Patient Comments: Sjogren's Syndrome - Describe Your Experience

Please describe your experience with sjogren's syndrome.

Comment from: angelaamy, 65-74 Female (Patient) Published: January 03

I had swollen glands and diagnosed as a mild case of mumps as a child, as a teenager and as an adult. I was finally correctly diagnosed with Sjogren's syndrome, I don't know if I ever had mumps as a kid or was exposed. I also have fibromyalgia, arthritis and low thyroid. Nothing is fatal but if it's a 'learn to live with it' disease I probably have it (sarcasm, my stress reliever). I use OTC moisturizing eye drops and drink water all the time. I am on pain medications. I just wish could find a way to reduce the 'chipmunk cheeks', hate having fat face!

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Comment from: love2sing55, 35-44 Female (Patient) Published: October 18

I just got diagnosed with Sjogren's a couple of weeks ago. I was having extreme fatigue, muscle tightness, spasms and shooting nerve pain. I also have notice eyes and mouth more dry. Also TMJ and arthritis issues. I'm on new medications, gabapentin and hydroxychloroquine (generic for plaquenil). This seems to be helping.

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Comment from: sblogg, 45-54 Female (Patient) Published: April 17

I probably had symptoms of Sjogren's for about seven years, but only realized what I had a year ago when I also started to get rheumatoid arthritis. I went through an emotional whirlwind last year, mostly due to pain and disability with the RA. It has definitely affected my personality. I can get very down and have to fight that all the time. It is important to accept it and to take it easy. My life has been very stressful with a demanding job and living in a developing country. I am learning to make my life less stressful but have a long way to go. The most difficult part of the disease is that it has impacted my relationship. Sex is painful, but my husband has been very supportive. I take 15 mg methotrexate every six days, and it helps, but I can still have bad days. Now, though, most are good. I swim every day, my physiotherapist has fixed my shoulder, and I have a great diet free of sugar and alcohol. I try to stay positive. I am getting on top of it.

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Comment from: Marleyteach, 55-64 Female (Patient) Published: March 26

I have had type 1 diabetes for 37 years and was diagnosed with Sjogren's syndrome a year ago. I say diagnosed, because at times, over the last 15 years, I've had some of the symptoms. My ophthalmologist ran blood tests after my symptoms weren't getting better and my corneas were flaking. She gave me clear contacts which do help with the pain from eyelid abrasion. I found a great rheumatologist who listens to me, cares about how I am feeling, and discusses the disease with me. It's important to have really great medical help. I am now taking pilocarpine, Plaquenil, Restasis, and methotrexate. These are helping, but not as perfectly as I'd like. I have good days and bad days, and flare-ups and times of remission. Things that help me are proper sleep, good diet, and trying to avoid stress. I have an extremely stressful job, but I try to have a good attitude, slow down, and smile a lot, which controls my stress. Maybe I've learned from having diabetes that how I feel physically is controlled by my mental well-being. If I remember this disease is not going to control my life, it won't. It may be a speed bump in the path my life takes, but it's not going to control the quality of my life as I travel through it. My life is a gift, and what I make of it is a choice

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Comment from: Karen, 55-64 Female (Patient) Published: March 22

I was diagnosed with Sjogren's syndrome about 18 months ago. I believe I've had it for many years. Evoxac helps, but I still take a large glass of water to bed each night and use eye drops several times daily. My concern now is severe constipation, which I've been dealing with for a long time. I eat 20-40 grams of fiber and drink eight glasses of water daily, but it doesn't seem to help. Does anyone else have this problem? What do you suggest?

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Comment from: Ally, 55-64 Female (Patient) Published: September 02

I was diagnosed with Sjogren's syndrome approximately five years ago, secondary to systemic lupus. After talking to my doctor, I discovered that I probably had it most of my life. I remember when I was about 10 years old, I loved to go ice skating. So many times, I would tell my mother that "my eyes feel cold." My mother just downplayed the problem because it sounded ridiculous. The doctor thinks I had a mild case back then, just waiting for the right trigger. Well, in 1993, I was diagnosed with non-Hodgkin's lymphoma, stage 4. They did not give me a great chance, but I am here! I asked my doctor if the cancer chemotherapy could have triggered the lupus and its "friends.” He said no, but he thinks the lupus triggered the cancer. My eyes hurt a great deal of the time, my tongue is sore, my body has a feeling of dryness all the time, my lips are very dry, and I have "pins-and-needles" feelings all over my body. I am diligent about my dental care and we (the dentist and I) seem to be keeping on top of it. I use Biotene toothpaste and mouthwash. I do not think it helps all that much, but it is worth a little relief. I never thought at this age I would have problems with cavities on the lower jaws. Luckily, my Sjogren's syndrome comes and goes since it is only one on my list of maladies. I hope I can help other people with the same problem.

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Patient Comments

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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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