My name is Sherry. I'm 55-years-old, a wife, mother of 3 grown daughters, and grandmother to 7 grandchildren. My attitude towards this problem is a day-to-day one. There are positive days, and then there are the bad days. Days where I feel sorry for myself, because I just do not "feel well."
One year ago, on July 25, 2003, I was diagnosed with Sjogren's. That day will remain etched in my mind forever. The rheumatologist who gave me the news was genuinely shocked herself. She had been away on a two week vacation, and had not studied my chart prior to my appointment. She was upbeat and cheery, thumbing through my chart routinely, reciting blood test #'s on various tests. When she reached the page with the Sjogren's blood results, a grave look appeared on her face, she put my chart down, and placed her hands on the table. Her words, "I don't have an easy way to tell you this, but you are very ill with Sjogren's Syndrome. This is a serious illness, and together we must work on a protocol to fight it. You must have a positive attitude, thinking 'I'm living with Sjogren's, not dying with it.'" I could hardly get my breath to ask questions, as although I knew something was wrong, I was still surprised to hear it.
For me, personally, the fatigue is the most frustrating. I've always been energetic, peppy, and ready to go or do anything with my family, etc. This change has been the hardest to accept.
Constant fatigue, yet the inability to sleep at night, due to pain all over my body, is what precipitated going to a rheumatologist. The first visit she diagnosed Fibromyalgia and Chronic Fatigue Syndrome. She authorized a battery of blood tests, and sent me on my way. From the outset, I knew something else was going on with my body; however, Rheumatoid Arthritis and Lupus tests came back negative. So I reluctantly accepted the results. She did, on the second visit, prescribe Elavil, which allowed for deep sleep and helped with depression. Also, at that second visit, the rheumatologist approved carpal tunnel surgery on both hands. I was having numbness and burning at night, which also interrupted sleep. I believe this malady is connected to Sjogren's, too.
On a business/pleasure trip with my husband, whom, by the way, has been so understanding, to Chicago, in October, 2002, I developed a rash, high fever, and genuine malaise. Three days later in the car headed for home, I got the worst pain on the right side of my face. My husband pulled off the road, and my face was swollen badly. We thought I had mumps. The pain was excruciating. The trip home to Florida seemed endless.
When I got home, I saw my PCP, and he prescribed an antibiotic. He referred me to an ENT. The right submandibular gland was infected and enlarged. Surgery was needed, as the medicine didn't help the infected gland. The pathology report came back negative for cancer. I was so thankful! However, my good health never returned- I kept a low grade fever, suffered debilitating fatigue, and slipped into depression. I began to think I had undiagnosed lymphoma. Fortunately, that wasn't the case.
Luckily for me, I have a good friend whom has Lupus. She said that I had the classic symptoms of an auto-immune disease, and suggested that I insist on having another complete blood profile done by the rheumatologist. Needless to say, the doctor thought this wasn't necessary, based on the earlier tests and their negative results. (She knew about the gland problem and its removal, and never mentioned Sjogren's Syndrome to me. I had also told her my mouth was quite dry, and had a bad taste all the time.) Due to my persistence, she gave in, had the tests run, and the result was Primary Sjogren's. Both the Anti-Ro/SSA and Anti-La/SSB were positive. My C Reactive Protein # remains quite high, but my Sed rate is normal.
Several months ago, I was diagnosed with Celiac Sprue, another auto-immune disease. This illness is quite prevalent with Sjogren's and Lupus. Its symptoms are bloating, gas, and diarrhea. You're intolerant to wheat and gluten, a protein. Again, my prior rheumatologist missed the symptoms. I was very ill with chronic diarrhea, but she "assured" me this problem wasn't related to Sjogren's. It goes without saying, I am no longer with her practice. My current rheumatologist diagnosed the problem right away. At this point, I need to say this is when it behooves being a member of the Sjogren's Syndrome Foundation. It is through their letter, The Moisture Seekers, that I called the right person to help me find a responsible and knowledgeable rheumatologist. I also located someone from the local Sjogren's support group to help in times of frustration re this illness. Since my diet has changed accordingly, my stomach problems have improved.
I read with keen interest each person's story, and I could empathize and relate. Thank you for allowing me to share mine, as this has been cathartic.
Also, thank you, Lynne, for this valuable web-site!
If anyone would like to e-mail me, please feel welcome.
Story Copyright © 2004-2012 Sherry
Page Design Copyright © 2004-2012 Lynne Messina
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.