lv2sing... sjogrens syndrome question

Discussion in 'Fibromyalgia Main Forum' started by nanna4550, Oct 14, 2006.

  1. nanna4550

    nanna4550 New Member

    You responded to a post about salivary gland disfunction and you mentioned sjogrens syndrome.

    I originally thought I had sjogrens when diagnosed with FM and did have an elevated ana but Rheumy said if I had sjogrens I would not be able to wear contacts. My eyes are dry but I hate glasses (they give me a headache), so I put up with it and use drops.

    I have allergies, so dry nose is not a problem.

    My skin is so dry that no amount of lotion hydrates it. Especially my legs and feet.

    If these are the symptoms of sjogren's, I will ask my doctor about it again.

    What do they do to help these symptoms??

    Thanks, Nanna
  2. nanna4550

    nanna4550 New Member

  3. lv2sing

    lv2sing New Member

    I use GenTeal eye GEL for dry eyes in the severe formula, plus Restasis prescription drops. They work really well for inflammation. For my nose I use the generic saline spray, several x a day. Even though your nose is not dry, it can help allergies, because it can get the allergens out. It also helps prevent sinus infections. I can go through lotions a tube a week, but the best kind I have found is the actual cremes-lotions do not hydrate as well. Bath& Body cremes, & things like shea butter cremes in the tub (from Wal-Mart). My feet get extrememly dry also!
    Just so you know, your bloodwork can come back normal & you can still have Sjogrens. My ANA has always been normal, I have had it for 10 yrs, & it is just now starting to get slightly elevated. My past rheumy diagnosed me by symptoms only, along w/ the test the opthalmologist did to check for extent of dryness. I also used to wear contacts. They would literally dry in my eye like they had been sitting out on the carpet for days. more contacts for almost 9 yrs now, & I HATE it! I really miss them. But I would never be able to stand even to attempt to put them back in my eye.
    Drink alot of water, sip frequently through the day, & only sugar free soda's. Sucking on sugarFREE hard candies & gums will help produce more saliva. Don't get sugarless, they still have sugar. See your dentist atleast 2x a year. I also use a prescription fluoride from my dentist (It's childrens, which has the highest fluoride amount). It is brush on, & I have been cavity free for 2 yrs now.
    There are prescription drugs out now to help produce more saliva. 2 kinds I think. I tried Salagen. It gave me awful sweating spells, & stomache cramps/ bowel symptoms. I tried it for 2 weeks, & couldn't stand it anymore. They are all suppossed to have this effect. You might try plaquenil if you have the fatigue & joint pain. I took it for almost 2 years, it helped greatly w/ my joints & the fatigue, but it gave me (excuse me....gas), really bad along w/ cramping. It got to the point where I couldn't leave the house, so I stopped it. But most people are suppossed to be able to tolerate it well (it's an antimalarial drug). I hope this answers your questions.
    Good luck, write if you have any more questions. HUGS
    PS ---Not everyone has dry eyes enough to not wear contacts-you may be in the early stages. Some people it may be more nose & mouth symptoms. Thought I'd let you know...I'm sure I had Sjogrens for up to a yr before getting diagnosed. My contacts weren't dry, they just kept feeling like something was on them. I knew it was something else when I bought new ones, & my eyes still felt that way.
  4. yodasmom

    yodasmom New Member

    I am a hygienist and fluoride is vital for your dry mouth. 2-4 dental cleanings a year with fluoride tx plus nightly fluor. as mentioned. Lots of water. New study shows Essental Fatty Acids help dry eye. 3/day. My besst friend has it so I keep her informed as I have had CFS for 20-30years and she is new at the holistic way. These will help..good luck