Sjogren's Syndrome


What were the symptoms of your Sjögren's syndrome? Submit Your Comment

Comment from: Pctech51, 65-74 Female (Patient) Published: September 05

I have had Sjogren’s syndrome since I was 7. My first real trouble started in my 20s with extremely dry eyes and mouth. I played in a band, I would be singing, and my throat would dry up and cause me to not be able to continue singing. Now my joints hurt all the time and the fatigue is terrible! My tongue was so dry I had 1/4 inch splits in my tongue. I am taking pilocarpine to create moisture in my mouth. Now my tongue looks and feels 100 percent better! The cracks are disappearing.

Comment from: Amonty001 , 55-64 Female (Patient) Published: July 05

My symptoms of Sjogren's syndrome were extreme fatigue, dry eyes and mouth, shortness of breath, and tumor on lung; fifty percent diffusion rate on spirometry test. I have lymph node issue, and large granular lymphocytic leukemia of the NK variety. I have nausea, trouble swallowing, raspy voice, and pain! I also have kidney disease, degenerative disc disease, balance issues and cataracts. Did I mention fatigue! I am sleeping all the time. I am anemic and have low white cell count (other than the clonal cancer cells). I am 58. I have chronic Lyme disease; had EBV (Epstein-Barr virus).

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

My first symptom of Sjogren’s syndrome was 24/7 burning/freezing and buzzing sensations in my lower legs. This was quickly diagnosed as peripheral neuropathy (2007). Next came a plethora of other symptoms like balance problems, muscle twitches (fasciculations), difficulty swallowing, nausea and a cough. I had terrible joint pains which would flit around between knees, ankles, fingers, wrist, and so on. Sometimes these joint pains would last for three minutes or three hours or three days, then they would go as quickly as they came. My eyelids felt heavy but not gritty nor what is typically described as dry. I had a burning tongue but not a dry mouth at that stage. My autonomic nervous system had taken a big hit and along with the symptoms described above, I developed severe gastroparesis (2008). Simultaneously I was also diagnosed with bronchiectasis of the lungs (2008). Eventually my mouth became drier but it was definitely not my worst symptom. My eyes were declared to be very dry by an ophthalmologist in 2012, even though I didn't realize it. Just a few months ago (2017) I had my first corneal erosion which was exquisitely painful. Unlike many, my Sjogren's syndrome started with a number of extraglandular symptoms, then the dry eyes and mouth gradually caught up, although I would have to say thankfully they have not been my most troubling symptoms. My neurological symptoms have been my worst.

Comment from: win, 55-64 Female (Patient) Published: July 29

With Sjogren’s syndrome I have no saliva, I take artificial saliva. I use Refresh eye drops for my eyes. My skin is so dry and thin it bruises. I have GERD, gained much weight and high blood pressure. I have lost all my teeth and cannot tolerate dentures, I think that’s it.

Comment from: Undiagnosed , 55-64 Female (Patient) Published: April 14

I have neurological symptoms like one of the patients here and wanted to know what treatment she received. I haven’t been diagnosed with but I think I have Sjogren’s syndrome. Thank you.


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