Patient Comments: Sjogren's Syndrome - Describe Your Experience

Please describe your experience with sjogren's syndrome.

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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Published: July 09

I was diagnosed with Sjogren's syndrome about two, almost three years ago, and I just recently have started having a lot of problems with my symptoms. I am extremely fatigued and weak. My eyes always look like I've been crying because they get so red and dry. I try to exercise and stay active, to help with the arthritis pain, but I am just 36 years old, and it's hard not to get down because I used to be so active and athletic. I have a family history of autoimmune problems working against me too.

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Published: July 02

My mom has Sjögren's Syndrome (I believe it is secondary since she also has RA). She suffers unbelievably from dry eyes, pain, dry eyes, and sensitivity to light. She is 77 years old. Restasis is one medication she recently began taking but it doesn't seem to be helping. Fresno, California

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Published: June 26

I have 3 autoimmune problems: Crohn's, Sjögren's and Fibromyalgia. The Crohn's has been with me the longest...36 years. Fibromyalgia and Sjögren's appeared about the same time and both are awful. The dry mouth is a 24/7 constant, awful irritant that is getting increasingly worse. Biotene does nothing. Having cotton balls in your mouth all day, every day with no hope in sight brings me to my question as to whether there is anything out there?

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Published: June 09

My symptoms are the usual, dry eyes and mouth. I have a real problem with my eyes; they seem so blurry and now they are so sensitive to the sun and haze. I use all kinds of drops and still have a lot of problems with them. I use Biotene for the dry mouth, and this brings some relief, along with the drinking of a lot of water.

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Patient Comments

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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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