Patient Comments: Sjogren's Syndrome - Symptoms

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

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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Comment from: Worried in Florida, 45-54 Female (Patient) Published: February 18

I am 46 and I just been diagnosed with Sjogren's last week. I am scared and worried not because of me, but for my family, and my 7 year old daughter. I have been reading everybody's post and I hope that everyone will soon feel better. I have the dry mouse, fast heart beat sometimes, very dry skin, blue finger nails, I sleep 4 hours a night, I'm always stressed, and I am having a hard time exercising. The rest of my results will be read to me next week.

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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: sore m, 55-64 Female (Patient) Published: October 08

I have dry scalp, dry eyes, dry mouth, dry ears, everything is dry. I was diagnosed about a year ago with rheumatoid arthritis, and secondary Sjogren's. I take Arava and Humira for the rheumatoid arthritis. I use eye drops, Biotene mouthwash (which really helps with dry mouth), moisturizing shampoo and Eucerin for dry skin. I have learned to control the symptoms and that there is no cure.

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Comment from: grimli76, 35-44 Female (Patient) Published: April 15

I was diagnosed about four years ago with a false positive for Lyme disease and a high sedimentation rate (sed) – higher than that of an 80 year old. I often get to feeling rundown and dried out or dehydrated and have to go to the clinic for an IV therapy session, where I get fluids pumped into my veins – then start to feel a little better. I have a severely dry mouth and eyes, my eyes get infected a lot these days and get pus in them and crusty and red. My tongue gets dry like beef jerky and now I've had dry throat, where I lose my voice and sound really raspy. My skin is dry and rough – lotions don't seem to help much. My lips are usually cracked and sometimes split from being so dry. I have been experiencing increased pain in my knees due to the joints being dry and the rubbing of bone on bone. I have a deep pain in my neck, shoulders, and both arms. My hands feel weak and inflamed. I had a nerve test done and found out I have neuropathy in both my arms and legs due to Sjogren's. I don't even like to go anywhere or leave my home. I haven't left all winter except to see doctors, because the cold is so crippling on my body. There are times during flare-ups that the pain is so intense I can't sleep and pain medications do not help at all. Sometimes the only way I can get any relief or rest is to continuously use my heating pad. I am way too young to feel this old. There is so much I would still like to do in my life but fear that I may never get the chance to do it. I fear one day getting news of cancer because of this disease. My lymph nodes are always sore and it really has me wondering. I can so relate to everyone who shares their stories. Sjogren's is the gateway to diseases that are much worse. I wish more people understood what we go through as Sjogren's sufferers. Maybe then there would be more help out there for us.

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