Lynne's Sjogren's Syndrome - Stories- Carrie's Sjogren's Story Page

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Carrie's Story

My name is Carrie and I am a 23 year old woman with Sjogren's Syndrome and Fibromyalgia. It took me two years to get an accurate diagnosis. I guess in that sense I was lucky. It usually takes much longer.

It started in October of 1997. I was working for a call center taking orders for a local catalog company at the time. One day I just woke up and I had pain. It felt like the flu. That's what I thought it was for quite some time, but it didn't go away. Instead, it slowly got worse.

I went to my family doctor and was told that I probably had a kind of infection. He wanted me to give it three weeks to see if I'd get better. Needless to say, I didn't.

I was soon referred to a Rheumatologist. Based on my symptoms, pain and stiffness in the joints and muscles, some mild swelling, and fatigue, my Rheumatologist came to the conclusion that I had Rheumatoid Arthritis. However, I was not tested at that time. I was on an unpaid leave of absence from a job where I had no health insurance, and I could not afford the test. I was given medication for RA, and over several months there was still no improvement.

Finally, I had to quit my job. The pain had gotten to the point where there was no way I'd be able to return to work. I applied for social security and was able to get medical assistance from the state. With that done, my Rheumatologist decided it was time I be tested. She was more than a little surprised when the test came back negative.

At this point, my doctor didn't know what to think. She was stumped. She sent me to another doctor who diagnosed me as having Fibromyalgia, but didn't even think to check for Sjogren's. He put me on an exercise program. It didn't help. After this, he hinted that perhaps this might all be in my head. I was insulted and went back to my regular Rheumatologist. However, she still did not know what to make of my case.

Two years after the onset date, I was sent to another Rheumatologist in a nearby city. After my initial visit, he agreed that I had Fibromyalgia Syndrome, but he also wanted to check me for Sjogren's. I had no idea what he was talking about. I'd never heard of such a disease. I didn't ask too many questions because he said that he didn't believe I had it. He was just checking to be sure. My test came back positive.

At this point, I took it upon myself to get educated. While he dealt with treating the symptoms, I dealt with finding as much information as possible. I found what I was looking for at The Sjogren's Syndrome Foundation. The official handbook they offer helped me understand my disease, and it explained problems I'd been having for years.

I've had dry mouth since I was a teenager. At one point, a doctor had me tested for diabetes because I was constantly thirsty. Nobody ever told me about Sjogren's then. I'm guessing I've had it for a long time.

Today, my health isn't too good. The pain in my muscles and joints has not gotten better. It may have even gotten worse. I've recently developed dry eyes and the fatigue has become exhausting.

However, I try to stay positive. Sjogren's Syndrome is simply a part of who I am. There is a reason I have this disease. Who am I to ask why?

Thank you for taking the time to read my story. Take care and hang in there. A cure may be right around the corner.

Disclaimer

The author of this page does not promote, support, or recommend any particular treatment or medication for any medical condition. The opinions expressed in stories or links are the responsibility of their authors. No treatment should be undertaken without the supervision of a physician.