Patient Comments: Sjogren's Syndrome - Symptoms

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

Comment from: kay, 25-34 Female (Patient) Published: March 25

I am 33 and I have been going through hell since I turned 30, it started with kidney stones and I have had 8 surgeries and one loss of my husband due to the pain with being touched. He wasn't strong enough to see me go through it. I was in the hospital and seeing doctors that didn't care about me and never took the time to do the right test so then family started to say it was in my head and then at last I found the doctor I have now and he did all the right tests and is now helping me deal with everything. He sent me to a rheumatologist and he made me feel like a guinea pig so I spoke with my pc doctor and he could see my frustration and new that it's time for someone who could explain to me what I am going trough. Then I got hit with more bad news not only do I have this but Lyme disease too. Wow I am in for it, but hopefully this will help the next that no matter what you go through you got to keep going, fight, fight, fight.

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Comment from: wendy t, 55-64 Female (Patient) Published: March 11

My eyes are very dry and it often seems to drive me to distraction. I'm worried that they are going to keep on getting worse and so I won't be able to see to do many of the things which I enjoy.

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

My symptoms began when I was 44 years old. I was 48 when diagnosed with Sjogren's by my rheumatologist. I am dealing with the dryness, but recently specific joints feel as if they are on fire (extremely painful). I try to exercise minimum of 4 per week, but the quality of my exercising has decreased dramatically. I can barely move. I have weird rashes, patchy areas of skin that itch tremendously and fall asleep at work. I am on synthroid, plaquenal, nuvigil, ibuprophen, evoxac and tons of antacids, for my newest symptom of nausea.

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Comment from: helen, 45-54 Female (Patient) Published: February 14

The past year I have suffered with dry eyes so bad that they have put permanent plugs in my upper and lower tear ducts sadly I have only had 2 months relief, but it's the joint pain that I find hard to cope with and the tingling and weakness in my arms.

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Comment from: Debbie, 45-54 Female (Patient) Published: January 28

I was diagnosed 4 years ago after 10 years of suffering, family doctor sent me to a rheumatologist. Have Sjogrens, Fibro, Osteo and cardiac issues. Plaquinel did not work for me. After 1 year liver enzymes sky rocketed. The sinus migraines and jaw pain is unbearable. The exhaustion and glandular pain is horrible. I am finding new strength that I never thought I was capable of. With cardiac issues I cannot take a lot of medicines to ease pain. Throwing up is an accepted behavior I never thought I could live with, but it happens weekly. I belong to Sjogren's Foundation and they have given me priceless info, my first seminar I did a lot of crying among others, so many people suffered like myself and worse. I never smoked, no rec drugs and born a vegetarian :) I am very active. So I pray daily for my Sjogren's patients. God Bless you all.

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Comment from: marie, 75 or over Female (Patient) Published: January 27

I was 76 when I was first told I had Sjogren's syndrome; my mouth burns all the time and I am very dry. Drinking plenty of water and chewing gum helps my condition a lot.

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Comment from: Mal, 55-64 Male (Patient) Published: January 25

I am male in my early 60's diagnosed about 12 months ago. I use to tell my doctor and friends I was getting hot flushes, "you're mad" general consensus, men don't get hot flushes. I also had swollen and painful glands in my jaw. Ultrasound found nothing. I was told by one doctor just part of ageing, move on. Went to another and had blood tests, behold sent to specialist and told yes you have Sjogren's. A lot of things now make sense, persistent cough, GERD, joint pains, fatigue and mental issues (an incredible fear of heights). Those of you with SS know the symptoms. The good thing for me was now I know I'm not "mad" and all my medical issues now make sense.

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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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