Author Topic: Eyes  (Read 3385 times)


  • Guest
« on: October 13, 2010, 12:45:38 PM »
Does anyone else ever get a burning sensation in their eyes?  To me, it has always felt like the oil from my face has somehow gotten into my face, and that's what was burning my eyes, but now that I'm being tested for Sjogren's, I wonder if this burning sensation has nothing to do with my face oil, and is rather a symptom of Sjogren's.  The best way for me to treat it is putting a warm wash rag over my eyes.

Also, does anyone remember the time before they started having dry eyes?  Not to long ago, my eyes would water so much, now they are drying up.  It was beginning to get uncomfortable to watch movies because they would water so much.  Looking back, I can't help but to wonder if it was some sort of a warning sign or something.

I just keep thinking of what I've done that could have possibly brought this on.  I'm an identical twin, and we've led rather identical lives, and now I possibly have this condition, and my sister doesn't, so it makes me feel like it's something I've done personally that she hasn't and maybe if I think long and hard enough, all of this could be figured out and go away......

Prairie Gal

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Re: Eyes
« Reply #1 on: October 13, 2010, 01:33:42 PM »
DreamBig, my eyes used to burn a lot, but now it happens only rarely because I've been treated for Sjogren's since late 2001.  Using warm damp cloths over your eyes does make them feel more comfortable temporarily.

Do you use eyedrops of any kind?   There are a number of brands at the drugstore that will help make you more comfortable (Systane is my current favorite).   Some take a supplement with flax seed oil and/or fish oil because these help your eyes overall -- more Omega 3s.

If you haven't already seen an opthalmologist, please make an appointment because if your eyes get too dry, the corneas can be damaged.  He/she can assess just how dry your eyes are.

Have you seen a rheumatologist?  A rheumy is the one who prescribes Plaquenil, the most-common drug for slowing down the progression of SjS symptoms.

And it's nothing you did; you and your twin may have lead almost identical lives, but she just doesn't have this problem.  You do, though, so I encourage you to get treated.


  • Guest
Re: Eyes
« Reply #2 on: October 13, 2010, 01:45:46 PM »
Hi Dream-

Speaking about the beginning of dry eyes and remembering your eyes before "this" started.  I am a little different in that I had Lasik surgery and that was the beginning of my dry eyes.  It started pretty much with a bang about a month after. That was 11 years ago. 

Your watering eyes before the dryness could have been involved in the process.  It sounds like it was "reflex tearing" which is like when the wind blows in your eyes, or you have something in your eye.  The tears are not healthy tears.  You should see an eye dr and keep your eyes comfortable with artificial tears w/o preservatives.

My husband is an identical twin.  Your sister will not necessarily get SJS.  My husbands brother passed about 10 years ago because of an aneursym.  My husband also had one, didn't know it, and it was caught in time.  They also shared gout, (arthritis in the feet.)  She will at least be aware to watch for symptoms.  Lucy


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Re: Eyes
« Reply #3 on: October 13, 2010, 02:43:44 PM »
Yes I remember before my eyes became so dry and I would have one eye that leaked tears down my cheek for days on end.  After that ended, I would get the burning and my eyes would just slam shut, no matter where I was or what I was doing.

LDN, Plaquenil, Evoxac, Prednisone, Restasis..
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  • Guest
Re: Eyes
« Reply #4 on: October 13, 2010, 04:29:15 PM »
it started a little with my mouth-had a salivary gland removed.. didnt think much of it.. the specialist didnt say anything..
then my eyes would tear up a lot .. i had trouble keeping my eyemakeup would get runny... then about 9 months after
my mouth surgery..whammoo.. my eyes killed me ..i stopped wearing contacts..put on the glasses and ran to my doc.. after 4 visits and
2 docs i was diagnosed with sjogrens... ever since my eyes hvae gotten progressivley worse.  they burn so bad at times.. i did have about
an 8 month break last year --i guess it was sort of a 'remission' that you all speak of... i would only have to use drops in the morning andnight-while
still having plugs in.. however, it came back and boy with a vengeance..i had to quit my job


  • Guest
Re: Eyes
« Reply #5 on: October 13, 2010, 05:00:42 PM »
My eyes are in horrible shape.  My eye doctor said my tears evaporate as soon as I blink.  I have plugs and started using Restasis about 2 weeks ago.  I also take the TheraTears and use drops in my eyes very often during the day and they still burn most of the time.



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Re: Eyes
« Reply #6 on: October 13, 2010, 05:02:02 PM »
I think that the fact that a warm cloth makes your eyes feel better is significant. Warm compresses help SS folks when our eyes are really bothering us.  Dry eyes with me started with tears running down my face most of the time.  Then my eyes started burning alot - I thought it was from my moisturizer/makeup.  Then they got so RED you could barely see the blue or the white for that matter and then I felt like I had sand under my eyelids.  Finally, sent to Opthalmologist who  said I had severe dry eyes (and subsequently diagnosed with SS).  He explained that a normal tear has 3 layers, a fatty layer that hold the tear on the eyeball, a water layer and then an oily layer that holds it on your eye.  He said that I didn't have either the fatty layer or the oily layer and that's why the water keeps pouring from my eyes.  It doesn't mean that when you cry you don't produce tears (most people do - but some with SS don't).  That was five years ago.  Prescribed Restasis and it works.  Hope this helps.  Diane
Primary Sjogren's, RA, Raynaud's, Hashimoto's

Prairie Gal

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Re: Eyes
« Reply #7 on: October 13, 2010, 05:09:11 PM »
Diane, I'm a member of the Sjogren's Syndrome Foundation and so receive Moisture Seekers, their newsletter.  In the latest edition, there was an ad for Systane eye drops that are geared to those whose oily layer (produced by the meibomian glands) doesn't cut it.  It's interesting that OTC drops are getting better.

 So far, I haven't had to use Restasis or have my ducts pluged because my eyes have improved on all the supplements my rheumy recommended -- look under my signature if you're interested.  Others find that Lacriserts work well for them.


  • Guest
Re: Eyes
« Reply #8 on: October 13, 2010, 05:58:08 PM »
Hi Dream:

Yes, my eyes are very dry, and sometime they do water especially when there is bright light.  What you described are typical of dry eyes.  Nothing to do with your sister.  You didn't do anything wrong, dry eye is a natural process of aging, and hormone imbalance plus a bunch of other reasons.

None of the eye drops, eye gels, Restasis worked for me.

I found a product that did work well for me- TheraLife Eye- Autoimmune.  It is all natural, not a drug.

Check it out.



  • Guest
Re: Eyes
« Reply #9 on: October 13, 2010, 06:04:09 PM »
Yes, I remember when I had tears or some tears. My eyes became progressivly worse over 10 years. Now, my eyes are always irritated, some times more than others. I have plugs that help some.


  • Guest
Re: Eyes
« Reply #10 on: October 13, 2010, 07:56:44 PM »
Mine are burning right now! But I do believe 2 months of Restasis is making it less bad if you know what I mean.  My eyes have been driving me nuts for 6+ years but I was only diagnosed in August after my allergist told me there was nothing more he could do, it couldn't be allergies.  I recall late last year a period when if I used mascara I'd get black clumps in the corners of my eyes or strings of the mascara in other spots in my eyes but now they're even too dry to do that!

Please don't think you did something that caused you to get SjS. You were predisposed genetically, you had no control - none of us did.  It sucks and all we can do is hope (and pray) for better research and treatments in the future.

Joe S.

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Re: Eyes
« Reply #11 on: October 13, 2010, 08:05:56 PM »
Mine are burning right now, also! Too much computer time.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
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Re: Eyes
« Reply #12 on: October 13, 2010, 08:07:52 PM »
For me, it was like one day my eyes were fine and then BAM my eyes were terrible. They are dry, gritty, painful.

Don't beat yourself up over what you think you might have done or didn't do to cause this disease. I went thru the same thing and asked myself a million questions and did a whole lot of research hoping for answers and the truth is we don't have very much in the way of an answer.

I use a lot of eye drops thru the day just to keep moisture in my eyes. Find yourself a good opthalmologist.