Patient Comments: Sjögren's Syndrome - Symptoms and Signs

What symptoms and signs did you experience with Sjögren's syndrome?

Comment from: Mocha, 55-64 Female (Patient) Published: January 03

With Sjogren's syndrome my eyes have terrible problems. My corneas are trying to detach, which has left me with permanent vision loss. The pain and irritation is awful. My teeth are a mess. I've had so many root canals and crowns I've lost count, and now I'm going to lose one of my teeth. I suffer from fibromyalgia and osteoarthritis. My skin is extremely sensitive and prone to terrible bouts of itching. I live with irritable bowel syndrome and esophageal spasming. I'm frequently tired.

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Comment from: blu, 55-64 Female (Patient) Published: December 09

I was diagnosed with it over 15 year ago. I get all the aches and pains associated with it. The left side of my body is more painful than my right side. I have to take a hot shower each morning just to be able to move. Recently, I started getting pain on my left shoulder. I take public transportation to work. at the end of a work day I would literally stop from walking home just to rest my body, my muscles would feel really heavy and feels like pulling me down. I also get the dryness in my throat and eyes. My ophthalmologist prescribed Restasis eye drops to help the redness and dryness. I would also experience bad taste and smell in my mouth, and people just walk away when I'm around. I have been trying many things just to have cleaning smelling breath as my job is interviewing people. I am also taking pilocarpine for dry mouth. I am desperate.

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Comment from: Mick, 45-54 Female (Patient) Published: November 20

I have been suffering with total body ache, migraines, dry mouth, dry eyes, and sinus problems for over two years. This past summer was real bad when my acid reflux and fatigue hit me. They tested me for RA (rheumatoid arthritis) and it came back clear but Sjogren's showed up. I just started treatment so I am still not feeling good. I am happy to have an answer and that I am not crazy. My family and coworkers just don't get how I have all these symptoms going on. I hope they never have to deal with something like this.

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Comment from: kaycee, 45-54 Female (Patient) Published: October 15

I have been diagnosed with Sjogren's syndrome about 5 years back, after spending my every off day at the dentist. I went back to the dentist after 6 months for check up and I had 18 cavities! I mostly suffer with extreme dry mouth, I drink so much water that I have to run to the bathroom 2 to 3 times a night. I also have joint pain and it is being controlled by meloxicam 15 mg daily. I had to have my teeth extracted, I try to get them filled but as fast as they are filled the decay has been returning so fast.

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Comment from: STEVIET, 55-64 Male (Patient) Published: May 11

I am a 58 years old male. I have been sick for 7 months with a weight loss of 65 lb. The taste of food sickens me so I do not have the desire to eat, but I do not vomit. I am fatigued and sleep all the time. I have abdominal pain, irritable bowel syndrome, and diarrhea. I have thrush, and diagnosed with dry eyes and mouth. I have pain throughout my body. I am so depressed, I don't want to live like this and no one can seem to find what is wrong. I have had a million dollar work up including a PET scan. I felt sure I had Sjogren's syndrome, until my ANA blood work RA (rheumatoid arthritis) tests, all negative, homogeneous 1:40, negative. I don't know what to do. I do not want to live like this. It is tearing me apart and my wife, and killing our marriage.

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Comment from: Denise, 55-64 Female (Patient) Published: March 14

I have Sjogren"s syndrome. I have dry lips and I need something that helps my lips stay moist. I get sores like fever blisters but they go away if I can keep my lips from cracking. I try to keep lipstick on or Vaseline lip therapy. I can"t open my mouth very far without feeling like the corners are going to split wide open.

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Comment from: Linda D, 65-74 Female (Patient) Published: March 14

I have Sjogren's syndrome. I have also had non-Hodgkin's lymphoma (8 years clean). The dry mouth has been helped by drinking water with electrolytes. I drink about 6 liters a day, it also helps vertigo. I am on 4 eye drops due to myasthenia gravis. I feel fortunate because I could have more severe problems.

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Sjögren's Syndrome - Describe Your Experience Question: Please describe your 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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