Sjogren's Syndrome

[gypsyangel]

I was diagnosed with Sjogrens Syndrome a few years back. It all started with my severe dry eyes. My left eye actually does not make any tears, and the right one just 2 mm. This was done with a Schirmer's Test which they use a piece of special paper in your eye to measure your tears. Normal eyes should have over 10mm. Within 2-3 years I suddenly developed this overwhelming fatigue. I could wake refreshed and within 1-2 hours I couldn't keep my eyes open. The blood tests didn't confirm this autoimmune disease, but my symptoms did. Plus I have all this low back pain also associated with the condition.
I am wondering if anyone else has this disease?

 

[Trellum]

Hi there! I didn't want to let this post unanswered, I don't have the disease myself, but if I am not mistaken the daughter of one of our members do. Sadly I haven't seen her around here for a few months.

 

[wulfman]

I have never heard of such a thing. If it is auto immune then I am assuming there is no cure, only a course of treatment to make you feel better. My dad has colitis (also auto immune).

 

[wulfman]

You can't keep your eyes open due to dry eyes and not making enough tears or because of fatigue ?

 

[Booklover]

I was originally sent to the rheumatologist because my doctor thought I might have this. I've had the same test you had done with the eyes. My eye doctor placed plugs in that hole at the inner corner of my lower lid so that I wouldn't lose what little moisture I produce. I also have an extremely dry mouth and carry water with me everywhere. I experience the eye fatigue when my eyes get really dry and sleep is the only thing that helps, but I'm convinced now that my dry eyes are happening because I'm so fatigued. I used to think it was the other way around. Using eye drops without preservatives is also helpful.

The rheumatologist discounted the sjorgen's. The only other autoimmune disease I have is Raynauds, and I guess Sjorgen's often occurs with other autoimmune diseases such as rheumatoid arthritis and lupus, which I definitely don't have. None of my blood tests supported that diagnosis, either. He said that it's an extremely rare condition. There is a pretty definitive test involving tissue from the mouth, but I had no desire to have the test done once we talked. Is that the test you had done?

I've seen a few articles recently that say dry eyes and throat are pretty common complaints of fibromyalgia patients.

 

[Laurainaustin]

I have Sjogren's syndrome as well. OMG the eye dryness - a few times my eyes got all inflamed and I was blind....scariest thing in the world to me. I take Restasis right now with good results. I was diagnosed with Lymphocytic Colitis (after 27 years of diarrhea!) a few weeks ago. Apparently LC is strongly related to both Sjogren's and Fibromyalgia - who knew?! It's not clear if one causes the others or if they all are caused by the same thing (thyroid? Celiac? Possible drug or virus), I am happy and relieved to have a diagnosis that could lead to real information about my condition, and possibly some healing.

I started the SCD diet in response to that diagnosis and did an Enterolabs test for food sensitivity and got a biopsy to determine if I've got Celiac disease, which is apparently on the same gene that causes LC. Waiting on those results now, but I'm on the most restrictive diet so avoiding all possible triggers.

At the moment I have very little pain AND minimal intestinal difficulty. I am not sure I could manage this diet for years, but I'm slowly adding in new things - a veg every few days, all cooked to death.

ANYWAY, just sharing.