Patient Comments: Sjogren's Syndrome - Describe Your Experience

Please describe your experience with sjogren's syndrome.

Comment from: Debi, 35-44 Female (Patient) Published: April 05

I was diagnosed with Sjogren's syndrome in 2008 and we are still figuring out what triggered it. My mother has non-Hodgkin lymphoma and she is at Stage 4, which is the last stage. The doctors are keeping an eye on me for lymphoma. Some of my days are rough having Sjogren's, but I try to make the best of it.

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Comment from: mrshahc, 45-54 Female (Patient) Published: March 26

I was diagnosed with Sjogren's and hypothyroidism after a hepatitis C treatment in 2004. The past four years, the Sjogren's has taken over my active life. I was into daily cardio and strength training, along with bicycling and Pilates. Three years ago, my shoulder, elbows, fingers and knees started to hurt, especially when I moved up and down. I feel pain with every movement. It seems like Sjogren's has taken over my life.

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Comment from: TKamp, 55-64 Female (Patient) Published: March 13

I was diagnosed about 5 months ago. I had a lot of symptoms, but just ignored them because they were so strange that I thought my doctor would think I was crazy. I used to walk a lot for exercise and I would be unable to swallow for lack of saliva and it would make me panic. My lips are always chapped and flaky and the corner of my mouth cracks. Also I cannot eat certain vinegary or acidic foods like salsa or salad dressing because they cause my tongue to burn. I am always stiff with joint pain and have severe tingling in my legs with stabbing pains in my feet. I had to have 5 teeth bonded at the gum line because my gums receded. I have been using Biotene mouthwash,toothpaste, mouth spray but they don't really help. My doctor said to suck on sugarless lemon drops,but then I develop a thick brown goo on my tongue and that is not very nice to look at when talking to someone.

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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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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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