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Living With Sjogren’s Syndrome

Posted by Connie on Wednesday, April 22nd, 2009 at 10:56 pm and is filed under Advocacy, Autoimmune Disease, Chronic Illness.
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The lacrimal apparatus. Right side.
Image via Wikipedia

Since April is Sjogren’s Syndrome Awareness Month, I thought I’d write a little about what it’s like to live with this disease.

  • My Diagnosis: I began complaining of dry eyes and a very dry mouth to my Rheumatologist shortly after being diagnosed with Fibromyalgia. I was having other health problems at the time but although my blood work showed a high ANA, nothing could be determined. I also was already diagnosed with Myasthenia Gravis, Ulcerative Colitis and Anemia at that time. When he say my tongue he was shocked.  He recommended that I visit an ENT to get a diagnosis and an Opthamologist. The ENT refused to do a lip biopsy because he was concerned about my healing. The Opthamologist saw how  dry my eyes were. We tried OTC artificial tears first. When they did nothing to relieve the dryness, he inserted tear duct plugs. Within 2 months both doctors decided to diagnos me with Sjogren’s without the blood work because I had the hallmark symptoms of this disease.
  • My Treatment: I am now using Restastis, have two tear duct plugs in each eye (this varies as my dry eyes can get better at times), use OTC artificial tears, gel at night and take prescription form of Folic Acid. I can’t eat spicy foods at all and drink a lot of water every day. I see the dental hygienist 3 times per year and the dentist twice. I go to a dermatologist 3 times a year partly because of my severely dry skin. I wear sunglasses when ever I am outdoors (even if it is cloudy). And I see my Rheumatologist every 2 weeks for B12 shots. (please note that this is also due to my other diagnoses)
  • How I Feel: Sometimes my eyes hurt because they are so dry that they feel like I have sand in them. I am frequently tired. My mouth is always dry, along with my lips. I have bad gums and cavaties even though I brush my teeth 3 times per day. My skin is dry and flaky and I sunburn easily.  I have other symptoms but because I have other diseases it is hard to distinguish what causes what.
  • What I Do To Help Myself: I laugh a lot, especially about myself. I try to think positively and surround myself with positive people. I do things that I enjoy. I sleep when I need to and try not to overwork. I keep updated on all of the new information about Sjogren’s.
  • What I Do To Help Others: I try to educate people about Sjogren’s and about all autoimmune diseases. Please share that this month is special to me and a lot of other people too!
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9 comments

  1. Connie, you sure have a lot of illnesses on your plate!

    I have always thought that a Sjogren’s like syndrome accompanies CFS/MCS. I have most your symptoms–eyes, mouth.
    How do they test for Sjogren’s syndrome itself? Do you have to have a high ANA?

    Kerry’s last blog post..A Rabbit Hole in an MRI Machine?

    comment by Kerry — April 24, 2009 @ 2:23 pm
  2. Kerry, I believe for Sjogren’s they put a test strip in your eye and measure the ‘quality’ of your tears. I have been recently diagnosed with fibromyalgia and I experience the same symptoms – dry mouth and eye, photophobia etc. I’m waiting to be tested for Sjogren’s now.

    Connie, your blog is great and very informative. I very much enjoy visiting here.

    Kind regards
    Gisela

    Gisela’s last blog post..Diagnose: Fibromyalgie

    comment by Gisela — April 25, 2009 @ 9:46 pm
  3. Kerry, Sjogren’s does not have to accompany CFS/MCS. It does often accompany other chronic illnesses, especially autoimmune diseases. No your ANA does not have to be high. There are many blood tests that combined can help get a dx for SS. One the IGs is just for SS.

    As Gisela said, an Opthamologist can do a Shirmer Test and another test for the surface of your eyes. There are a number of tests used to dx Sjogren’s.

    comment by Connie — April 26, 2009 @ 3:47 pm
  4. Thanks for your kind words Gisela :) I’m trying to find a tool to translate your blog into English so I can read it. I hope that you get the information you need about your health condition. Not that I want you to have SS but if you know what you have, you can be treated properly.

    comment by Connie — April 26, 2009 @ 3:52 pm
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  8. I found a great resource for people with Sjogren’s Syndrome: Freespirit Medical Passports. When traveling, it’s important to have all your health information organized and easily accessible – especially in the event of an emergency. I love this service – it gives me such peace of mind knowing that my health history and medications are accessible to doctors abroad while I’m on holiday. If you’ve got a trip coming up, check them out!

    comment by ACoyle — April 10, 2012 @ 5:13 pm
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