Patient Comments: Sjögren's Syndrome - Describe Your Experience

Please describe your experience with Sjögren's syndrome.

Comment from: Charlie, 35-44 Female (Patient) Published: August 20

I was diagnosed with Sjogren's 13 years ago after having strange symptoms. I had swollen eye lids, joint pain in one wrist and a rash on my back. At first just managed dry eyes. a

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Comment from: Pinky, 55-64 (Patient) Published: August 08

I too was diagnosed with Sjögren's after 25 years being told that I had fibromyalgia, which I do not have. So many Doctors so many medical bills and so much pain. I was wondering if anybody has ear tube problems with Sjögren's. I had my ear drained and now 30 days later the pressure came back I do not have any ear pain cold sinus infection or anything that could cause this problem. I was wondering if Sjögren's has anything to do with this I do have a dry nose but not bad slightly dry. My Doctor tells me that my Sjögren's got nothing to do with my ear problem but I read articles that Sjögren's can affect your ear/ears. The ENT Doctor wants to put a tube in my ear. I need to find an ENT Doctor that is familiar with Sjögren's.

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Comment from: Kaye J Qld Aust, 55-64 Female (Patient) Published: June 13

I asked my Specalist if a good naturopath could help me and his response was yes try it they are usually good with this type of thing. I had to tell him everything the specialist had me on. He then treated me and while I am on his tablets which to my understanding are fine minerals I am pretty much pain free. And listening to my body is the most helpful thing rest when your body tells you too. I have a high stress job which I have noticed most of the people on this site seem to have mentioned too. The naturopath has me on Duo Celloids one is PCIP (Potassium Chloride 65mg,Iron Phosphate 15mg and Sodium Phosphate-dibasic anhydrous 260mg, and Sodium sulfate-anhydrous 195mg) Two different tablets take one of each three times a day with meals . I am also on Phlaquinil twice daily . Took myself off Prednisone before the specialist told me too. Felt it wasn't doing anything anymore besides making me put on weight. Also 1 Krill oil in the morn 1000mg and 2000mg Fish Oil in the afternoon. Was better on 6000mg of fish oil but my stomach couldn't handle it, While I was on 6000mg I had no joint pain. Hope this helps someone else.

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Comment from: bcingu1955@att.net, 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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Sjögren's Syndrome - Symptoms and Signs Question: What symptoms and signs did you 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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