Patient Comments: Sjogren's Syndrome - Describe Your Experience

Please describe your experience with sjogren's syndrome.

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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Comment from: Kathy, 55-64 Male (Patient) Published: November 14

I was diagnosed with Sjogren's disease over ten years ago. It started with unbearable pain in the right top muscle in my back. The pain was so bad, I could barely breathe. The pain lasted 2 days. To this day, I feel as though the muscle is going to spasm at any time. I have to be careful not to stay in one position for any length of time, as the muscles in my body will be painful. I can't take pain medications because of other medicines I take. I use Restasis for my eyes, having to use eye drops quite often during the day, and at night I have to use ointment when I go to sleep. (Restasis is wonderful.) I chew gum to keep my mouth from drying out, and I use lip balm for my dry lips. Lately I feel more pain, and I don't know why. I was going to a doctor, but he moved, so now I have to find someone new. I hope that someday soon a cure is found for it.

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Comment from: wisegirls3, 55-64 Female (Patient) Published: October 24

I was diagnosed with Sjogren's syndrome when I was 19. I am now 55. I have a great rheumatologist who sees me every eight weeks. I take hydroxychloroquine twice a day, use eye drops a lot, and drink water constantly. I had to have my left parotid gland removed when I was 20. I was diagnosed with a tumor in my sinus cavity in my 42nd year. My doctor had a biopsy done and I was diagnosed with a rare form of cancer called amyloidosis. They took a bone marrow sample and did a total skeletal scan and did not find it anywhere else in my body. The tumor is still there because it envelops the bone beneath my eye. They cleaned out everything in my left sinus cavity to allow for better airflow. Now I am struggling with my legs and feet swelling, keeping my vitamins B12 and D up and my liver counts down. At times I am exhausted but for the most part I live a fairly normal life.

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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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