot cramps.

Next step is a Rheumy referral, IF I can even get someone to treat what Dr and I think is seronegative Sjogren's.
I'm about to seriously contemplate driving an hour away to see a functional medicine practitioner which isn't covered by insurance, and do the AIP diet and the leaky gut dance, as my deductible is so high, I can't afford the biologics or steroids the rheumy would prescribe. The pilocarpine is $102/month as it is. And it doesn't work all that well for my eyes when I need it to.

I just don't know what to do. And I'm desperate and exhausted. The new symptoms are disheartening. They started about 1.5 weeks before I started with the pilocarpine. Some nights I don't have time to worry about corneal erosions because my feet start to cramp every time I fall asleep. (I do take magnesium.) I'm so frustrated.

I want to order some adaptogens, as I'm convinced there is an adrenal component considering I flare after 5pm to about 9 or 10 a.m. everyday. But I have to wait until the cortisol test is set up before. Meanwhile, while the DR sleeps peacefully and blows off my bloodwork and phone calls, I continue to experience heck, and I know heck looks like my constantly interrupted attempts at achieving healing and rest during the dark hours. For a year and 4 months now.
Le sigh...

I'll address my lingering issues with the Eye Dr when I go for my annual exam. But they can't do much more than to plug the upper ducts too.

Pardon my whines.
I know you all relate.
I was hoping I'd glean insight from writing it down, but it just is what it is. Sorry. 

[SunshineDaydream]

Dry eyes have been my worst symptom the whole time I've had SS. Last month I got bottom punctal plugs and it didn't help much. The next week I got the top plugs, too, and it has made a world of difference. Hopefully you'll have the same experience.  Here's a recent thread on topic. https://sjogrensworld.org/index.php?topic=30201.0

What kind of magnesium are you taking? Magnesium glycinate is supposed the be the most bioavailable. I like Kal brand, and others report good results with Doctor's Best brand. Potassium might also help with the leg cramps.

I hope you can see a rheumatologist soon.

[DarleneB]

I see you are seronegative...so was I.   But they have a new test and I came back positive  ...called EARLY SJOGRENS SYNDROME PROFILE.

My eye doctor put punctual plugs..upper and lower...wonderful.. I actually have tears some days I wipe away.   I use restasis eye drops...

Most important is evoxac 30 mg three times a day....this gives me SPIT....this is my most important drug I take