Patient Comments: Sjogren's Syndrome - Describe Your Experience

Please describe your experience with sjogren's syndrome.

Comment from: 45-54 Female (Patient) Published: September 02

I was diagnosed with psoriatic arthritis about six years ago. The itchy, burning eyes and dry, sticky mouth started about 18 months ago and, having been diagnosed with Sjogren's syndrome, I assumed it was just about the eyes and mouth and was completely unprepared for the burning skin and sweating, the difficulty swallowing and the general feeling of being unwell and tired all the time. I have eye drops six times a day and a mouth spray but, along with the NSAIDS for the arthritis, I now have to have Omeprazole for chronic heartburn and can't bear any form of spicy food. My sense of smell has all but gone, and I swear my memory has suffered as I sometimes struggle to finish a sentence and find it hard to concentrate for any amount of time. This has got to be the worst thing I've ever had and it's so depressing to know that there's no cure, only palliative care.

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Comment from: Tess, 45-54 Female (Patient) Published: August 21

I was diagnosed with Sjogren's about seven years ago. I know that this sounds kind of weird, but after about 30 minutes inside a store, I turn bright red on my face and arms, and I become very hot. Eventually, I have to leave.

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Published: July 30

I have had sjogren's syndrome for the past 20 years and have all the "things" that go along with the disease. My teeth are very bad and this is after 17 root canals and porcelain replacements. Now I am told that I need to have implants at an unbelievable cost or have the teeth pulled. I saw a dentist yesterday who says that all the teeth should be pulled because the amount of metal in my mouth is the cause of some of the problems, such as mercury.

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Published: July 22

I'm a few days shy of a year with this diagnosis. It's hard to believe. I started out with the severe dry eyes. I was seeing an eye doctor for seven to eight months. I finally went to my primary doctor and asked if I was "depressed" because I was so run down all the time. I had a 1-year-old and 4-year-old. Who wouldn't be run down?! It wasn't until I mentioned my ongoing eye problem that my doctor mentioned Sjogren's syndrome to me and sent me for lab work. It was confirmed the following day. I look back over the past eight or so years and there were things that all come together now. Dry lips to the point that I could no longer wear lipstick, etc. I feel on most days that I am a 33-year-old female trapped inside an elderly body! Less stress works best for me. I gave up a very stressful ICU nurse position for a school nurse job. Plaquenil has been a life saver. I feel 10 times better this July compared to last year.

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Published: July 17

My little sister (25) was diagnosed about 3 years ago with some auto immune disease but they can't say it is Sjögren' s because she doesn't have the positive test for Lupus. I have had dry eyes since 2003 when I had an ocular ulcer, but it didn't get severe till this year. When I went for my annual eye exam I complained about it and he said that my eyes were severely dry and because my sister had it that I should get tested also. I was diagnosed July 11th with Sjögren's, they had no problem confirming it. I wake up most mornings like I spent the night before screaming or I feel like I have strep. I didn't want to be positive. Reading others comments actually scares me. I have started getting dull headaches in the last week or two and nothing seems to make them better. It worries me that it has gotten worse so quickly. I have also noticed the fatigue, sometimes it just seems like I can't deal with things and I have to rest right away. But at least it might help my sister get her answers. I am only 28 and I don't want to be "elderly" before my 40th birthday. It is funny that something that seems so minor: dry eyes, dry mouth can make the quality of life so difficult.

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Published: July 10

I just recently discovered I have Sjogren's syndrome. Three years ago, I lost my smell for no apparent reason. I went to several specialists and could not get an answer. Two years ago, I developed a high fever and was in the hospital for more than 30 days. The doctors did not know why I had this fever. Just as mysteriously as the fever came, it disappeared. I had one doctor who was seeing me because my doctor was not on call and he ran a series of tests and concluded that I had some form of an autoimmune disease. I did not pursue the matter anymore because I had accumulated a number of medical bills. However, in the last three months, I have been extremely tired. I have a new doctor who referred me to a rheumatologist, and he took a series of tests, one of which came back positive for Sjogren's syndrome.

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Sjogren's Syndrome - Symptoms Question: What symptoms and signs did you 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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