Patient Comments: Sjögren's Syndrome - Symptoms and Signs

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

Comment from: Mari, 45-54 Female (Patient) Published: January 23

Within the past few years I've been experiencing increased dry eyes, mouth, nose, skin, decaying teeth and approximately two years ago increasing pain in my joints and bones. I was diagnosed with Sjogren's syndrome by my rheumatologist about a year or two ago. The arthritic pain has gotten to the point that it interferes with my daily functioning. As of late, I attribute it mostly to the cold weather. It's unbearable at night. As much as the dry eyes, nose, mouth, etc. affect me, the arthritic pain is the worst. It's after 2 am and the only reason why I'm still awake is because of the pain throughout my entire body. I'm trying to be hopeful, but the chronic pain is taking its toll physically and mentally.

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Comment from: Pat, 65-74 Female (Patient) Published: April 01

I don't know what to do to stop mouth problems from Sjogren's syndrome. My lips inside mouth will swell up, and at the same time my tongue will swell. My gums swell up. I can't chew. I can only swallow pudding, yogurt and water. I don't know what triggers this. I am going to the doctor tomorrow. This has happened a couple times in the past two years.

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Comment from: Lizzieabe3, 45-54 Female (Patient) Published: January 05

I have rheumatoid arthritis (RA) and was misdiagnosed for years. The pain is getting worse each year and I feel I have had to diagnose myself. I have had Sjogren's for 2 years now and my mouth gets inflamed after any kind if illness. My gums are blood red, teeth hurt and when I floss everything bleeds. I have canker sores, dry eyes, swollen tongue, it is scary! My RA doctor put me on methotrexate. Everything seems worse in the mornings. If I sit too long then everything hurts, and it's hard to get up. I am thinking of going on the Paleo diet.

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Comment from: Les G, 65-74 Female (Caregiver) Published: October 30

My wife was diagnosed with Sjogren's syndrome stage II about 8 years ago. As her condition progressed she became a real night owl; cannot sleep at night and sleeps all day. It's like her diurnal clock has been shifted 12 hours. She awakes 4 to 6 pm, in the beginning of her Sjogren's pains, and takes her first daily set of prescription pain medicines. She has no appetite and will just snack through the night. Her pains increase as the night passes and she takes her second round of her prescription pain medicines, and then go to bed around dawn.

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Comment from: Marta, 55-64 Female (Patient) Published: October 23

I was diagnosed with Sjogren's syndrome over three years ago. For a year prior to diagnosis I saw 7 eye doctors because no one could figure out what was wrong with my eyes. They were very red, sore and it was hard to see. I take 2 tablespoons of cod liver oil a day and use Restasis eye drops twice a day, artificial tears throughout the day and I take pilocarpine 3 times a day. I chew a lot of sugarless gum. My mouth dryness has gotten a lot better. When I was first diagnosed my mouth was so dry I could hardly talk. I do have a lot of skin issues and use cream (not lotion as it has alcohol in it) several times a day. I have a good rheumatologist, dermatologist and primary care.

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Sjögren's Syndrome - Describe Your Experience Question: Please describe your experience with Sjögren's syndrome.
Sjögren's Syndrome - Prognosis Question: What is the prognosis for your Sjögren's syndrome?
Sjögren's Syndrome - Treatment and Diet Question: What treatment has been effective for your Sjögren's syndrome? Have you made any dietary changes, and have they been effective in managing your Sjögren's syndrome?

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