Patient Comments: Sjogren's Syndrome - Describe Your Experience

Please describe your experience with sjogren's syndrome.

Comment from: Tamara, 45-54 Female (Patient) Published: May 28

I have been diagnosed with UCTD (undifferentiated connective tissue disease)/lupus/Sjogren's syndrome. Just recently I was told it is Sjogren's. I have so many things going on but I will say I use products for dry mouth, spray and Xylitol for nasal, Restasis and other medicines. It is very overwhelming. I hope that we all get more knowledge and relief for what we are going through.

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Comment from: LISA, 45-54 Female (Patient) Published: March 05

I have been living with Sjogren's syndrome far longer than when I was medically diagnosed approximately 5 or 6 years ago. My worst symptoms are fatigue, dry mouth and eyes, cold hands and feet, joint pain and swelling in my lower legs. I'm determined not to allow this disease to control my life; I still work 40 hours a week and attend college on a part time basis, pursuing my AS (Associate of Science) degree. Exercising gives me more energy, as weird as that may sound. I find that if I don't exercise, I ache more. Luckily, my job has an employee lounge which allows me to take naps during my breaks. Lately, I started experiencing slight cheek pain, this tells me I need more rest, so I slow my schedule down and try to get as much rest as possible, again, not giving in to this disease. Sleep can sometimes be a problem, if I wake up one night, my body will follow suit the next night, unless I take something to help me sleep throughout the night; ZzzQuil works wonders! I take hydroxychloroquine twice daily; other than that, Alive women's energy multi vitamins, vitamin D3 and fish oil 1200 mg. Stress is definitely a trigger factor for me in addition to too many sweets, white breads, white rice and fried foods. I've learned to drink my coffee mildly hot, drinking it hot severely dries my tongue out for a day or two. Sometimes, mind over matter helps. Hopefully a cure will be found some day.

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Comment from: Schavonne, 45-54 Female (Patient) Published: February 25

When I was first diagnosed with Sjogren's syndrome I was 40 years old but I'm sure that I had it for over 10 years because I was diagnosed as rheumatoid back then. I had terrible joint pain, dry eyes, dental problems, GERD, hair loss and skin and nail problems. I've had the salivary glands swelling and they still feel achy in cold weather. I use saline nasal spray for dry nose. I've taken so much medicine for this and for that, Plaquenil being one. I don't know if they at all helped, I still felt awful. Spiritual help is good for healing, my mind is in a better place. I use eye drops a lot and I use probiotics and a lot of my skin problems cleared up. I changed my diet, I now eat foods that don't hurt my stomach and that helps my joints. I didn't realize what I could be eating could cause joint pain. Sad about my eyes but I'm not giving up. I found that it's important to balance the bacteria in my body, it helps to feel better.

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Comment from: Kathy, 45-54 Female (Patient) Published: February 19

I have Sjogren's syndrome, bipolar disorder, thyroid disorder, IBS (irritable bowel syndrome), hearing impairment, and sciatic problems. I suffer with severe dry eyes, dry nose, dry mouth, headaches, dental problems, continuous mouth infections, bowel problems, fatigue and joint pain. I am still waiting to see a specialist.

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Comment from: Berta, Female (Patient) Published: February 17

I was diagnosed with Sjogren's syndrome 5 years ago. I have dry mouth and dry eye, and use Refresh Plus. I would like to know if anyone has experienced internal numbness, I was sick last year and had numbness for 4 months, like the dentist shot Novocain, through my whole body. And the doctors couldn't/can't figure it out, and I'm experiencing it again right now as I type this, and I just had the flu. Last year I had pneumonia, and after taking the medicines, the numbness set in, and I couldn't eat or drink for 4 months, the numbness came and went. This is scary.

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Comment from: JP, 65-74 Female (Patient) Published: February 09

I was diagnosed with Sjogren's syndrome about 2 weeks ago, even though my rheumatologist told me I've had it for 4 years. I don't remember him telling me at all! I've got the dry mouth and eyes but at least no corneal ulcers. What I'm scared of now is the swelling of my legs, ankles and forearms. I read that there is a rare condition related to Sjogren's that can cause cirrhosis of the liver. I am so terrified my heart beats rapidly all the time. I am going through some really stressful things right now. Maybe that had an effect. I hope for all of us to at least be able to lead some kind of life. I know I should stay positive but right now it's very hard to do.

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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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