Dry mouth? Sjogrens? ,..Have questions/ UPDATE

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

  1. tandy

    tandy New Member

    Hi guys~
    The last 6 months I've been having severe dry mouth.
    Nothing quenches it. I sip water all day and have to bring a drink with me wherever I go.

    I also have alot of cavities which could go hand in hand with Sjogrens. I learned about that here :)
    (thank you all)

    I told my rhuemy about it last week and he ordered bloodwork to test for sjogrens.
    I just had the bloodwork done so I don't yet know the results.

    Is the bloodwork pretty acurate?
    Do the meds really help produce saliva?

    last: what else could it be if its not sjogrens?
    I have'nt started any new meds.
    Dr. said to call him the end of the week for results.

    Thanks,
    Tandy
    [This Message was Edited on 11/11/2006]
  2. Kimba4318

    Kimba4318 New Member

    I have a very dry mouth also - it is a big joke about me ALWAYS having water with me. Cannot pick up my kids 5 minutes down the road without a drink.

    I thought I read, re: FM, that it was another tell tale sign of FM - these patients always showed up with their water in hand, etc. etc.

    So I just thought it was a FM thing. Let us know what you find out please.
    Hugs
    Kim
    (hope i am making a little sense - the Ambien just kicked in) Yawn :)
  3. rinaldo

    rinaldo New Member

    Hi I have severe dry mouth. After i took the Med nysatin Approx. 6 months ago i have had this my doctor keep telling me its yeast or allergys but nothing helps. Going crazy
  4. tgeewiz

    tgeewiz Member

    I have had dry mouth for about 10 years. However, the drs. tell me that I do not have sjogrens even though I have all the symptoms - dry eyes/mouth, fatigue, joint pain, stomach pain.

    There are a few products that you can take without a prescription for dry mouth. They are:

    1. N Acetyl Cysteine (spelling) - this is an amino acid and is available at many health food stores.

    2. Biotin - a B vitamin available at Walmart.

    Also, the drugs salagen & evoxac help with dry mouth. Salagen seems to work better for me.

    Good luck!
  5. lenasvn

    lenasvn New Member

    Only 65% of people with Sjogrens will show positive on these tests. Biopsy is usually the way to go, more reliable. People with FM often have dry eyes. I suspect this would also be the case for dry mouth? Just speculating though.
    [This Message was Edited on 10/14/2006]
  6. shootingstar

    shootingstar New Member

    The gritty eyes bother me most. Varies some from day to day.
  7. tandy

    tandy New Member


    I never would have thought that dry mouth would be that bothersome or that bad to deal with!
    well,... I'm wrong!
    This is horrible!

    I feel like the insides of my cheeks are sticking to my teeth! No moisure whatsoever!
    Nights are much worse.

    I tried/bought biotene moisture gel and toothpaste for dry mouth. They DO help but only for an hr.
    I guess I'll wait and see what the doc says this week about the test.
    untill then,..drink up!
    (thats one way of getting our water I guess? :)
    Hugs
    Tandy
  8. lighthouselady

    lighthouselady New Member

    Don't forget that many of our meds can cause dryness in the mouth, eyes and all that stuff. I've been tested for Sjogren's but it wasn't that. They tell me that the Trazodone that I take will cause extreme dryness. I just treat the symptoms caused by the treatment, huh?????

    Good luck, Judy
  9. Hope4Sofia

    Hope4Sofia New Member

    I was tested earlier this year for Sjogrens and it was negative. My current neurologist still believes I have it though. I have many of the symptoms and I guess it goes very comonly with Dysautonomia (my main diagnosis).

    I get the very dry eyes and skin and, less frequently, dry mouth.

    I'm curious about this biopsy that was mentioned. Where/how do they do that? I just had a biopsy taken off my ankles but I think that is looking for muscle/nerve damage.

    Meds can definitely cause these symptoms as well. My symptoms were all in place long before I went down the pharm road so we're pretty sure that's not the culprit here.

    OH! I believe Sjogrens can also be tested by a opthomalogist for dryness in the eyes. I haven't done this.

    Blessings,

    Sofi
  10. tandy

    tandy New Member

    and Sofi :)

    I apreciate your input on my post.

    hugs
    Tandy
  11. lenasvn

    lenasvn New Member

    I think they take a biopsy of the saliva glands, I've heard the lip too. Odd, I never managed to convince my doc to do it though. I've been busy convincing him that I am ill at all. On a happier note, he does believe me now, and he knows about FM and CFS but not how to diagnose/treat.

    We're also busy with some tests for my disability app. I let him deal with that first.
  12. lv2sing

    lv2sing New Member

    I have had Sjogrens for 10 yrs. No, you do not have to have a positive bloodwork to have it. Mine has always been negative just until lately, my ANA has been a little elevated is all. As far as the saliva meds, it did work, but I couldn't stand the side effects(stomache pain, sweating, etc).

    The fact that you have dental caries, & need to keep water w/ you at all times sure sounds like it to me. How are your eyes? I have punctal plugs in the lower tear ducts to keep what tears I do have in my eye, but I still haven't noticed much difference, so I use Restasis drops (prescription), along w/ GenTeal eye GEL for severe dry eye. Try using saline spray for your nose severalx a day for dry nose,especially before bedtime, suck on sugarfree candies (hard ones).It will help promote saliva. Use body creams for dry skin, they hydrate better than lotions. Shea butter creams work really well.
    My rheumy diagnosed me by symptoms, & my opthalmologist did the test where he wets a strip w/ your tears to see how long it stays moist. My tears are almose non-existent.
    Hope this info helps! Write if you have more questions...
    PS....Biotene mouthwash feels wonderful if you have mouth or tongue sores, & avoid any mouthwashes w/ alcohol. Biotene toothpaste is good too, also TOM'S of Maine.
    [This Message was Edited on 10/15/2006]
  13. Hope4Sofia

    Hope4Sofia New Member

    I found your info helpful. Thanks for posting.


    Sofi
  14. lovethesun

    lovethesun New Member

    (they know who drinks most of the bottled water at our house) I use sugar free popsicles.They are 20 calories and cures me for a couple of hours.I have stuff for dry mouth but it is too sweet for me.Linda
  15. tandy

    tandy New Member

    Great info and tips!

    I apreciate you taking the time to answer me.


    so far,... the eyes are'nt too bad. What eye symptoms I have now and then I thought was just allergys acting up. ??
    could be all part of sjogrens.
    although, by far my mouth is the worse!!

    I did'nt know that alcohol rinses were bad for dry mouth. (Thanks!!) No more listerene.

    Take care everyone :)
  16. tandy

    tandy New Member



    I don't know where to turn now.
    My bloodwork for Sjogrens came out negative ~

    I'm bummin because now I have this horrible dry mouth without a cause or cure :(

    The nurse called me and said it was neg. but that my sed rate is up. ????
    she said that generally the dr. does'nt treat one for dry mouth or sjogrens with a neg. bloodtest.
    I wonder whats causing this.
    Its not a little dry,......
    its really bad.

    just hoping someone will check this and offer my next step/suggestion.

    Thanks
    Tandy
  17. charlie21

    charlie21 New Member

    I am from the U.K. and pleased to meet you. I have had dry eyes for four years now. I have dry nostrils, and dry mouth. I have an appointment to see an occular plastic surgeon beginning of December. I have no idea what the outcome is going to be, but I am presuming they will test for srojans excuse the spelling. I also get little red blisters at the back of my throat which burst, not sure what the fluid is. Get four or five at a time, burst then a few weeks later they are back again. They don't hurt. Looking for some answers. Charlie
  18. tandy

    tandy New Member

    hummmm?? we're both looking for answers :)

    Nice meeting you too.

    I also have dry nose now that you mention.
    I get nose sores sometimes inside that hurt and bleed like canker sores.

    My dry mouth is my biggest nuisance of them all.
    Its all day long and night. I'm parched as tho I have no
    fluids. ???

    maybe its our meds?
    or someone once mentioned it could be a sign of thyroid problems or diabetes. I think i'll get checked for both of those next.
    I hope you find out soon too.

    Take care :)
    Tandy
  19. nanna4550

    nanna4550 New Member

    I just went to the Ear nose & throat doctor. Had the bloodwork and the positive ANA, but not a positive for Sjogrens. I still have stones in my salivary glands due to slow saliva flow. The only treatment is removal of the paratoidal (sp) glands, he says. Imagine how dry my mouth will be then. I am reluctant to have the glands surgically removed even though he says the other glands will make up for the lost saliva.
    From another post someone said that ph might be to acidic causing the dryness so I'm trying baking soda and lemon juice to restore proper ph. One of the stones is the size of a large pea now (I've been dealing with this for years). It's just calcium but it makes the salivary gland hurt all of the time.
    I hope you figure out what's wrong. Nanna
  20. Catseye

    Catseye Member

    I was having this problem but only at night. It turned out I was getting dehydrated because of no anti-diuretic hormone. I got a nasal spray for that eventually but first I tried supplementing with the proteins responsible for cell hydration: creatine, taurine and glutamine. Glutamine is in a lot of foods so I just took creatine and taurine and noticed it helped a little. good luck!