Patient Comments: Sjogren's Syndrome - Prognosis

What is the prognosis for your Sjogren's syndrome?

Comment from: mumof2, 25-34 Female (Patient) Published: May 01

I am 25 years old and I have just finally been diagnosed with Sjogren's after five years of hell with chronic fatigue being the worst of the symptoms. I also have many other symptoms, like an extremely dry and itchy vagina that tears even when just wiping after going to the toilet, recurrent esophagitis and pangastritis, hip pain, itchy eyes, dry lips that bleed all the time, bowel problems, rash on face, chest and knees whenever I go in the sun – just to name a few. But I'm glad to know I'm not the only one. My advice is when you know something is not right with yourself but the doctors keep just brushing you off, keep at them, because you know your body better than anyone.

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Comment from: byjoan, 75 or over Female (Patient) Published: March 01

I was diagnosed with Sjögren's two years ago. I hate it and how it has changed my life. I was healthy, active, sports loving, happy person. Since then It took my six months to get my tears flowing again, I lost nine teeth and painfully had them replaced, and worst of all, both of my feet are numb for good. I was an avid skier, now my loss of balance has curtailed the one thing I love, and I feel depression overtaking me. I'm about to start physical therapy but wonder if the fatigue factor will allow me to make progress.

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Comment from: tootsie1, 45-54 Female (Patient) Published: December 11

After years of running to tons of doctors I was diagnosed with Sjogren's syndrome. I have had teeth pulled due to pallet inflammation. I was told that I had a virus in my mouth and was handed psychiatric cards by my doctor. I suffer from fatigue, sore joints, swelling hands, nauseousness, headaches, itchy skin, vertigo, dry mouth, problems swallowing, small red bumps on my skin, no sexual appetite, weight gain and dry nasal passages. I also experience rib pain, sore salivary glands and have Hashimoto disease. I can not tolerate taking the full dose of Hydroxychloriquine. I find that I have no quality of life. I had been in remission but now have had a big flare up for over a year.

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Comment from: Ellen, Female (Patient) Published: October 29

A family member was told by a doctor that Sjögren's Syndrome is only found in people of Swedish decent. Is this true? I'm curious because I have had Hoshimoto's Thyroiditis for years, and my sister has suffered with a dry-eye condition for which she has been diagnosed with Sjögren's. Also we have other thyroid issues as well as Klinefelter's Syndrome in the family. We're not aware of any Swedish ancestry.

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Comment from: disney950, 55-64 Female (Patient) Published: April 23

I am 61 and was diagnosed with Sjgrens approximately 5 years ago, although I've had many of the symptoms for over 10 years (severely dry mouth and eyes, pain in my right hip which makes it impossible to walk more than 10 minutes, cold hands and feet, so cold that it's often difficult to move them, and occasional lung pain. My mouth is so dry that I have to take a sip of water with each bite of food so I can swallow it. I also experience pain in the lymph nodes under my left arm and I seldom have energy. Fortunately I have a loving husband who encouraged me to retire early although two years of being retired hasn't helped much. I pray for guidance daily but haven't found it yet.

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Comment from: newbie, 35-44 Female (Patient) Published: March 07

I was diagnosed a week ago today with Sjogren's syndrome. I have so much joint pain especially from my hips down. I am beyond exhausted/fatigued, I've lost a lot of my hair, and these crying episodes just need to stop. I've started on a mixture of medications to see what will help, I go back this morning to my doctor! Good luck to everyone! We can learn together!

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Comment from: vick, 45-54 Female (Patient) Published: February 22

Well I'm not sure when my Sjogren's syndrome actually started. The pain that sent me to see a doctor was in my elbow. Then it went to my knees and feet and fingers. I have also had dental issues -- when swallowing, the left side of throat hurts constantly. I'm now having problems with chewing some foods. But the worst is my finger tips and toes. They are purple most of the time and they hurt so bad and turn black. You can actually see the dead tissue under my nails. Some days I feel like they are just going to pop open they hurt so badly. Makes it hard to walk or even do my everyday things. My fingers hurt just to touch anything. And sleep, what's that's? I sleep maybe three to four hours at a time. I couldn't tell you what it would be like to sleep all night.

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