Patient Comments: Sjogren's Syndrome - Symptoms

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

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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Comment from: lexigirl, 55-64 Female (Patient) Published: May 26

I was experiencing a lot of joint pain. My blood work came back showing I had Lupus but I was advised by my gp that this could be a false reading. I went to a Rheumatologist and after undergoing several tests, it was determined that I have Sjogren's Syndrome. In addition to dry eyes and mouth and joint pain I am now seeing a Pulmonologist because I am having trouble breathing whenever I am the least bit active. I have had anxiety attacks because I felt like I couldn't breathe. CT of my lungs shows calcified and uncalcified nodules in the tissue of my lungs. Also, I can't take the medicine prescribed (azathroprine)for Sjogrens. It makes me vomit, even when I take with food.

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Comment from: Carolyn, 65-74 Female (Patient) Published: May 24

I am 72 and suffered with fibromyalgia for 20 years. Now I have Sjogren's syndrome. I experience fatigue, depression, and I need to take Ambien to sleep. Also, I have aches and pain. I have a pain under my right breast, so I quit wearing underwire bras, but that didn't help. My mouth feels as if it is on fire. It burns! My eyes are fine, so far. I have lost 20 pounds, which is a good thing. I am lightheaded though, and I get dizzy. I also get night sweats. I went through the night sweats years ago as well. I golf and try to keep busy.

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Comment from: cc, 35-44 Female (Patient) Published: May 20

I was diagnosed with Sjogren's syndrome about 10 years ago, but I was having the symptoms longer than that. The fatigue is the worst for me and then the joint pain. I find that if I overdo it with activity is when I experience the most joint pain. I was in remission for about five years until I recently changed jobs and have to work about 14 hours a day. These hours have been extremely difficult, and the fatigue is overwhelming. I am going to have to balance my life and the stress level a lot better if I want the symptoms to decrease.

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Comment from: SSMomOfTwo, 25-34 Female (Patient) Published: February 17

I have just turned 30 and have been finally diagnosed with Sjogren's syndrome. I had been thought to have MS, HIV, and a slew of other diseases. My ENT doctor diagnosed me correctly after seven years of testing. It's been a struggle. My symptoms initially were severe joint and muscle pain and tremors after very little physical activity. I have progressively deteriorated, losing 35 pounds in only four months last year. All of my teeth are fake, or close to being pulled. I lost 10 teeth in three months. The fatigue is currently horrific! One of my relatives thought I was a drug addict. That made me cry, and I no longer speak with him. As if living with chronic disease isn't bad enough. Young females with children need a good support system around them, as well as men who have to support a family. This disease takes its toll, but it is manageable with a loving family around to lend a very much needed hand.

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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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