Patient Comments: Sjögren's Syndrome - Symptoms and Signs

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

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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Comment from: Sandra, 75 or over Female (Patient) Published: August 12

I was diagnosed with Sjogren's by my eye doctor over 30 years ago but have been exceedingly lucky with a mild case mainly with dry eyes & mouth. Only now, retired to southern Mexico, is it getting worse. I use a tens machine on my feet when they get to burning (neuropathy) and have noticed that I seem more emotional. Have taken antidepressants off and on most of my adult life. The last few days I have developed a really bad, deep, ache across my back at my waistline. I wish all my fellow sufferers wellness!

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Comment from: p k jena, 25-34 Male (Patient) Published: July 02

I am sjogrens syndrome patient. i have recurrent paratitis and redness of eye in past 1-2 years. i have also feel pain on my joints like ankle, knee, neck, back pain, heep and wrist also in past 2 years.

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Comment from: tanner2604, 55-64 Female (Patient) Published: June 03

I was diagnosed with Sjogren's syndrome about six years ago. It's been a pretty rough ride. I'm in my early 60s and have been denied disability. I own a small business and work part-time in retail just so I can pay for my meds. I now am going through a new phase with lumps forming in my joints.

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Comment from: sunshinelady, 45-54 Female (Patient) Published: April 19

I have had Sjogren's for 27 years. It started out with dry eyes and mouth. My tear ducts have been cauterized. I have a mouth full of fillings. 5 years ago I had Non-Hodgkin's Lymphoma in my left breast found as calcifications on mammogram. I was treated with radiation. I'm clean now 5 years later. During testing for the lymphoma the doctor found I have inflammation in my lungs also. I have been dealing with cough for a while. I'm now on Prednisone. I get lots of sinus infections too. I am tired most of the time but I just keep going and am still working full time.

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

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