My Story...
I was diagnosed with Sjogren's Syndrome and Fibromyalgia Syndrome in December of 1998. It was in October of 1997, however, when I first began to experience problems. After a 6 week battle with bronchitis, I awoke one day with a general achiness running throughout my entire body. I thought maybe it was just the flu, but after two weeks the achiness had turned into very severe pain. When I went to my family doctor, I was told I probably had an infection that would run it's course in about 3 weeks. No surprisingly, three weeks later, I was only worse, certainly no better.
Now I was referred to a rheumatologist. After a fairly long examination, she came to the conclusion that I must have rheumatoid arthritis. I had some swelling in my ankles and feet which could not be explained. At the same time, I was forced to quit my job after a fairly long personal leave of absence. The pain was much to severe to even consider working. Therefore, I had no money and no insurance. My rheumatologist put off testing me for rheumatoid arthritis until I was able to get some help from the State. When finally that day came, my test for RA came back negative.
My doctor was stumped. She referred me to a psychiatrist, thinking probably my depression might be the cause of all this pain. My psychiatrist came to the conclusion that my depression was stemming from the terrible pain that I was in, that this mystery disease was the cause of the depression, not the other way around. After that, my rheumatologist decided to send me to another rheumatologist.
This doctor diagnosed me as having Fibromyalgia Syndrome. He sent me to physical therapy, but after three months I was no better. At this point, I do believe he was beginning to think that this was all in my head. Needless to say, I stopped seeing him.
After returning to my 1st rheumatologist, I was referred once again for a second opinion. (At this point it seemed more like a 5th opinion to me.) This is where I finally found out that I have Sjogren's Syndrome. He tested me for it, even though he did not think I suffered from it, and the test came back positive. He also diagnosed me as having Fibromyalgia Syndrome. This doctor is currently my rheumatologist still today.
Sjogren's Syndrome was a complete mystery to me. I had never heard of it. and all of a sudden I'm being informed that I have this disease. So I did some research, and with the help of The Sjogren's Syndrome Foundation, I learned that a lot of my symptoms could now be explained. Certain things I'd never even told the doctor we're suddenly explained in The Sjogren's Syndrome Hand Book. This is a wonderful publication, and if you have SJS or suspect that you might, definitely look into owning this book. It's also good for those of you who live with someone with this condition.
Sjogren's Syndrome is an autoimmune disease very similiar to Lupus and Rheumatoid Arthritis. It is known to cause dry mouth and dry eyes as well as fatigue. The severity differs in many of it's sufferers. Some people only get the dry eyes & dry mouth. Others, like myself, have all of the above plus painful joint and muscle pain. Combined with the Fibromyalgia Syndrome, it can be extraordinarily painful and exhausting. FMS alone often causes a large amount of muscle pain and cramping and endless fatigue.
Both of these conditions most often seem to develop in women. FMS is often seen in women of child bearing age, while SJS is most often seen in women over 50. I am proof, however, that younger women including children can have Sjogrens. I believe that I've suffered from this disease since I was around 13 or 14 years old. I've had terrible dry mouth for such a long time, and growing up I experienced many strange pains that were too intense to be called growing pains.
I have written a poem about how I feel in my worst hours. To read it, please click on the title below.
I also have many links to Fibromyalgia & Sjogren's Syndrome sites on my links page.
I suppose now I will tell you a little more about me. The truth is simply my life is fairly boring. I live in a small town in Pennsylvania where I was born and raised. I do a lot of reading and writing, and I watch way too much TV. The Sjogren's Syndrome & Fibromyalgia I suffer pretty much took control of my body, leaving me with very little I can do. However, they have not taken away my spirit. That continues to soar.
As you've probably noticed, I am big animal lover. I'm the very definition of "a cat person", but I also like dogs and all the rest of God's creatures. Nothing disgusts me more than the needless suffering of poor innocent animals. I have no sympathy for anyone who chooses to abuse a defenseless creature. In my opinion, they should be put in jail for a very very long time. Or perhaps they deserve to suffer the same torture they have inflicted upon their innocent victim. Next to child and domestic abuse, murder, and rape, I feel that nothing could be worse. I feel very strongly about this subject.
I've been listening to Billy Joel since 1994 when "The River Of Dreams" was released on radio. I have never heard a more talented recording artist in my life. His music touches my soul, and I believe I will be a die-hard fan until the day I die.
Of course, I am also very much into "The X-Files" I think David Duchovny is the most attractive man to ever grace this planet with his presence. Need I say more?
I would like to take this moment to thank all of my wonderful friends and family who have helped me get through the trials and hard times. I love you all so very much.
So thank you to my mother most of all and to my brother & sister, my sister's family, and my best friends Lisa, Jeanne and Krystal. Also thank you to all the wonderful friends I've meant over the Internet... Tonya, Stacie, Mark, Cynthia, Debbie, Shell, Wanda, Neil, Arlene, Melissa, Pam, Denise, Kristin & the rest of the gang at WebMD's Fibro/CFIDS chat room and The Sjogren's Syndrome Support List.
God Bless You All!
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