anyone with Sjogren's Syndrome?

Discussion in 'Fibromyalgia Main Forum' started by garlinbarb, Feb 3, 2003.

  1. garlinbarb

    garlinbarb New Member

    I thought this might be the best board to post this on.
    My eye doc yesterday said I probably have it.
    My eyes, nose, mouth and throat are so durn dry all the time, it's very uncomfortable.

    Do any of you have any magic tricks that help?

  2. Cactuslil

    Cactuslil New Member

    Hi Barb. Nightmare sometimes! I have "it" and now I have no salivary glands working anywhere hear proper, if at all. I had some very serious oral surgery yesterday and his assist had to give me sips of water periodically or I could not swallow; no fluid.

    When not in dental crisis, I keep bottled water in the fridge specifically for me. I will lug one bottle for days just as my "sipper". I drink other fluids but the Sjordens never leaves so thirst or no the bottle goes everywhere. Everywhere! My condolenses.

    I have instructed, for all the good it will do, my grown daughters to please put glycerin on my lips and water on my tongue if I am every rendered incapacitated enough to be in a nursing facility. I recall in my nursing rotation the many unopened glycerin swabs and I feel Godly remorse for not useing them. CactusLil'
  3. pam_d

    pam_d New Member

    Welcome! I can relate! My rheumy did tests for sjogren's which came out negative; however he said he still thinks I have it (roughly 70% of people with sjogren's test positive, so 30% don't & still have may have it). He said my mouth was "bone dry", and like you, my eyes are very, very dry, too.

    This is one reason I don't take any regular meds for fibromyalgia, only supplements; so very many meds have the side effect of "dry mouth", and I figure, my mouth is dry enough as it is. I have serious allergies, but do the immunotherapy (shots) rather than use any kind of antihistimines because they're so drying. Used to like a glass of wine at dinner sometimes; stopped that, because my mouth was like a desert afterward!

    My rheumy gave me a sample of a med called "Evoxac" that is regularly prescribed for sjogren's which is supposed to help with saliva production. You might ask your regular doctor about this. I didn't use it because one possible side effect is urinating a little more frequently; no problem for some, but I have cystitis also & urinate too frequently as is, so I opted to not to try it.

    My eye doctor suggests the "tears" to lubricate the eye, and my dentist suggests the dental products designed for this purpose (there are gums, toothpastes & maybe even tablets now)----one type is called "Biotene", so you might check this out.

    And obviously drink plenty of water, but I know that with sjogren's, you never quite feel quenched no matter how much you drink.

    Good luck with this, it's a tough problem unfortunately...