Patient Comments: Sjögren's Syndrome - Describe Your Experience

Please describe your experience with Sjögren's syndrome.

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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Comment from: Delayne, 75 or over Female (Patient) Published: August 21

I have had Sjogren's syndrome for 21 years and have suffered the minor and major aspects including cancer in my right parotid followed with radiation, but I got cancer again. The left-side parotid was removed in 1981. It is a very difficult disease to handle. I used to belong to a support group in Phoenix that was helpful. However, I've moved to North Dakota and haven't been able to find one I like.

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Comment from: 55-64 Female (Patient) Published: August 15

I can't believe I have it. I'm so fatigued I have trouble concentrating. I get very dizzy. I am so over heated at 70F that the sweat runs from me. I never used to sweat. I have trouble sleeping because I ache all over and because I'm so hot. The bed feels like it is on fire where I have been laying. My jaw hurts on the left side. It is hard to bring my back teeth together. One leg aches continually. I ache from head to toe. My mouth isn't really dry and my eyes aren't dry. It seems my throat is however. I get so desperate for a drink of water sometimes, I'm almost frantic. I get a prickly feeling in my chest and have to guzzle water or some juice. Please tell me if the doctor is on the right track.

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Published: July 28

I was diagnosed with Sjogren's syndrome about 13 years ago through having an eye test. At that time my main symptoms were dry eyes and mouth which, although causing major discomfort and loss of confidence were 'manageable'. I did not use medication instead I opted for good dental care, chewing gum, plenty of water and a hot flannel held over my eyes to 'ease' the dryness. I find bright sunlight a huge problem. I would just like to alert others to other symptoms which can follow from this diagnosis. 5 years ago I had a 'lump' in the roof of my mouth - it was Non-Hodgkins Lymphoma which was treat (very successfully) with radiotherapy (not comfortable but effective). I have just been diagnosed with Vasculitis which is currently being treated with steroids. Let's hope they do the trick. It is a debilitating disease which is difficult to talk about but tell your friends and family exactly how it makes you feel and they will understand that sometimes you simply can't speak to them and won't want to show them your eyes. Dark glassed are a lifesaver!

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