Patient Comments: Sjogren's Syndrome - Describe Your Experience

Please describe your experience with sjogren's syndrome.

Comment from: Mara, 65-74 Female (Patient) Published: October 07

I am now 75 but in 2008 I had viral pneumonia and was in the hospital for four days. I was active and enjoyed life until then. After returning home I was tired all of the time and had no energy. There were times that I would pass out or get dizzy and light headed when standing for too long. If I tried to do house work or something I would get short of breath and light headed and would have to sit down. My eyes do get dry to where I use Systane in them. My right salivary gland did swell to where I looked like I had the mumps there. My doctor pushed on it to show me that it would secrete, and my left one does not. I do not have dry mouth but am thirsty a lot. I was sent to a rheumatologist because my doctor thought I may have SLE, lupus. The rheumatologist didn't thinks so because I didn't have enough markers. This after all kinds of tests including heart. I have been chronically fatigued since the pneumonia and in April this year (2014) I developed skin lesions on my chest and back that went to my lower back and then my arms and legs, and they all itched. I was then sent to a dermatologist that did a battery of tests and thought I may have had an allergy to one of my newly prescribed medicines so she had me go off that and gave me some ointment to use on my spots and said to use Vaseline all over for my dry skin. After that she had some more blood work done and a biopsy of my skin. She told me after my labs came back that I had Sjogren's syndrome and said that she was going to start me on Plaquenil but to check with my eye doctor first. At least if this is indeed what the problem is I now know why I'm chronically fatigued.

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Comment from: Debsmith, 35-44 Female (Patient) Published: September 03

I was diagnosed with Sjogren's syndrome through blood tests a year ago at age 38. I had slightly irritated dry eyes but my biggest problems were the unfounded fatigue, flu-like feeling and achy joints. I am now on Plaquenil, taking many supplements and following a strict Paleo diet. The diet has made the biggest positive changes for me.

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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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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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