Sjogren's and dry eyes BE VIGILANT

Discussion in 'Fibromyalgia Main Forum' started by IntuneJune, Sep 3, 2006.

  1. IntuneJune

    IntuneJune New Member

    I have been treating with OTC (over the counter) products, Systane Eye Drops, Artificial Tears, what ever is on sale.

    The past month or so, I started with pain in my eye, outer quadrant, stabbing type pain. It went away...... last week it really acted up in my right eye, hurt like "heck" shooting, stabbing pains.

    Called the ophthalmologist and the office had me come in within the hour.

    Doctor believes this is all from my dry eyes.

    I have to admit, I was not being as vigilant over the past three months as I used to, falling out of the routine....

    But he also recommended Refresh Liquigel drops over others. I can feel the difference between my fingertips.

    Don't want plugs yet, he says they are using the dissolving plugs, every three to four months new plugs are inserted.

    I was SO surprised this much pain was from dry eyes.

    BE VIGILANT......and try Refresh Liquigel drops.

    Fondly, June
  2. IntuneJune

    IntuneJune New Member

  3. Lolalee

    Lolalee New Member

    June, how did you know you have Sjogrens? My eyes have been very dry (especially in the AM) and scratchy. Sometimes I can't open my eyes until I put water on them. How is this illness diagnosed?

    Thanks,

    Lolalee
  4. lenasvn

    lenasvn New Member

    Blood tests are unreliable (although some regular MD's keep relying on it). A lip or oral biopsy is the way to diagnose Sjogrens. Some GOOD eye docs are able to diagnose as well, but unfortunately it's common they just diagnose "dry eye" which is common without having Sjogrens.
  5. aquabugs

    aquabugs New Member

    It is a serious autoimmune disorder. If you are having that much trouble with dry eyes, get your doc to refer you to a rheumatologist to check you out. You will also need an opthalmologist to properly evaluate the dryness of your eyes. The eye doc will do a Schirmer's test to determine the degree of dryness. They place a small strip of paper in the corner of each eye and measure the mm of moisture absorbed within a particular time period (something like five minutes). They will also put dye drops in each eye and examine the cornea for dye uptake to see if there is any corneal damage due to the dryness. I was diagnosed with Sjogren's several years ago. For years, I thought I just had allergies as my eyes were scratchy and itchy with burning and always red. I finally realized they were dry and started using moisturizing drops. My rheumy diagnosed me on the basis of my symptoms as my test results were all negative except the ANA. Eventually I had a lip biopsy, which is the "gold standard" for determining Sjogren's. HOWEVER, the test has a high incidence of false negatives and also the doc who reads them really has to know what he is doing. If your lip biopsy is positive, it means you can be virtually certain you do have Sjogren's. If it comes back negative, you have learned nothing....you still may or may not have Sjogren's. As mentioned before a really good doc will look at the constellation of symtoms, not just test results...those are changeable.

    I finally got to the point I was using Refresh drops 15-20 times a day. My eye doc put me on Restasis and it has worked wonderfully for me. It took about 5 months for it to really take effect, but now I used that twice each each day and no other drops. I am also on Plaquenil to treat the Sjogren's, plus pain meds for joint pain. It's difficult many times to tell where the fibro ends and the Sjogren's begins. Between the two "syndromes", my fatigue is off the charts. I tried my best to keep working, but I have been off work for one year due to the pain and fatigue.

    Many medical people are still not very educated on Sjogren's (as they are not about FMS or CFS either) and will tell you, "Oh, that just causes a little dry eyes and dry mouth." I wish! It is a condition that needs to be taken seriously. In rare cases, there can be serious complications. Not trying to scare anyone, but just want to be sure you get this checked out further than just finding out which eyedrops are best. It can be a very debilitating disease for some people. I am one of those lucky ones. LOL

    Check out the Sjogren's World website if you have questions. Very informative and nice people there.

    Take care
    Sylvia
  6. IntuneJune

    IntuneJune New Member

    Lolalee, Sylvia spelled it out beautifully. There was the blood work with positive ANA, radiological studies, ophthalmogical testing, and for me the dreaded lip biopsy. I was in agony until the doctor took the few stitches out... don't know exactly what was wrong.. but as soon as he pulled them out, relief.

    June
  7. shelbo

    shelbo New Member

  8. JewelRA

    JewelRA New Member

    My eyes have been misery for about a year and a half now - dry, red, gritty, painful. I use those OTC drops all day long and they only work for a few seconds. I can hardly wear my contact lenses at all any more.

    I posted in my post about seeing floaters my disappointed visit with the Eye Foundaton specialist who said nothing is wrong with me. <rolling eyes> I'm in search for a new opthalmologist now, as I am sure something is wrong with my eyes.

    My rheumy didn't give me a diagnosis, just referred me to an opthalmologist. Would the rheumy or the op. be the one to treat Sjorgen's?
    [This Message was Edited on 09/04/2006]
  9. aquabugs

    aquabugs New Member

    Normally, the rheumy would treat the systemic Sjogren's symptoms and the opth would of course only treat your eyes. A good internist would also be a good choice to treat Sjogren's I am told. Read up on Sjogren's as much as you can and talk to your doc. If your rheumy doesn't take you seriously and you truly feel you have problems pointing to Sjogren's, then perhaps a new doc is in order. As I mentioned before, there are a lot of docs who aren't well educated on Sjogren's and they consider it nothing more than a nuisance. My opth is convinced I have Sjog on the basis of how severe my eyes are. But luckily I have a fantastic rheumy too.
  10. Lolalee

    Lolalee New Member

    Aquabugs - Sylvia, thank you for all the great information. Unfortunately, I live in an area that is 20 years behind in the acceptance and treatment of FMS and CFIDS. Therefore, I would probably have to go to a different state for the diagnosis. Right now I have other problems, as well and am trying to figure out what to do/who to see/where to go for treatment. This morning I am again not able to walk because of my left leg. It just won't "work"....can't take a step.

    Lord, what a mess I am right now.

    Thanks to June and lenasvn for your responses.

    Lolalee