Patient Comments: Sjogren's Syndrome - Symptoms

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

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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Comment from: butterfly, 75 or over Female (Patient) Published: January 25

About 2 years ago my eyes were so dry I had to open them manually every morning and the eye doctor diagnosed me as having Sjogren's. I use restasis at night one drop in each eye and it has helped a lot - started with 1 drop 2 times a day. My mouth and throat are always dry and I either drink water or spray my mouth with water as a temporary relief. Now I am having strange intermittent pains in my knee joints, fingers, back, hip joints. I just went to the rheumatologist and started physical therapy - hope it helps.

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Comment from: Kaamara, 45-54 Female (Patient) Published: January 25

I'm not diagnosed but my acupuncturist mentioned Sjogren's syndrome when I last saw him. According to Chinese medicine it's just a bunch of symptoms and not a diagnosis. Anyway I found it interesting, I have practically all the symptoms connected to SS and a few more. I'm also very sensitive to stress, have concentration difficulties, and I'm prone to worry. I'm slow to adjust when travelling for example and need lots of time to reflect on things or I get really confused.

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Comment from: 55-64 Female (Patient) Published: January 25

I am 63 years old. Looking back now, I have probably had symptoms for years. I have dry, gritty feeling in my eyes. I have a dry mouth, gums, tongue. I have had sores in my mouth and my tongue is a disaster. I have had something else that I did not know could be related. I have vaginal dryness that I thought was due to my age and lack of sex. When I get my pap smear, it hurts terribly. The last one, I actually bled a little. I have asthma and chronic bronchitis. Now they think I have COPD. I use oxygen at night, and I take breathing treatments twice a day. Also, I have had GERD for years.

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Comment from: Alysa, 45-54 Female (Patient) Published: January 10

I haven't been diagnosed (yet) but have suffered dry eyes since teenage years. I now suffer joint pain (since early 30's) and dry mouth and nose lining, get mouth ulcers frequently. My diagnosis so far has been osteoarthritis, arcoxia prescribed). I'm female, 52, and for the last three years have been "menopausal", with hot flashes and suffering from a dry irritating scaly skin rash, often linear, that no one has pinned down. All this together makes me think it could be Sjogren's.

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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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