Dry mouth and eyes?

Discussion in 'Fibromyalgia Main Forum' started by scrappnmom, Oct 6, 2005.

  1. scrappnmom

    scrappnmom Member

    Dry mouth and eyes?

    I have been dxd with Fibro. And the Rheumy says I may have SJS, but he hasn't tested me for it. I have very dry mouth and throat and I think my eyes may be dry too since they get irritated and feel like I have sand in my eyes sometimes. I also have a dry, stuffy nose and sometimes it's hard to blow my nose and sometimes it bleeds when I do. I also am having a problem with my ears. They sometimes feel like something is in my ear (like a feather) and there is intense itching. I've had the family doctor look in my ears and he says they look fine. I also have joint and muscle pain and osteoarthritis, especially in my back shoulders, neck and feet and hands. The Rheumy has done lots of lab work on me, testing me for Lupus (since my daughter has it). But all my lab work always comes back normal. One of my grandmothers had RA and the other one had SJS. He has told me that he would have to take me off of all my meds to get an accurate test. And he says he really doesn't want to do that because he doesn't think it's a good idea, because I have so much trouble keeping my fibro under control. He also says he would hate to have to put me on the meds for SJS along with all I am already on. I already take Effexor XR, Mobic, Flexeril, Keppra (I also have Epilepsy), and WelChol for high cholesterol. My question is, shouldn't we find out for sure? And I know I've read several places that some Fibro patients have trouble with dry mouth, throat and eyes. How do you know if your problem is SJS or just because of your Fibromyalgia? What other tests can be done besides all the tests for ANA and other antibodies?

  2. JLH

    JLH New Member

    I was diagnosed with SS but with no testing done. The only test that I knew of was on your eyes re the dryness (well, I did have that one--but that's the only one done.)

    I also have fibro/cfs, severe osteoarthritis, osteoporosis, and lupus.

    What you might be feeling in your ears is something that bothers me witht he SS. I have a problem with the parodid glands which are under your ears and under your jawline. With SS, the tend to swell a lot. When mine swell, they often do not hurt, but the swelling puts pressure on my teeth - and make my jaw teeth hurt like I have a bad toothache - and they put pressure on my ears - which will make my ears feel funny but most often make me feel like I have an earache.

    The doc has run ultrasounds on my parodid glands to see if they have stones in them, but they were clear -- just swelling only, and for no reason for the swelling.

    So, for me, the SS just causes dry eyes, dry mouth, and parodid glad swelling. I take no specific med for it, and have only been told to use saline eye drops to moisten my eyes, to use stuff to moisten my mouth (and to suck on sugar-free lemon drops when I'm out and my mouth is really dry-because the lemon will make my saliva glands secrete more moisture).

    If your daughter has lupus, you might, too, even if your ANA is negative.

    I have a symptoms list for lupus that I will post for you (in another reply) so you can see if you think you have lupus.

    I was told that the SS is a "side disease" of lupus.

    Hope some of this helps -- I didn't mean to rattle on and on!!!

  3. JLH

    JLH New Member


    Percentage Symptom

    95% Achy joints (arthralgia)
    90% Fever over 100 degrees F (38 degrees C)
    81% Prolonged or extreme fatigue
    90% Arthritis (swollen joints)
    74% Skin Rashes
    71% Anemia
    50% Kidney Involvement
    45% Pain in the chest on deep breathing (pleurisy)
    42% Butterfly-shaped rash across the cheeks and nose
    30% Sun or light sensitivity (photosensitivity)
    27% Hair loss
    17% Raynaud's phenomenon (fingers turning white and/or blue in the cold)
    15% Seizures
    12% Mouth or nose ulcers


    Because many lupus symptoms mimic other illnesses, are sometimes vague and may come and go, lupus can be difficult to diagnose.

    Diagnosis is usually made by a careful review of a person's entire medical history coupled with an analysis of the results obtained in routine laboratory tests and some specialized tests related to immune status.
    Currently, there is no single laboratory test that can determine whether a person has lupus or not.

    To assist the physician in the diagnosis of lupus, the American Rheumatism Association issued a list of 11 symptoms or signs that help distinguish lupus from other diseases (see Table 2). A person should have four or more of these symptoms to suspect lupus. The symptoms do not all have to occur at the same time.

    TABLE 2


    Criterion Definition:

    • Malar Rash
    Rash over the cheeks
    Discoid Rash
    Red raised patches

    • Photosensitivity
    Reaction to sunlight, resulting in the development of or increase in skin rash

    • Oral Ulcers
    Ulcers in the nose or mouth, usually painless

    • Arthritis
    Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)

    • Serositis

    • Pleuritis or pericarditis

    • Renal Disorder
    Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)

    • Neurologic

    • Seizures
    (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects

    • Hematologic
    Hemolytic anemia or leukopenia (white bloodcount below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.

    • Immunologic
    Positive LE prep test, positive anti-DNA test positive anti-Sm test or false positive syphilis test (VDRL).
    Positive test for antinuclear antibodies in the absence of drugs known to induce it.

    Adapted from: Tan, E.M., et. al. The 1982 Revised Criteria for the Classification of SLE. Arth Rheum 25:

  4. scrappnmom

    scrappnmom Member

    Thanks! I have also wondered if my seizures have anything to do with the Fibro or sjogrens or lupus. My diagnosis of Epilepsy showed no reason for my seizures. But, I have had seizures since I was 11 or 12! They are under control now with my seizure medicine. I noticed you have Lupus too. So, you have had all the lab work. Do you have the positive ANA and the Anti Ro? My daughter is positive for both, plus the malar rash and the photosensitivity, and some mild problems with arthritis (she is only 25) She was dxd with Lupus when she was 14! I am supposed to see my Rheumy next month and I may ask him to do the Schirmers test on me. He did it on my daughter a few years ago. So, I know he can. I've never had the parotid swelling, but, I have often had sore knots or spots in front of my ears. But, nothing like I've read other people with SS have. I actually hope I don't have SS because I know people with that have to take antibiotics pretty often. And I can't "Safely" take any antibiotics! I have had Clostridium Difficile 3 times as a result of taking anti-biotics! Terrible!!!! So, I am scared to death of them! I almost died with it the first time I got it and then relapsed 2 more times in 6 months, so since I relapsed that makes me a high risk of getting it again! Anyway, I'll stop rambling. Thanks for the info!
  5. scrappnmom

    scrappnmom Member

    Oh I forgot to mention that I do have several symptoms of Lupus. I of course have joint pain (hands, feet, hips), muscle pain, sores in mouth and nose, long standing fatigue, I have also had the pain around my ribs in the center of my chest (?), but I'm not photosensitive or have a malar rash or anything like that.

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