Road to Sjogren’s Diagnosis was Exhausting

Endless, unrelenting fatigue and sore muscles were the symptoms that first had me seeking help from the doctor, followed by joint pain not long after. I began discussing these complaints with my family doctor in the early 1990s. At the time I had three young children at home; I worked full-time, and was a volunteer involved with my children’s extra-curricular activities.

Although these symptoms started mildly, they became a source of concern as they continued to escalate in severity despite my healthy lifestyle. I did not drink or smoke, slept really well for eight hours per night, ate nutritious meals, and got regular exercise. Still I did not feel well. My doctor told me I was a busy mom, and hence my fatigue and soreness. He did a few blood tests to ensure my iron levels, B12, and the basics were all okay, all came back normal. He said I did not have Fibromyalgia, nor did I have chronic fatigue. I believed him, but I also knew I was tired and sore all the time. Something was not right.

In desperation to get relief I went to physiotherapy. I told the therapist about my soreness and fatigue and asked if she could possibly provide treatments that might be helpful. After listening carefully, she asked numerous questions, finally ending with, “Have you ever been tested for Lupus?” I explained I had requested testing for autoimmune connective tissue diseases but the doctor assured me I did not have Lupus, or Rheumatoid Arthritis, which by this time was my biggest fear. She told me to go back and ask again.

I did, and he again refused. He assured me he believed I had the symptoms, he did not think I was imagining them (so he told me to my face but I wonder if perhaps behind my back he did think I was), however the symptoms were of no concern. Maybe to him they were not, but they sure were to me. Finally he sent me to an internal medicine specialist, I found out in hindsight he wrote a letter to my family physician saying I was just depressed. By this time, he was right, I was becoming depressed because I knew there was something wrong yet he was making me feel like I didn’t know my own body and what was normal for me to feel.

So, because of what the physiotherapist had said, I sought out a different doctor at a clinic I had never been to. He listened, and then said he’d like to run numerous blood tests before we discussed the possibilities further. A couple lab tests came back positive; he set up a referral for me with a Rheumatologist immediately.

The first appointment with the Rheumatologist was rather brief, he did check my joints, and assured me I did not have Rheumatoid Arthritis, that I had great range of motion and strength, and most importantly no swelling. Most of the rest of the appointment was spent with him asking me questions about my family health history as well as my own. He asked me about my work and home life. I honestly think because I was still doing all my regular activities he dismissed the possibility of anything being seriously wrong. In fact, he said so. He assured me I was perfectly healthy, had nothing to worry about, and by all means I should continue to do all I had been doing. “But”, he said “I will just run a few more highly specialized tests to be sure, but go home and don’t worry, I’m sure they will be fine.”

Two weeks later, he called me and said he needed to see me at his office again, three hours away in the closest city to where I live. This time he did a very thorough examination, starting oddly, I thought at the time, with my mouth. After the physical exam, he told me I had Sjogren’s Syndrome. Both the SS-A and SS-B antibodies were found in my blood along with positive ANA and RF. I definitely had Sjogren’s Syndrome. He explained it was nothing to worry about. I was thrilled. I really did have something wrong with me; I had not been imagining it. He explained Sjogren’s was nothing I really needed to be too concerned about, except staying out of the sun as the SS-A antibodies were linked to sun-sensitivity that could trigger further disease activity. I heeded his advice, was fastidious with the use of sunblock and avoided the sun during peak hours.

Little did I know at the time, he, like many other Rheumatologists did not know much about Sjogren’s. I was excited to have a name for what I had been suffering with, since it was now May 2002, just weeks before my 40th birthday. Approximately ten years had passed since I had begun mentioning the fatigue and pain I had. I remember telling my long time family doctor, “I could go to sleep anywhere, anytime, and sleep and sleep and sleep, all I need to do is lie down.”

Recently the Sjogren’s syndrome Foundation has acknowledged not just dry eye and mouth as “hallmark symptoms”, but fatigue and joint pain as well. May I join numerous other Sjogren’s patients in saying: FINALLY!

In upcoming posts I will explain how the fatigue and joint / muscle pain has affected my life, as well as the best advice a Rheumatologist ever gave me.

To learn more about the diagnosis of Sjogren’s and the 13 types of fatigue experienced click on the following links:

Multiple Tests Required to Diagnose Sjogren’s

13 Types of Fatigue Sjogren’s Patients Experience

18 thoughts on “Road to Sjogren’s Diagnosis was Exhausting

  1. So very interesting Suzanne. I would love to know how many people these articles will help other people out. It’s amazing.

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  2. Thank you for sharing such personal information. Women are always brushed off when they complain about being tired or depressed. Add your joint pains and still they wouldn’t listen. Surprise. I’m so glad you found someone who WOULD listen!

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  3. Really great Susy, thank you! I appreciate all of your writings. As you know, I went through almost the exact same thing…(sigh..) life goes on..
    I love the “But you don’t look stupid!” Made me laugh bc it’s so true, sad but true.
    There’s always more to learn about Sjogren’s!

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  4. Your story resonates with me so much and my blood was boiling reading how dismissive your doctor was to your symptoms. I have been plagued with an issue for almost two years, and until it was diagnosed in Oct, I was offered anti-depressants and told that I just needed to poo. Ahhhhh. We know our bodies and it is so frustrating that we are made to feel crazy about how we feel. Anyway, I am so happy you FINALLY were diagnosed.

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    • That is one of my biggest pet-peeves: docs offering people with physical illnesses anti-depressants without investigating other causes for their ill health.
      Doctors may know medicine but we know our bodies. Blood-boiling is exactly the expression to use for the frustration. Glad you finally got a diagnosis!

      Liked by 1 person

      • Docs too quickly pull out their pads of papers theses days, it drives crazy!! I was stunned when she told me that she would put me on anti-depressants and never went back to see her. It was obvious she didn’t believe me, nor did she care. I am glad I found a Naturopath who did believe me and knew instantly something was wrong. Sadly, we have to advocate for our own health. I will say this, though, I feel incredibly blessed to live in Canada and have health care. I am truly blessed.

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