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My Life With Sjogren's Syndrome

Published July 12, 2014

by Rachael O'Halloran

Disclaimer: This article is not to be considered medical advice. It is about my personal experience with Sjogren's Syndrome, my symptoms and medications. What is working for me medically doesn't apply to all patients with this disease. Please consult your medical care provider before taking any advice you read on the internet.

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Sjogren's Syndrome

Sjogren's is pronounced as "SHOW-grins"

Some of you who follow awordlover on HubPages may have read her hub on Sjogren's Syndrome with its unique screening quiz, which I hope you'll check out. It is a useful tool for those who have mysterious symptoms and no diagnosis yet.

In the comments of her hub, I shared that I was diagnosed with Sjogren's Syndrome in 2008 and that I am managed pretty well with medication. Since my search took quite a few years with a lot of bumps along the way, I thought I'd share my experience with you.

My Sjogren's Is Not Your Sjogren's

By the time we are diagnosed with an autoimmune disease, we have picked up all kinds of medical and mental baggage. It often takes years to get a correct diagnosis. At least, it did for me. Some readers may be able to identify with that.

While it is not true for everyone, medical experts say that people who have one autoimmune disease will often contract another before their lives are over. So it is not unusual to have two or more autoimmune diseases cohabiting in your body at the same time.

I have a pretty specific treatment that works for me and it might not work for everyone else. I know it is tempting to compare because I did it too. I had to remind myself that not everyone with Sjogren's has every symptom on the list and that we all experience symptoms at different levels of intensity.

The Good News And The Bad News

If you have someone in your family with Sjogren's, you're at a higher risk of getting it.

If you have a first or second generation family member with an autoimmune disease, you are at a higher risk of getting some kind of autoimmune disease too, but not necessarily the same one as your relative.

The Sjogren's Syndrome Foundation says there are about 4 million Americans who have Sjogren's. It mostly affects women who are 40 or more years of age and are usually menopausal or post-menopausal. This number has not been updated since 2000 (14 years ago) so you can be sure it is much higher than that now. I think the age should also be lowered because I started out younger than 40 with symptoms.

If you already have your diagnosis, there is always more to learn about this insidious disease and how you can go about treating it with over the counter and prescription medications. It is one of those diseases that can change at the drop of a dime, or it can stay the same for years. It all depends on the person, their lifestyle, their medication plan and what else is going on with them medically.

I'll spare you the origins and history of this disease, who it is named for and all of that. You can find that on any other hub or webpage about Sjogren's because they all go into great detail. This article will address the process of getting my diagnosis and how I now treat my Sjogren's.

Researchers are learning more about Sjogren's all the time.

"Sjögren's syndrome is the main culprit behind dry, irritated eyes, mouth, throat, skin and nose. It is a painful condition that takes an average of 6.5 years to diagnose and can be difficult to treat. Georgia Health Sciences University researchers say learning more about how it develops should improve diagnosis and treatment."

--Georgia Health Sciences University November, 2011

Two Types of Sjogren's Syndrome

1. If you have Sjogren's and no other autoimmune disease, then you have what is called Primary Sjogren's Syndrome.

  • Primary Sjogren's is more aggressive and can cause severe dysfunction in the salivary glands, stiffness and swelling, joint pain, rashes, fatigue, dry cough and vaginal dryness.

2. If you do have another autoimmune disease that was diagnosed before or after your Sjogren's, then you have what is called Secondary Sjogren's Syndrome. It doesn't matter which autoimmune disease came first; what matters is the fact that you have more than one.

  • Secondary Sjogren's comes with less severe symptoms of dryness of mouth and eyes but it has to fight with other autoimmune symptoms in the body.
  • When a patient has two or more autoimmune diseases, it is very difficult for a doctor to diagnose Sjogren's because the symptoms are masked to look like so many other diseases, delaying diagnosis confirmation.

The presence of other medical conditions determines how well a patient gets along with Sjogren's and with their treatment plan.

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You don't have to have every symptom on the chart

http://ocw.tufts.edu/Content/37/topics/487871/487940

http://ocw.tufts.edu/Content/37/topics/487871/487940

Symptoms

My General Health

Except for the 1990s when I was in the best of health due to being misdiagnosed a couple of times, I have always been pretty healthy. I've tried to take good care of myself, eat right, get plenty of exercise, and I've always drank lots of water.

Since 2009, most of the time I don't even think about having Sjogren's Syndrome. I don't give it a second thought, except for the couple of minutes I spend taking my medication or using eye drops each time. As soon as I'm done, it is out of my mind. I consider myself lucky that my symptoms are well taken care of with prescription and over the counter medication, exercise, diet, common sense and lots of rest.

I do wish I had been diagnosed sooner though, because it was a very rough road to get to diagnosis and treatment.

Looking back in hindsight, my symptoms were almost right out of the textbook, yet it took years to finally label my disease as Sjogren's. I was given several other diagnoses - Multiple Sclerosis, Lupus, Fibromyalgia - before I was definitely diagnosed with Primary Sjogren's Syndrome.

It was a wonder the doctors didn't kill me with all the medications they gave me for diseases I didn't have.

Autoimmune Diseases