Patient Comments: Sjogren's Syndrome - Describe Your Experience

Please describe your experience with sjogren's syndrome.

Comment from:, 55-64 Female (Patient) Published: June 07

I have been tested for this. The blood test came back with SSA/RoAb at 2 and SSB/La AB is 3. I am not sure what the numbers should be, I have Epstein-barre, neuropathy, Raynaud's, dry mouth, and eyes.

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Comment from: DG, 55-64 Female (Patient) Published: May 13

I had seven knees surgeries, which included bilateral knee replacements. The surgeon couldn't figure out why I had debilitating pain and swelling of tendons, etc. around knees. Finally, I was diagnosed with Sjogren's.

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Comment from: perfecta, 55-64 Female (Patient) Published: May 02

I'm wondering if dry hair is caused by Sjogren's. I have used every possible product to no avail. I went to a dermatologist and had a biopsy of my hair. The doctor said that it was not internal, but environmental. I have changed hair products and stopped highlighting my hair for a year now and there are still no changes. My hair is so dry it breaks off at the ends. The roots are healthy. We keep cutting the ends and they continue to grow brittle and dry.

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Comment from: Rae, 45-54 Female (Patient) Published: May 02

It all started about five years ago with fatigue and painful joints. I was diagnosed with RA ANA and was positive for fibromyalgia. I was put on Neurontin, Mobic and prednisone. The prednisone gave me a cataract and I needed surgery for that. They put me on methotrexate and I am now testing negative for RA. I am also on Plaquenil for autoimmune Disease, (Sjogren's syndrome). I battle with thrush and urinary infections (bacterial), and use ciprofloxacin, which is an antibiotic that I find can cause many problems like joint/muscle/tendon pain and fatigue – just what I need. I also battle with depression. Everyone just needs to have a good support system.

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Comment from: karen, 45-54 Female (Patient) Published: April 16

I have been healthy and active all my life. At age 40, I started having panic attacks and obsessive thoughts of worry. I always thought it was physical a problem with my brain. After 10 years of doctors and mental health doctors, blood tests came back positive and negative for Sjogren's. Retesting still showed the same result for. I am 54 years old now and crippled. I'd like to know if anyone else has had problems with whole-body vibration.

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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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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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