Patient Comments: Sjogren's Syndrome - Symptoms

What symptoms and signs did you experience with Sjogren's syndrome?

Comment from: lexigirl, 55-64 Female (Patient) Published: May 26

I was experiencing a lot of joint pain. My blood work came back showing I had Lupus but I was advised by my gp that this could be a false reading. I went to a Rheumatologist and after undergoing several tests, it was determined that I have Sjogren's Syndrome. In addition to dry eyes and mouth and joint pain I am now seeing a Pulmonologist because I am having trouble breathing whenever I am the least bit active. I have had anxiety attacks because I felt like I couldn't breathe. CT of my lungs shows calcified and uncalcified nodules in the tissue of my lungs. Also, I can't take the medicine prescribed (azathroprine)for Sjogrens. It makes me vomit, even when I take with food.

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Comment from: Carolyn, 65-74 Female (Patient) Published: May 24

I am 72 and suffered with fibromyalgia for 20 years. Now I have Sjogren's syndrome. I experience fatigue, depression, and I need to take Ambien to sleep. Also, I have aches and pain. I have a pain under my right breast, so I quit wearing underwire bras, but that didn't help. My mouth feels as if it is on fire. It burns! My eyes are fine, so far. I have lost 20 pounds, which is a good thing. I am lightheaded though, and I get dizzy. I also get night sweats. I went through the night sweats years ago as well. I golf and try to keep busy.

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Comment from: cc, 35-44 Female (Patient) Published: May 20

I was diagnosed with Sjogren's syndrome about 10 years ago, but I was having the symptoms longer than that. The fatigue is the worst for me and then the joint pain. I find that if I overdo it with activity is when I experience the most joint pain. I was in remission for about five years until I recently changed jobs and have to work about 14 hours a day. These hours have been extremely difficult, and the fatigue is overwhelming. I am going to have to balance my life and the stress level a lot better if I want the symptoms to decrease.

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Comment from: SSMomOfTwo, 25-34 Female (Patient) Published: February 17

I have just turned 30 and have been finally diagnosed with Sjogren's syndrome. I had been thought to have MS, HIV, and a slew of other diseases. My ENT doctor diagnosed me correctly after seven years of testing. It's been a struggle. My symptoms initially were severe joint and muscle pain and tremors after very little physical activity. I have progressively deteriorated, losing 35 pounds in only four months last year. All of my teeth are fake, or close to being pulled. I lost 10 teeth in three months. The fatigue is currently horrific! One of my relatives thought I was a drug addict. That made me cry, and I no longer speak with him. As if living with chronic disease isn't bad enough. Young females with children need a good support system around them, as well as men who have to support a family. This disease takes its toll, but it is manageable with a loving family around to lend a very much needed hand.

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Comment from: Dave Doches, 55-64 Male (Patient) Published: January 05

I am 55 year old woman. I have had terrible coughing problems and extreme tired symptoms for the last 3 years. I thought they were sinus problems. Had sinus surgery, did cultures. It was better for a short while, but coughing always came back. I had debilitating coughing, but no irregular breath sounds chest and x-ray clear. Not much sputum produced. ENT finally suspected Sjogrens and had a lung doctor look down my lung with a camera; I was oozing blood all along my airways. Started taking prednasone and Plaquenil and resting. Did I mention extreme tiredness. Finally I thought maybe I am not crazy after all. I was good for about 3 years for the most part with only a few flare ups. This past summer my director position of respiratory care in a major hospital got done away with. Naturally I had a flare up that has lasted until December. I am finally getting better for now. It's going down on prednasone. I have found if you have a coughing problem like mine use albuterol and racemic epinefren. They are both old drugs. The racemic reduces the membrane swelling and I can finally breathe better and reduce my cough. Also if you get some urine dip sticks and can cough up something it usually will show blood on the dip stick from your sputum. I have this disease. It hurts, makes you tired makes you swell makes you cough like crazy and everybody looking at you thinking you are just goldbricking. Oh well all I can do is try to live with it. Thank God for my wife she has been my rock, good luck to you all.

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Comment from: bing research, 65-74 Female (Patient) Published: January 04

I was diagnosed over 1 year ago with Sjogrens. I am very frustrated. My eyes are dry, itchy and they burn. I use systane eye drops as needed. My lips are so dry and cracked. I've tried all balms available with short term relief. My mouth is very dry and I need water to sip on with each bite of food I eat. Chocolate and nuts really tear up my mouth. It is so inflamed when I try to eat these foods. I've lost 30 pounds (the hard way). My mood is nasty. My husband says I am not the person he married. Yes I get bitchy! My body aches as I have this degenerative arthritis also. Fatigue is depressing. I was on the move much more before all of these syndromes started. Just live with it and keep busy as possible. Lots of luck.

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Sjogren's Syndrome - Describe Your Experience Question: Please describe your experience with sjogren's syndrome.
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Sjogren's Syndrome - Treatment and Diet Question: What treatment has been effective for your Sjogren's syndrome? Have you made any dietary changes, and have they been effective in managing your Sjogren's syndrome?

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