Patient Comments: Sjogren's Syndrome - Describe Your Experience

Please describe your experience with sjogren's syndrome.

Comment from: Sandie, 45-54 Female (Patient) Published: May 09

I was just diagnosed with Sjogren's officially today. All this joint pain and chronic fatigue for years, I felt like dying, didn"t care. Rheumatologist dismissed me as fibromyalgia only. Well, maybe if he at least took blood work the first time! I mean I've only been in pain for... twenty years! Recently I started getting the dry eyes, dry mouth, depression, passing out from pure exhaustion, but guess what? I now have a name for what I have and I am happy and relieved because I am going to fight for my long, bright future with my wonderful husband! I take Zoloft, Klonopin as needed, and Daypro Alta, no narcotics, no prednisone! I also use some oral and vaginal lubricants.

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Comment from: Carmen R, 45-54 Female (Patient) Published: May 07

I was diagnosed with Sjogren's syndrome in April of 2010 when one morning I woke up with my hands swollen and in a lot of pain. My rheumatologist immediately put me on medications but for some reason I always continually have inflammation and pain in different parts of my joints. I also continue to get many infections that are hard to treat. Four years later I still wake up with inflammation either in my hands or my feet and still constantly suffer from pain all over my joints.

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Comment from: Gayle, 55-64 Female (Patient) Published: March 27

I feel so bad for everyone suffering from Sjogren's as I too have suffered for 11 years. Every day is such a struggle and you can never plan things because you don"t know if you will have a good or bad day. I have the related autoimmune problem that goes with it, of Hashimoto's thyroid and vasculitis on the legs. Just want to let you know of two things that helped ease a lot of pain. First I had all of my tear ducts cauterized. That keeps the tears you do make stay in your eyes longer. Then about 8 months ago my eye doctor helped my badly scratched eyes that hurt terribly with every blink. I now wear a no prescription contact along with my glasses. It protects my eye like a Band-Aid and doesn"t hurt as badly. I hope this helps someone else too.

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Comment from: LynnJ, 65-74 Female (Patient) Published: March 26

In February 2008 I was diagnosed by my first doctor with Lupus/rheumatoid arthritis. After this doctor had me on prednisone for 9 months I changed doctors. He took me off prednisone and took all the necessary blood test and made the diagnosis of a very mild form of lupus. I did not have another flare up until January 2013. I went to another doctor and he diagnosed me with Sjogren"s syndrome and he did not prescribe medication but explained to me how to manage it. I feel better knowing that I can manage this disease without prescription drugs. I am aware that the disease could worsen as I get older but I exercise regularly, eat healthy and get plenty of sleep, I also use Biotene for dry mouth daily. But most importantly I"m not going to the doctor every month.

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Comment from: FelicityA, 65-74 Female (Patient) Published: February 04

I've been treated for allergies by many doctors for several years with little or no lasting results. But, it was my frustration and curiosity to get to the root of my problems that led me to literature about Sjogren's syndrome. I've suffered for over 30 years with this disease, which has made my life a living hell. Not only has it disrupted my life socially because of dry ashy skin to my legs and hands, dry mouth has made it impossible to sleep at nights and I have the constant awareness of bad breath. Also, I have intense pain in my lower back and dry gritty eyes that sometimes are red and itchy during allergy season. Even though the disease is not 100% cured, I can better manage my condition with the knowledge I have been give and hope that someday, someone can find a cure for this dreadful disease.

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Comment from: FlaGurl, 45-54 Female (Patient) Published: June 04

I was recently diagnosed with Sjogren"s syndrome and my feet are very itchy and peeling like crazy. I am also sun sensitive which has only gotten worse since I"m on generic Plaquenil, if I get too much sun I"ll be sick for 2-3 days as if I have a really bad burn although I really am not burnt, just blotchy.

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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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