Patient Comments: Sjogren's Syndrome - Symptoms

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

Comment from: Molly, 75 or over Female (Patient) Published: April 04

I experience extreme fatigue. My mouth is so dry especially at night and my mouth burns. My eyes aren't too bad but the fatigue I find very debilitating and would like to know what I could take to give me energy.

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Comment from: Barbara, 55-64 Female (Patient) Published: April 04

When my Sjogren's syndrome was discovered, I started hurting in my hands and feet in my early 30's. Now, in my 60's, my entire joint system hurts every day. Nights are the worst, trying to rest while my joints hurt. My eyes are very dry, but my mouth isn't. My skin and hair is dry. I take prednisone daily, with extra dosage when the pain gets really extreme. I feel bad every day. And sometimes I feel like I cannot walk from one room to the other. I wonder how I will be next year, or the next.

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Comment from: momto3, 35-44 Female (Patient) Published: February 09

I have had Sjogren's for several years and have found that mineral oil is a huge relief for the dry skin issues. I use it on every area that bothers me, and it makes a tremendous difference. You can find it at any local drugstore. It is relatively inexpensive, especially after trying almost every product I could get my hands on. Take it day by day, and try to stay positive!

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Comment from: tturn31, 45-54 Female (Patient) Published: January 31

I found out that I had Sjogren's syndrone about eight years ago. The doctor that I was seeing didn't act like it was anything to worry about. In the last year or so, my health has taken a turn for the worse. I always have dry eyes. I'm 48, and I feel like 88. I'm in pain all the time, and about six years ago, I had times when my right side up under my ribs hurts really badly for a few days at a time. It seems to be getting worst lately. But doctors can't find out why.

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Comment from:, 45-54 Female (Patient) Published: January 11

I have had Sjogren's for the past six years. I'm 51 years old. It was confirmed after having a lip biopsy ordered by my treating Rheumatologist. For the past several years I seem to being worse and worse. My tear ducts are sealed in both my eyes but continue to having redness and gritty feeling, my mouth is so dry my pills no longer help. I sip water day and night. I can't swallow food without washing it down with water. Yes, I also feeling like I'm choking. Bumps and lines are appearing on my inside bottom lip due to blocked glands. The blood vessels in my legs are leaking blood, which is happening weekly now. My rheumatologist referred me to a Hematologist for more work up. I'm also losing weight rapidly which scares me. During all of this testing my beloved rheumatologist passed away. It will be tough filling his shoes. I'm in limbo!

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Comment from: csi_babs, 25-34 Female (Patient) Published: January 10

I first started with some joint pain, I also had really bad menstrual cycles. I then was diagnosed with fibromyalgia then my allergies went haywire. My Neurologist sent me to a Rheumatologist she did testing on me and found out that I had Sjogren's. All the while the fatigue was horrible. I was having a hard time staying awake during the day and I was in a lot of pain and joint inflammation was unbearable. I have dry mouth all my life so it wasn't an issue until I couldn't swallow my food properly. Here in the last few months my dry eye, mouth, and nasal passages got worse, but I have days where the disease really takes its toll and then I have great days too. I try to stay positive and healthy but it so hard being the mother of 3 boys but I try for them and my husband.

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Comment from: sassymiley, 65-74 Female (Patient) Published: June 21

I been running to doctors for years only for one to say it was all in my head. Even my family believed that. Dr put me on anti depression meds and now I can't get off them. I feel tired all the time and ache all over too. Now my ankles are swollen and hurt when I walk. My eyes are the worst .Burn or itch all the time and no drops have seemed to work. I am now having trouble breathing and have developed a cough. Finally a DR took some cells from my mouth and diagnosed me with sjogrens. My teeth seem ok. No one else in my family has this.

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Comment from: sandraruby, 65-74 Female (Patient) Published: June 15

Extreme tiredness, problems with my pancreas, dry eyes, dry mouth sore glands, slow thyroid and general feeling of lethargy. Vaginal dryness resulting in frequent bouts of thrush and water infections.

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Sjogren's Syndrome - Describe Your Experience Question: Please describe your experience with sjogren's syndrome.
Sjogren's Syndrome - Prognosis Question: What is the prognosis for your Sjogren's syndrome?
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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