Patient Comments: Sjögren's Syndrome - Describe Your Experience

Please describe your experience with Sjögren's syndrome.

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: Josie, 45-54 Female (Patient) Published: January 27

I just had a blood test taken to detect if I have Sjogren's syndrome. Since last year May I am struggling with my eyesight. The bright-white light disturbs my eyes. I've seen 4 different ophthalmologists, 2 optometrists, without good results. My mouth is very dry, I drink a lot of water/tea. My eyesight is what I am concerned about. I want to explore all the possibilities to have this fixed, somehow. There was no one in my family with this disease.

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Comment from: GarMar, 45-54 Female (Patient) Published: January 14

I was diagnosed with Sjogren's syndrome about 1 month ago. I had a lot of symptoms, but just ignored them because I tried to treat myself. I thought I had diabetes because I was thirsty and my mouth dry all of the time. I used to cycle and gym a lot for exercise, now I am just to tired and get short of breath so quickly. Sometimes I cannot swallow my food down and start gagging as the food gets stuck in my esophagus - it is very painful. My lips are dry and the corner of my mouth cracks and bleeds. I cannot eat certain vinegary or acidic foods, even gum or toothpaste are too strong and burn my tongue. I had bad teeth and my dentist kept on saying I should brush more even though I am very meticulous with my water flosser, normal floss and electric toothbrush - I told him now I was diagnosed (he is still not convinced Sjogren's do have an effect). I teach students and often my throat gets very scratchy and I am so hoarse, the students battle to hear me. I also battle with low grade fever and hot flushes all of the time. I often get sinusitis, and have had tracheitis, sinusitis, bronchitis and conjunctivitis for 11 days now (still on antibiotics). I've been placed on plasmoquine 1 month ago, cannot feel any difference yet. I guess the fatigue is the worst as I used to be so energetic and alive. I wonder what will help with this, if I should just drink lots of multivitamins.

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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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