Sjogren's syndrome...Dry Eyes

Discussion in 'Fibromyalgia Main Forum' started by brains, Nov 11, 2010.

  1. brains

    brains Member

    Sjogren's syndrome is a chronic autoimmune inflammatory disease in which moisture-producing glands are damaged,significantly decreasing the quantity and quality of salvia and tears.Although the hallmark symptons are dry eyes and dry mouth,Sjogren's also may cause dysfunction of other organs,affecting the kidneys,gastrointestinal system,blood vessels,lungs,liver,pancreas,and the nervous system.Patients may experience extreme fatigue and joint pain and have a higher risk of lymphoma.Sjogren's is one of the most prevalent autoimmune disorders,striking as many as 4,000,000 Americans.Nine out of ten patients are women.About half the time Sjogren's syndrome occurs alone, and the other half it occurs in the presence of another connective tissue disease such as rheumatoid arthritis,lupus,or scleroderma .How diagnosed blood test ...eye test measure tear saliva flow biopsy of lip etc..It tends to overlap Cfs and Fibro...please research
    please go to...... where u will find your answers[This Message was Edited on 11/14/2010]
  2. Mikie

    Mikie Moderator

    For giving this its own post. I've been doing a lot of research and have asked my doc to add some blood tests next month when I get my lab work done. From the research, I have found that, on average, it takes 6 1/2 years to get a definitive dx. Not unlike lupus, FMS, CFIDS, etc. A lot of the time, some of the tests for Sjogren's point to a positive result and some negative. I guess if one has a lot of the symptoms, one simply goes on the assumption that one has it and treats the symptoms as there is no cure. Of course, it's wise to try to rule out other conditions.

    There is a new instrument to test for the kind of dry eye which is produced by Sjogren's. Not all docs have it yet. It is used in conjunction with the stain test. I'm so glad I posted about the dry eye because of your feedback. Thank you so very much.

    Love, Mikie
  3. IntuneJune

    IntuneJune New Member

    I attended a medical meeting for another disorder..... and the topic of Sjogren's syndrome surfaced at the small table (in a room of 8 tables) at which I was sitting.

    I shared with another attendee I had Sjogren's syndrome and a physician who was sitting at my table said, "Remember those with Sjogrens have low IgM. "

    Hmmm, absolutely I do have low IgM and I am being treated for primary immune defeciency, but my immunologist tells me "your IgM will not improve."

    My immunologist is not treating or addressing my Sjogren's.

    So much is intertwined, I study about one of my problems only to fall into info about another problem.

    However, Sjogren's is SO MUCH MORE than dry eyes.

    Fondly, June
  4. Mikie

    Mikie Moderator

    As you know, I'm just starting the process of trying to rule in or rule out SS. My research has led me to believe that one is lucky if all one has is dry eyes and dry mouth. My chronic bronchial problems, the chronic sinusitis, extreme fatigue, bone dry skin, severe acid indigestion and severe pain in the pancreatic and liver areas all fall into the profile of SS. Even if one does eventually get diagnosed, there is no cure. We just have to deal with the symptoms. This is sooooo frustrating. I've been through all this before with the FMS and CFIDS. The problem with SS is that it is autoimmune and can lead to lymphoma and liver failure. Not a very bright outlook.

    Sorry to whine. I'm not the only one dealing with this. I pray for all of us.

    Love, Mikie
  5. heapsreal

    heapsreal New Member

    I wonder if alot of these other conditions like SS maybe caused by xmrv or other retrovirus. Is chronic red eyes as sign of SS, ive had some help with abx eye drops but it still persists, plus have the dry joints, like sand in them, i will have to talk to my doc about this. How do we get diagnosed with SS. But like u said theres no cure just symptom treatment, so i suppose its the same drugs as fibro and cfs that will be used for symptom relief. Are drugs like cortisone/prednisone used for SS if its an auto-immune thing, i know it wouldnt be any good long term but maybe used for flare ups.

  6. greatgran

    greatgran Member

    I was dx with Sjogren's by a rheumy several years ago but I just thought of the dry eyes. I didn't realize the sinus issues and many other aggreviations could be Sjogren's related. My eyes are really giving me a fit. Do you have blurry vision? I see my eye doctor Friday.

    Whine all you want as all this seems to be a loosing battle..

  7. Mikie

    Mikie Moderator

    Many people think SS is basically dry eye and dry mouth, which it is, but it can be sooooo much more. Many of the symptoms overlap with other illnesses, so it may be difficult to connect the dots. Yes, it is autoimmune so it can cause the body to turn on itself. Actually, that is what causes they type of dry eye and dry mouth. The body attacks the oil glands in the eyelids and the salivary glands in the mouth. The body's organs may be attacked and cause kidney, liver and/or pancreas pain or even failure. In some cases, researchers believe lymphoma is a complication.

    The list of symptoms I saw when I researched was long and many of my newer symptoms fit the profile. Chronic sinusitis and bronchial problems are common. Skin can be extremely dry. My hair is changing texture and becoming drier. I suppose the oil glands in my scalp aren't producing enough oil.

    Pain and peripheral neuropathy in hands, feet and legs are common. I've always had some OA in my hands and wrists but they have become more painful and my wrist joints are becoming deformed.

    From my research, I now know it is very difficult to rule SS in or rule it out. The type of dry eye I have is very significant and when one adds all the other symptoms, it is pointing to SS. I'm sure there will be more tests and visits to specialists before all is over.

    I did have some blurring of vision but it didn't last. My doc has steroidal eye drops if nothing else works. Steroids can be used as they are with other autoimmune illnesses. What has worried me most is the pain in the pancreatic and liver areas, along with acid indigestion. I've drastically changed my diet and have added Zantac and digestive enzymes. It is helping.

    I'm using heat packs on my lymp nodes, along with massage, to get them to drain. They've been very swollen and painful on my face, neck and jaw. today, I woke with painful lymph nodes under my arms with one breast very sore. I've been applying the heat and massaging them. I need a mammo but there is no way I can get one now.

    These symptoms, which started with extreme exhaustion, began a few months ago and now, new ones are coming on like gangbusters. Until I get more answers, I'm keeping busy just dealing with them.

    Love, Mikie
  8. Mikie

    Mikie Moderator

    Brain fog is another symptom. I've been having this but it's not as bad as it was at its worst when I was so sick with CFIDS in the beginning. My balance isn't good.

    What I have found helps all my symptoms is to get moving. When the exhaustion first set in, I lay around a lot. Lymph nodes don't drain well when we lie down. If I absolutely have to nap, I prop myself up with some pillows.

    I try to do at least one thing which entails moving physically each day. That helps the lymph nodes, helps the neuropathy, decreases pain and also decreases fog once I get moving. It also helps me not to be depressed because, even if I only get one thing done, it's better than getting nothing done. If there is a day when I absolutely can't do anything, I rest and don't feel guilty. Basically these are the things which helped me heal with FMS and CFIDS.

    Love, Mikie

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