Patient Comments: Sjögren's Syndrome - Describe Your Experience

Please describe your experience with Sjögren's syndrome.

Comment from: xaviersio, 65-74 Male (Patient) Published: May 17

After getting no help for my Sjogren's syndrome from conventional medicine, I looked into alternatives. I have experienced near miraculous improvement in saliva production by taking a parotid supplement. Both Standard Process Parotid PMG and Biotics Research Cytozyme Parotid-TS have worked equally well for me. Hope this helps.

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Comment from: wpatticake, 75 or over Female (Patient) Published: April 28

In 1999 after taking care of my husband that had Alzheimer's for a year I was diagnosed with Sjogren's. The rheumatologist said I had the highest levels she ever saw. After crying and leaving there I was determined to find a new doctor, which I did. He said I have seen higher levels and proceeded to treat me. Since then my husband passed away and I have remarried. After two years of marriage my present husband has been diagnosed with Alzheimer's too! Stressful. Myself, I have dry eyes and mouth, skin lack of saliva, tiredness and extra cavities, pain in joints, etc. I also have some depression as I know what I have already been through. I only take Tylenol now and then. I use cream, spray stuff in my mouth that helps with saliva, and keep a glass of water near me when I eat. If I do not I can choke. I also chew well. I am active and keep busy. It is not easy but I just make it work.

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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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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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