Sjogren's Syndrome

Discussion in 'Fibromyalgia Main Forum' started by GeneticDefect, Jul 11, 2003.

  1. GeneticDefect

    GeneticDefect New Member

    Everyone hear or have Sjogren's syndrome? It's an autoimmune disease.

    Hippen...that is wonderful that your sjorgren vanished. I'm not sure I have it quite yet. thanks to all
    [This Message was Edited on 07/11/2003]
  2. darlamk

    darlamk New Member

    I think today's tip described Sjogren's (if you look on the home page you will find the link) It mentioned that over 20-25% FM people have it also - dry eyes & mouth, aches & pain, etc. I have all the symptoms but my doc just blew me off when I asked him about it last year. I can no longer wear my contact lenses and my mouth is always dry. It could be from my meds too.....
    Take Care,
    Darla
  3. Plantscaper

    Plantscaper New Member

    Dry mouth, nose and eyes..feel like you are in a desert, all the time..have not found any good solutions, until PatPalmer suggested adding salt to diet..will see how it pans out, over time..seems like I am feeling more hydrated, but have, in the past, had to carry water with me at all times..however, Madwolf indicates that this is a big symptom of Adrenal Insufficiency, too..but without a doc, so noone to treat for that, either..

    I have developed several autoimmune diseases, I think, as a result of having an upregulated immune system..

    Hope you find something that helps,
    Plantscaper
  4. GeneticDefect

    GeneticDefect New Member

    I live in Phoenix and assumed thats why my nose, eyes (cant wear contacts anymore either)and mouth were dry. My rheumie tested Sjogren antibodies SS-A neg, SS-B pos. I'm confused 'cause they say you can test positive for SS-A and have Sjogren, or test positive for SS-A and SS-B and have Sjogrens but not SS-B by itself. Is something whacked out with my test results. I tested postive for SS-B only.???

    Negative ANA, ESR, CRP. Yeah, symptoms can be from meds too. Especially Elavil.

    Man, these autoimmune diseases are so prevalent along with these strange immune dyfunctions.

    ~Karen
    [This Message was Edited on 07/11/2003]
  5. Hippen

    Hippen New Member

    There is a tear test they can run on a person to see if they have Sjorens...there is a name for the test....I just can't think of it right now. They stimulate your eye to make tears somehow and then measure how many tears you make in a certain amount of time. At the beginning of my Fibro/Cfids career...LOL. I had Sjorens and it was miserable to say the least. It has vanished now...guess I am out of that stage of the disease. I used to use saline drops to lubricate my eyes...especially before bed...also can chew on sugar free candies to lubricate your mouth. Oh and saline nasal spray can be used to moisten nasal passages. Hope this helps...Hippen
  6. Susan07

    Susan07 New Member

    My sister has had to have both salivary glands removed from this.
  7. Fibromiester

    Fibromiester New Member

    I was on saline nose sprays, eye drops, (and ointments at night), and using a mouth-solution pump to keep my mouth from being dry, when I convinced my Dentist to put me on an Rx for Sjogren's (SHOJREN'S). I used "Salagen" for less than a year, but I would rather do that than block tear ducts or remove glands. It can also cause cavities & gum disease -ESP. if you suck on mints. I don't know how I got better!- (But lately I've started up with the dry nose & mouth again, SIGH!)
    Do a Search; and see an Opthamologist or an Oral Surgeon if you suspect there is more to your Dry Mouth than your MED's!
    Love,
    Fibromiester
  8. IntuneJune

    IntuneJune New Member

    Sjogrens is an autoimmune disease. The hallmark symptoms are dry eyes and dry mouth. Sjögren's may also cause dryness of other organs, affecting the kidneys, GI tract, blood vessels, lung, liver, pancreas, and the central nervous system. Many patients experience debilitating fatigue and joint pain. Symptoms can plateau, worsen, or go into remission. While some people experience mild symptoms, others suffer debilitating symptoms that greatly impair their quality of life.

    In my workup the doctor ordered a biopsy of the salivary glands, when the ENT went in, he said there were slim pickings, instead of looking like grapes, they were dried up like raisens and very sparce. June

  9. tulip922s

    tulip922s New Member

    I was just recently tested for Sjogrens and my results came back negative. My eyes are so dry I can no longer where contacts, I can't even walk into the other room without my water bottle as my mouth is so dry and my voice is changing,,,sounds gravelly. No one else mentioned vaginal dryness, is this yet another symptom of CFS/FM? Tulip
    [This Message was Edited on 07/12/2003]
  10. GeneticDefect

    GeneticDefect New Member

    Yes, any mucus membrane is at risk for dryness. Luckily I don't have a problem with this orifice.
  11. pearls

    pearls New Member

    Every single night I have mouth dryness so much that I cannot spit! This foamy, white stuff just gets as far as my lips and I have to use my fingers to get rid of it!! (Sorry about this gross description!). Anyway, I use salt water to rinse my mouth, gargle (swallowing a bit of the saline), and do nasal lavage (nicer description for washing out your nose and past the sinus openings). Then I feel much nicer until I wake up again. During the day, I'm usually fine (in that way).

    Another cause for the problem might also be a deviated septum (which gets in the way of breathing through the nose). I have that, but find I can usually breathe much easier at night when I use a Breathe Right Nasal Strip. My husband thinks my nose is a "medium" nose, but the "large" works best for me. (Maybe he's being a diplomatic husband!) These strips pull up the nasal passages to allow for better breathing. I've found the lowest costing ones at Costco.

    Also, many - or perhaps most - people with fibromyalgia have THICKER SECRETIONS from every orifice. My problem with this has increased a lot in the past six months. Nasal lavage, like I said before - can really help with this (and probably with Sjogrens, too):

    Use some very hot water (test with your mouth or with your inner arm, like you would with a baby bottle). Add maybe 1/4 to 1/2 teaspoon salt per cup and stir. If you get the proportions right for you - and it is warm enough, it will not hurt in any way to put this water up your nose, and you could do this all day, as well, if you were so inclined. Tilt your head back and apply with the tool of your chosing. (I use a baby nasal suction device, but you can also use a spoon, or even a special device for this purpose. It is called a something-or-other pot! I can't remember the "something-or-other" part!)

    Anyway, let the water flow through your nasal passages and down into the back of your mouth. Then spit it out from your mouth. Gently blow your nose. Do this as many times as you are inclined to do it - perhaps until your mucus is clear, or until your mucus is thinner. Clean your equipment thoroughly. If you use this daily, clean it all every few days with 70% isopropyl rubbing alchohol. Then rinse thoroughly. (Once I apparently didn't get all the alcohol out of my suction device. Oh, my God! But I'm still alive to tell you about it. L.O.L.) Then let everything dry completely.

    Now, some ear, nose, and throat doctors do not approve of nasal lavage. They say that your body cleanses itself and you don't need this. Well, if I don't do this, I get more sinus infections and I feel a lot more uncomfortable. Again, those of us with fibromyalgia have THICKER SECRETIONS! A lot of doctors, even ENTs don't know this.

    One ENT told me that if I insist on doing this, I must use bottled water instead of tap water. There is a lot of validity to this. We don't know what sort of microbes or other polutants are in our water unless we have it tested by whatever is the most sophisticated test - probably expensive. But I have declined to do so because of the fuss involved in heating the water when all I have to do otherwise is turn on the tap. We must make choices.

    Hugs,
    Pearl

  12. aching

    aching New Member

    for sjogrens syndrome as my eyes and mouth are extremley dry. During the night my eye balls stick to my eyelids and my tongue sticks to the roof of my mouth. I have a positive ana but negative ss-a or ss-b, but I have read on sjogren sites that not everyone has ss-a or ss-b. My rheumy says no, it's just the fibromyalgia causing the dryness. He hasn't explained why my parotid glands swell up and are painful tho. Piper