Sjogrens Syndrome?

Discussion in 'Fibromyalgia Main Forum' started by goodma, Sep 28, 2005.

  1. goodma

    goodma New Member

    Does anyone have Sjogrens Syndrome? If you do can you let me know what types of treatment is used. I was tested for this and will find out by the end of the week if I have this autoimmune disease. Is it linked to Fibromyalgia? I have Fibromyalgia, and have come to terms with living with it in my daily life. I never let it be the reason I don't do something or trying to do something. I've found this attitude helps tremendously.

    Any information would be appreciated.

  2. JLH

    JLH New Member

    Yes, I have it. My rheumy told me that it was linked more so to Lupus than Fibro. I also have lupus--the systemic type.

    There are really not that many treatments for Sjogrens. Really, knowing you have it is about it! It just puts a name on your conditions!

    It causes dry eyes and dry mouth. My doc just told me to get saline drops for my eyes and put them in 2-3 times a day, and there is a few types of moisturizers for your mouth. I think someone has a post out on the dry mouth stuff now.

    It also causes my parodid glands to swell a lot. These glands are located under your ears, under the jaw line. When these glands are swollen, they press on my teeth (jaw teeth) which gives me the feeling of a severe tooth ache. According to the way the swell, it will also sometimes cause me to feel like I have an earache--because of all of the pressure on my ear. But .... nothing you can do about either one of those, either!

    Google on it and you can find many articles on it that will be informative for you.

    Sometimes, if your glands are really giving you a lot of pain, they will do an ultrasound on them to see if they have stones in them.

    I had quite a few root canals done to get rid of the pain in my teeth BEFORE I found out that it was caused by the swollen parodid glands!! Ugh!

    Good luck,

  3. goodma

    goodma New Member

    You described the swelling in my face that has caused me an unbelievable toothache. I knew that it was not my tooth or needing a root canal as I could chew and bite on that side without any pain in my tooth. I've also felt the pain and pressure in my jaw and ear. I also have TMJ, but knew it wasn't that causing my pain.

    I'll google it.

  4. moonbeam032365

    moonbeam032365 New Member

    I have Sjogrens and my eyes ,mouth, and skin are dry. My eyes i put several drops of tears in them they drive me crazy. I was told i have RA,Cfs, and have symptoms of Fibro. And i'm thirsty all the time.
  5. Alicensk

    Alicensk New Member

    I was diagnosed with SS almost 4 yrs. ago and there are things you can do to be more comfortable, though there is no "cure." Symptoms come and go and not every patient has trouble with the same ones. I often feel good for a couple of weeks and then I'll have a couple of not-so-good weeks. One of the worst symptoms for me is that on the bad days I feel so tired. But that's the way it goes.

    I have painful parotid glands occasionally -- saliva is too thick and causes a temporary blockage. For my pain (short, sharp, stabbing -- like someone's repeatedly sticking a knife in or behind my ear), I find that massaging the area or applying hot compresses help most times. If neither helps, I take 3 Advil four times a day to handle the discomfort. Usually I'm fine in a couple of days. Also, when several of my teeth hurt at the same time, I know it's not really my teeth that are the problem.

    Here's how to massage the painful parotid gland area: stroke FIRMLY with your thumb and index finger along the jaw bone from its upper tip behind your ear and come down about 3 inches; repeat for several minutes. This tip is from the New Sjogrens Syndrome Foundation Handbook and was worth the cost of the book for me. The latest version of the book doesn't have this tip, unfortunately.

    My SS is quite mild compared to some people. I have
    moderate muscle and joint pain, which I handle with 2 Aleve in the a.m. and 2 in the p.m. Have been quite good lately, though, because I have taken v. little since late July.

    I've taken Plaquenil since my diagnosis in late 2001, and my rheumy increases or decreases the dosage depending on how I'm doing. Quite a few rheumatologists prescribe it for SS because they think this medication slows the progression of the sydrome and it does seem to have helped me. It took almost 5 months before I noticed an improvement. So if your dr. prescribes it for you, hang in there. And always take it on a full stomach. Right now I'm on 300 mg of Plaquenil daily (half-pill in a.m. and full one in p.m.).

    My rheumy added a prescription for Colchicine (an anti-inflammatory often used to treat gout) in May 2004 and increased it last November when several fingers of my right hand became quite painful because of Raynaud's, which is quite common in SS patients. I'm fortunate that neither the Plaquenil nor the Colchicine cause gastric upsets for me, as they do for many people. My fingers improved, anyway. Also, in cool weather, I always wear gloves, because cold makes the fingers hurt -- I use oven mitts when getting stuff out of the freezer. On cool mornings in the winter, I wear gloves at my computer; they have the tips of the fingers cut off so I can type! Whatever - it works.

    My eyes are not extremely dry. I use Systane drops during the day -- usually about 4 times -- and Refresh LiquidGel at bedtime. If my eyes are really burning and light sensitive (about once every 10 days), I use v. warm compresses to stimulate the oil glands and then use CelluVisc drops -- they're really thick and you can't see
    much for about 10-15 minutes, but they help at such times.

    I take 5 mg. of Flexeril a couple of hours before bed, because it helps me sleep and relaxes my muscles. I used to wake up stiff as a board. I also use an electric mattress pad (except in hot weather) and the warmth helps my muscles relax.

    I also take, on my rheumy's advice, 150 mg. of CoQ 10 and 8 capsules of Black Currant Seed Oil (good source of GLA) every day. I don't know how much one's diet helps, but I add 2 heaping T. of flax seed meal to my morning cereal and eat omega-3-rich foods often (walnuts; avocados; salmon; sardines). Omega 3s are also good for your heart - yay!

    Well, I didn't mean to keep going so long with this, but it sounded as if you didn't think anything will help you with SS and I wanted you to know there are things that can make you feel somewhat better.

    Alice N.
  6. getfitat40

    getfitat40 New Member

    But my new rheumatologist prescribed Salagen (pilocarpine)before the lab work was complete. I do not have dry eyes at this point but suffer from excessive dry mouth and dry skin. I have been on the salagen only 4 days but it really seems to help. I also use Biotene gum for on the go releif. The pharmacist had to order it, they don't keep it in stock but you don't need a prescription. My

    Mother has Sjogrens and uses restatisus (spelling?) for her dry eyes. I thought it was linked to Rheumatoid Arthritis not Lupus but maybe we are all right and it linked to a lot of auto immune diseases. Good luck!

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