Patient Comments: Sjogren's Syndrome - Describe Your Experience

Please describe your experience with sjogren's syndrome.

Comment from: Karin, 35-44 Female (Patient) Published: September 28

I was just diagnosed with primary Sjogren's syndrome in April/May after stumbling on an article and realizing I had multiple symptoms that I could definitively trace back at least 3 years. These include dry mouth (with numerous dental issues), dry eyes, GERD, petechia on lower legs, fatigue and muscle/joint pain and periods of neuropathy. However, I have a history of carpal/cubital tunnel syndromes so it's difficult to say if the arm pain and neuropathy are related to Sjogren's or carpal/cubital issues.

Was this comment helpful?Yes
Comment from: Linda, 55-64 Female (Patient) Published: September 21

I have had Sjogren's syndrome since I was a child but did not get diagnosed until I was 30 years old. I had a lip biopsy and other testing done and was diagnosed. I have had to have first all my teeth capped and when they all fell apart I had to turn around and have all implants. The cost was phenomenal. For my dry eyes I take bilberry leaf daily. This has helped immensely. Also I suck on xylitol candies which actually reduce cavities in people with their teeth. This has been a total life saver. I am now able to go into a store without a water bottle by having the xylitol pills handy. National Nutrition sells them by jars of 240 for around USD 11. They are worth it. At present I have had a terrible episode of ultra-severe pain in my hip and thighs. I could not even walk more than a few steps without being in agony. I have had to go on high dose of prednisone and Plaquenil as well as naproxen. Up until now I have been able to manage but it suddenly one day just became debilitating. I do take many supplements such as krill oil and a host of other things that help joint function and so forth. The prednisone is keeping me from sleeping at night but in order to walk I have to take it. It took about 12 days for it to work. Percocet did not help for the pain it was just that bad. Please make sure to take bilberry for the eyes, krill for the joints and magnesium malate as well which is so important. Also I take 4000 IUs of vitamin D and vitamin K2 to help utilize it. I eat a very healthy diet and have very little if any sugar in it. I hope some of these ideas help someone.

Was this comment helpful?Yes
Comment from: Cynthia, 55-64 Female (Patient) Published: June 30

I am 62 years old. For years I had bouts with fatigue. My hair began to fall out and I mentioned this to my primary doctor. She requested blood work and Sjogren's syndrome showed up. A visit to the rheumatologist confirmed Sjogren's and rheumatoid arthritis. The rheumatologist referred me to an ophthalmologist and plugs were immediately placed in my eyes to help the dryness. I have tingling in my hands and feet. Oh, I have had injections in my head to stimulate hair growth. I have spent over USD 1500 for cavities and am no way finished yet. My lips used to be so dry and crusty; I thought it was stressed related. I still have a nagging cough. I wake up with tingling in my hands and feet but after walking 5 miles it helps. I survived breast cancer, I consider this another journey to go through.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

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?

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.

Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.