Patient Comments: Sjogren's Syndrome - Symptoms

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

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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Comment from: Justin, 55-64 Female (Patient) Published: October 15

I think there is a big misunderstanding to treating sprained ankles (stretched or torn ligaments). This is just an injury and your body's natural remedy swelling. Your body increases blood flow to the injury site to repair the damaged tissue (adding heat will also draw blood to the area). Why doctors promote practices to reduce swelling is beyond me. I'm treating my sprained ankle (right now, as I type this) by sitting here with my foot below me; moving it from time to time. I'm eating a high protein/vitamin C diet and that's it. When I walk, I try not to reinjure myself.

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Comment from: Anxious, 45-54 Female (Patient) Published: October 13

I was diagnosed with Sjogren's syndrome about a month ago, but have been experiencing symptoms for about 2 years. I was relieved to at least have a diagnosis; everything makes sense now. I have been unable to work for the last 8 months with uncontrollable asthma, and sinus issues. My parotid glands are giving me a hard time. I have been swollen and in pain for about two weeks now. I also feel very fatigued and achy. My initial appointment with the rheumatologist is in February 2016, so I feel anxious. I also feel like many other glands are tender; it's just weird. I try not to worry too much, but it's almost inevitable.

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Comment from: Bubbles, 45-54 Female (Patient) Published: March 10

I was diagnosed with Sjogren's syndrome when I was 41, and I lost all feeling in my face. I had suffered from many eye infections and have done so over 20 years (cold sore attacking the Iris). I found all of my joints very stiff swollen and very painful. I see a specialist every 3 months. I am on Plaquenil 400 mg daily. Some days I just can't get out of bed. I am sorry to say but I took up smoking pot to relieve the pain. I have just recently lost my Left knee so I have had total knee replacement (TKR) with the next one due in 3 months' time. My doctor injects my joint on a regular basis. I am unable to work due to many reasons including long standing, long sitting and stairs. I am now walking with a walking frame. I really hope someone can find a cure for this dreadful condition. People don't understand or don't wish to understand the issues behind this disease.

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Comment from: STEVIET, 55-64 Male (Patient) Published: May 11

I am a 58 years old male. I have been sick for 7 months with a weight loss of 65 lb. The taste of food sickens me so I do not have the desire to eat, but I do not vomit. I am fatigued and sleep all the time. I have abdominal pain, irritable bowel syndrome, and diarrhea. I have thrush, and diagnosed with dry eyes and mouth. I have pain throughout my body. I am so depressed, I don't want to live like this and no one can seem to find what is wrong. I have had a million dollar work up including a PET scan. I felt sure I had Sjogren's syndrome, until my ANA blood work RA (rheumatoid arthritis) tests, all negative, homogeneous 1:40, negative. I don't know what to do. I do not want to live like this. It is tearing me apart and my wife, and killing our marriage.

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Sjogren's Syndrome - Describe Your Experience Question: Please describe your 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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