Sjogren syndrome; is it common for F M'rs?

Discussion in 'Fibromyalgia Main Forum' started by mermaid01, Jun 5, 2006.

  1. mermaid01

    mermaid01 New Member

    I have been having trouble with dryness for a long time; just the last few months things have changed for me. I have a very dry mouth; if I'm talking on the phone often it is very hard because of dryness. I have to keep gum, sugarless candy, water; this goes on at night too. I bet I go through 2 packages of gum a day/night. Now my eye's are getting bad too, especially my left eye. They feel funny, like they do not have moisture and can't move easily. I have FM and my pain level is constantly 7-10. I guess what I want to know is there a correlation between F M & Sjogren syndrome? Is there a group like this one that helps people with this syndrom: gads, I am self diagnosing myself.

    Thanks for your help.
    A Dry Mermaid01
  2. JLH

    JLH New Member

    A lot of people with fibro also have Sjogren's; however, I have read that it is more common for people with Lupus to have Sjogrens, too.

    I have all three!

    Have you been to a Rheumatologist about all of your problems? If not, you need to go to one. There are many things they can do for the dryness. There are meds to make your salivary glands produce more saliva, etc.

    You also need to see an eye doctor.

    My rheumy told me once to keep sugar-free lemon drops around to suck on. The lemon will cause your glands to produce more saliva.

    There is a new mouthrinse out that helps moisturize your mouth -- and it comes in a spray, too. I think it is called Ocean something. But it's in the mouthwash isle if ou want to look at it.

    I don't know if there are message boards for just sjogrens or not -- just do a search on google and see what you find!


    Hugs,
    Janet
  3. usanagirl

    usanagirl New Member


    Sjogren’s syndrome is a chronic, slowly progressive autoimmune disease, which is characterized by lymphocytic (type of white cell) infiltration of the salivary glands of the mouth and the lacrimal glands of the eyes. This is why the primary clinical symptom is dryness of both the mouth and the eyes. The parotid glands and other salivary glands may become enlarged. These symptoms can be present years before the disease is fully manifested or diagnosed. Patients can have difficulty swallowing their food, talking for any length of time, and complain frequently of dry, scratchy eyes. These patients can have other problems involving the lungs, vascular inflammation, kidney problems, and they may even develop malignant lymphoma. This disease can take a relatively benign course or may be very aggressive.

    Sjogrens remains fundamentally an incurable disease. This makes it imperative for patients with Sjogrens syndrome to do everything possible to build up their body’s natural defenses. This is why I believe that an aggressive nutritional supplementation program is essential. The best way to build up the body’s natural immune system, natural antioxidant defense system, and natural repair system is via nutritional supplementation.

    In the case of autoimmune diseases, I believe one’s immune system is not able to distinguish self from non-self. Being confused, the body is essentially destroying itself. Along with the traditional treatments, I recommend beginning an aggressive nutritional supplement program. In doing so, you are not only building up you NATURAL antioxidant defense systems, but also building up your own NATURAL immune system. I find this helps on both sides of the disease.

    I believe their immune system becomes less confused and begins to recognize “self” again. This means the immune system more readily identifies outside invaders--not attacking “self” as much. In addition, your antioxidant defense system is also built up to balance out the tremendous number of free radicals being produced. This brings the root cause of the damage--oxidative stress--back under control. Therefore, it is absolutely critical that you are on the most potent antioxidant combination available.

    Am I promoting alternative medicine? Absolutely. :)No really, I will never tell you to get off of your medications until you feel you've experienced significant improvement. Nutritional supplementation can always be used in tandem with your present medical regimen and is strictly complimentary to traditional medicine. You would not only tolerate your medications better, but I believe the nutritional supplements actually enhance the pharmaceutical effect of the drugs. In the case of Sjogren’s syndrome, medical treatment is not very effective, which leads me to encourage all people with this disease(my mother included) to give high quality(pharmaceutical grade)nutritional supplementation a good 6 month trial to see if you improve.

    Mermaid...Hope this helps with your self-diagnosis!! ;)
    usanagirl
  4. mermaid01

    mermaid01 New Member

    Thank you both for your response to my question about Sjogren syndrome. I will look into the auto immune vitamins/drugs. Could you give me a suggestion on what the names and where to buy these vitamins? I know this site sells vitamins but not sure what to look for.

    I am not excited about spending more $$, I am sick of this whole thing! Sorry, spouting off again.
    Thanks to both of you for your posts
    Carol
  5. mermaid01

    mermaid01 New Member

    I want to thank you for recommending the lemon drops and the mouthwash and toothpaste; it helps. I am confused about my diagnoses. My doctor told me it may be the medication that makes me very dry, I have a feeling that there is somthing more going on, it may be Sjogrens. I take Nortryptoline, oxicontin, Rhythmol, clonazepam, lipitor and breakthrough meds-Endocet. I guess this dryness could come from my meds. If anyone has something to pass along to me; I'm all ears.
    Thanks again for your help.
  6. mermaid01

    mermaid01 New Member

    I am going to print this info so I can show my husband and doctor. Can you give me some idea what to take? Does anyone know if the medicine's I listed could be the problem?

    My sister has lupus and she has Sjogren syndrom. I think that something like this is now happening to me.

    Thanks again!
  7. Hidn

    Hidn New Member

    There are 2 types of Sjogrens. The one called Secondary Sjogrens is usually what we develop along with RA, Lupus,FM actually any autoimmune disease can trigger it I think.
    I have just had to get "plugs" in my eyes to help keep my eyes better hydrated. It is not a cure, I still have to put drops in all the time. I use Moisture Eyes with no preservatives by Bausch and Lomb. They are the only drops that I do not have an allergic reaction to.
    I also use Biotene toothpaste and the gum too. Nothing really helps completely but every little bit counts.
    Best of luck, hugs from a fellow traveller,
    Denise

    [This Message was Edited on 09/09/2006]
  8. mermaid01

    mermaid01 New Member

    thanks Hidn, I too use the toothpaste and the gargle. My mouth breaks out in sores and it is sore around my teeth, have you experience that? Did your Dr tell you that it may be the meds that is causing the dryness?

    Did you take a test that showed the Sjogren? What kind of tests?


  9. woofmom

    woofmom New Member

    The use of chewing gum and some mouth washes can cause or make symptoms worse. All chewing gums (even regular sweetened) and a lot of mouthwashes contain artificial sweeteners, which are chemicals.
  10. Hidn

    Hidn New Member

    Hi,
    I am so sorry I have taken so long to answer you. I have had my monitor die, and I have not been doing too well. I am downstairs using my sons, but the stairs have been impossible foe awhile now.
    My Rhuematologist did blood tests, RA etc, this was a long time ago and I have forgotten what all they were. But Sjogrens popped up along with Psoriasis (secondary as well) along with CFS, RA , Asthma, Hashimotos. Seems like when one arrives many more syndromes and diseases invite themselves to the party. Yugh
    I am so brain dead I cant seem to remember all the tests but I am sure the web sites for Sjogrens will let you know which ones are for that.
    Take care
    Hugs
    Denise
    PS The plugs do sort of make the tears stay in your eyes a bit longer, but I still need to put drops in, oh well :)
    >


    [This Message was Edited on 10/04/2006]
  11. mermaid01

    mermaid01 New Member

    Thank you all for your comments. I have been chewing gum night and day in order to keep my mouth wet. I didn't realize the gum would exasperate the problem. My tongue would be so dry that talking is a problem. What can I do to keep my mouth moist? I did notice recently that the gum seemed to make things worse.

    I am concerned about what the dryness could do to my kidney, heart, and other organs. Constipation has been a problem too. another very big problem is my memory. I have FM and memory has been impaired; recently it has become worse. It seems like my whole body is dry; even skin. Does anyone know if the Syndrom could make things worse for your whole body? It is scaring me. I do go to a Rhemotologist a couple times a year. I only have catastrophe insurance so all this is getting very expensive.

    I was also thinking about drinks that have electrolytes; does anyone have experience with drinks that has this, and if so, is it helpful? What can I take that adds electrolytes?

    Thanks for your support.
    Mermaid
  12. Lolalee

    Lolalee New Member

    Mermaid, before you spend money on supplements, etc., you might want to have your Rheumatologist or whatever dr. treats you have lab work done to see if you really do have Sjogrens. I was suffering from terrible dry mouth and dry eyes and was almost convinced it was Sjogrens. My lab work showed that I do not have Sjogrens. The dry mouth was caused by a medication I was taking. I decided to stop the med and the dry mouth is gone. My eyes are still a bit dry, but not as bad as before.

    I'm not saying that this is going to be true for you, but you definitely want to be tested.

    Lolalee
  13. Susan07

    Susan07 New Member

    I have both.

    I use artificial tears (no get the red out - it's usually for alllergies) and biotene toothpaste and oral moistener at night.

    During the day since I didn't want to suck on candy and can't chew gum due to partials my doctor recommended sucking on a button.

    I found clear smallish buttons. I wash them with alcohol then put 3 or 4 in the left side of a contact case. Then as I use them and get tired of sucking or am ready to eat put the used one in the right side. Once I go through them all I pour alcohol over them, let them sit for a minuted then put them into a tea strainer to rinse well. I have to use a strainer because I kept loosing them down the drain.

    My sjogren's is also affecting my perotid glands and I now have numerous "bumps" in them. I may have to have them removed some day cause it can be very sore at times. I'm waiting til the last minute because once my sister had hers removed she has to wipe sweat off her neck when she eats.

    Take care and I hope you find what makes you most comfortable. You can google sjogren's and get some good info. Also try it on this site to see what others have said.

    Susan
  14. mermaid01

    mermaid01 New Member

    I know you are right, I will see my Rhym. in a couple of months. I'm glad your test were negative. My sister has Lupus and Sjogren. I have been seeing the same Dr. for twenty years; he will be able to help. I have to go 7 hours one way to see him. We are in the panhandle of Idaho and there are no doctors for me to see. The doctors are a few years behind Seattle.

    I've had FM for most of my life, the Sjogren (if that is what it is) has become very bad, all of a sudden. I have checked my meds and found my Oxycontin can be drying. I've been trying to eliminate those; I've gone from 10 per day to 5 oxy. The drying condition became severe after the 5 per day??? We shall see. Thanks for your input.
  15. RicksChic

    RicksChic New Member

    I suffer with severe dry mouth to the point that I eat ice all day long at work, because if someone asked me a question, my mouth would dry up so fast that I literally cannot talk...try talking without moving your tongue.

    I KNOW that mine is a side effect from a few drugs. My husband has the same problem from his meds, (Asthmatic).

    If it's safe for you to do an elimination test, you could do that under your Doctor's supervision if you really want to find out. If not, keep those lemon drops and eye drops handy!

    Hope you find the answer,

    Kim
  16. mermaid01

    mermaid01 New Member

    Thanks, I know exactly how you feel, I own my own business and it is important for me to talk without sounding like I'm gumming my words. Gads...