Dry eyes from Sjogrens

I had been told I had Sjogrens and having dry eyes. I personally have never felt I had the dry eyes. Never used drops to wet them. However, when I went to my last eye appointment, he suggested I start doing rewetting drops a couple of times a day to keep them moisturized. He could tell on the exam that they were very dry. I still do not notice any difference. In short, what I am saying, is you may have had it but just didn't notice it at times. I think we get used to certain things. When your eyes get overly dry then you notice it more. Just a thought...

Thanks for your thoughts. Unfortunately I have had severe symptoms for many years without a break until the 5 weeks after surgery. Now symptoms have returned. I'm just wondering if there is anyone else out there who has had this experience. It is a mystery to me. Since so little is understood about autoimmune disease, I can only conclude it is some quirk we know nothing about yet.

@lisw I’ve been looking up your situation, so I posted a link to Mayo Clinic’s information. What struck me was the other causes of dry eyes, like a medical condition. Have you ever seen an ophthalmologist for a good exam?
https://www.mayoclinic.org/diseases-conditions/dry-eyes/symptoms-causes/syc-20371863
There are a few other discussions on dry eyes. I will try to find them and post them for you.
Would that be OK?

Sure, thanks. Although I regularly see different ophthalmologists that have found nothing. My experience is that things that are not in the mainstream sometimes get missed. I have a daughter with a rare genetic syndrome that got missed until I found it when she was 17. (Had gone through major birth defect clinics.) They confirmed with more genetic after I insisted that her symptoms fit.

I would suggest that maybe when your knee was removed a source of inflammation was removed. So your levels of inflammation were down. Now, your body has become inflamed again and you’ve reached a “tipping” point and your eyes are flaring again…just a theory. Hope you can find a cause.

Thanks for the thought, but surgery, especially joint replacement, increases inflammation in the body. I had extensive swelling from above my knee to my toes for two weeks. Some still persists. That is why ice is used-- to reduce inflammation.

@lisw here is 1 discussion that I found. You can just ask your question there or respond to others.
https://connect.mayoclinic.org/discussion/sjorgens-syndrome/
How is your daughter doing? I really admire you for being a persistent advocate for her.

@lisw, in addition to the discussion that @becsbuddy recommended to connect with other members who have Sjogren's, you might also be interested in this related discussion:
- How do you deal with dry eyes?: https://connect.mayoclinic.org/discussion/dry-eyes-1/

Interestingly, Mayo Clinic just posted this video with Dr. Dave Patel, a Mayo Clinic ophthalmologist.

Hi, I wrote on another blog somewhere here about dry eyes. I have positive ANA and mildly elevated other autoimmune tests but no true conclusion to be Sjogren’s or Connective Tissue Disease. Have had severe dry eyes for years. I had a test done at my eye doctor to also confirm I sleep with my eyes open which I was told contributes a lot more to dry eyes so for some time now I paper tape them closed, it’s called Nocturnal Lagophthalmos. I also was told about eye drops not covered by any insurance where you give your own blood and the serum is mixed with a saline solution and made into eye drops. This is called Autologous serum drops or ASEDs. I paid 300 dollars for a 3 month supply. I’m in about a month and I’m not sure yet. It feels better but I wake up twice a night and always put in over the counter drops and you can’t while using these. I’m following through for the three months. You put drops in each eye 4 times of day. Take a look at both and see. I never knew I slept with my eyes half open. That was not my main reason going to eye doctor. I went because of how bad my eyes were becoming. They also mentioned after this trial of three months I can try tubes. Best of luck…Joanne

I have been told by my eye doctor I have dry eyes and I use Sustain eye drops twice a day. If I forget the drops my eyes start to hurt (no pain) and I get a headache. As soon as I put drops in, symptoms are relieved shortly after.
My doctor never explained the cause of this,
Also my left eye continuously leaks fluid and blurs my vision. I have had this eye operated on twice and I fear going back to only be told I have to have another operation. The eye specialist once told me I am "a stoner". I did not know what she meant but then told me when my left eye feels gravely that my eye duct is blocked. I am suppose to go every 6 months to have her check the eye duct. I have been to this doctor many times and do not feel she is helping me so I have not returned. She is an ophthalmologist.
Anyone else experience this. Thank you