Patient Comments: Sjogren's Syndrome - Symptoms

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

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: Katdog, 55-64 Female (Patient) Published: March 03

I have burning lips, sore tongue and hot gums because of Sjogren's syndrome. My eyes are constantly blurred. I have tear duct plugs and use Restasis 3 plus times a day. It never goes away and I never have a day without it. Body aches do respond to daily SSRI (selective serotonin re-uptake inhibitors) and Celebrex along with many supplements. Hope this helps someone.

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Comment from: Gina, 35-44 Female (Patient) Published: February 23

I have had dry eyes for decades. So much so I was unable to wear contacts. I remember reading a list of symptoms for Sjogren's syndrome back when I was in nursing school and said to myself, 'I bet I have that.' I have dry eyes, fatigue, dry skin and nails, and hair loss at times. Those are the main symptoms. Somewhat dry mouth, but not terrible. I just need to sip fluid but I still have good saliva production as per doctors.

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Comment from: goiter girl, 35-44 Female (Patient) Published: August 15

I have Graves' disease and Sjogren's syndrome. It took me 6 years to get a diagnosis. I have joint pain, ear pain, dry mouth, increased cavities, dry eyes, extreme fatigue, dry skin, hair loss, and depression. A friend of mine suggest trying the autoimmune protocol/Paleo diet. It is quite restrictive. I followed it for 3 weeks without fail and felt great and even woke up in a puddle of drool, sounds gross I know. It is not a cure but it did lessen my symptoms. Many books out there I like practical Paleo and the autoimmune cookbook. It takes an effort which is hard with our fatigue, but it is worth it.

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Comment from: QuickDigits, 65-74 Female (Patient) Published: March 11

I am a 65-year old female. I was diagnosed about a month ago with SLE (systemic lupus erythematosus), mixed connective tissue disease and Raynaud"s syndrome. My rheumatologist diagnosed me. The blood test was 8 pages long. My ANA was through the roof! I am grateful to finally know and understand why I"ve been feeling this way for the last 35 years. I also tested positive (with 2 tests) for Sjogren"s disease. I don"t have the typical aches and pains and joint problems, but my mouth is always dry and I must have juice or water all the time next to me. I take 5mg prednisone daily, Plaquenil 200mg twice a day and 5mg Norvasc daily. I am very new to this disease, since I have only known I have it since one month ago. I get tired very easily and don"t have much energy. I have really good medical insurance for which I am grateful to have at this time.

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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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