What is Sjogren's Syndrome?
In the last issue of our newsletter, I discussed the increased incidence of autoimmune disorders in patients with mitral valve prolapse (MVP) and mentioned Sjogren's syndrome (SS). Sjogren's syndrome is an autoimmune disorder that can occur alone or coexist with rheumatoid arthritis (RA) or systemic lupus (SLE). It is found almost exclusively in women, and is usually diagnosed in middle age. However, symptoms of the disorder have probably been present for at least 10 years prior to diagnosis in the majority of patients. It is the second-most frequent autoimmune rheumatic disorder, surpassed only by RA.
In Sjogren's syndrome, the exocrine, or moisture-producing, glands are attacked by the body's own immune system. These glands include the tear glands of the eye and the salivary glands, so the major symptoms of SS are dry eyes and dry mouth. The loss of tears causes patients to complain of a scratchy feeling in their eyes, blurred vision, intolerance to light, and a sensation of a foreign body in the eye. These symptoms may worsen during the day and are aggravated by wind, air conditioning, or excessive use of the eyes such as is involved in reading or using a computer. Dryness of the mouth may lead to difficulty chewing, swallowing, speaking, and sleeping. Patients may be unable to swallow a piece of dry food such as a cracker or toast without using liquid and may require a glass of water on their night stand for use during the night. Oral dryness may lead to increased dental decay, periodontal disease, and oral ulcers. In addition, patients often experience dry skin, vaginal dryness, and dryness of the nose, throat, and upper respiratory passages, and are prone to frequent bouts of sinusitis and bronchitis. Other symptoms of SS may include chronic fatigue, muscle aches and weakness, arthritis, and - rarely - neurological, pulmonary, and renal problems.
If you suspect you might have SS, consultation with a rheumatologist is the best way to proceed initially. The diagnosis can be established with blood tests, an eye exam, and, most specifically, with a biopsy of one of the small glands in the lower lip. In addition to a rheumatologist, most patients need to be monitored regularly by a dentist familiar with SS, and by an ophthalmologist. Through its newsletter The Moisture Seekers, the Sjogren's Syndrome Foundation provides patients practical information and coping strategies that minimize the effects of Sjogren's syndrome. In addition, the Foundation, founded in 1983, is a clearinghouse for medical information and is the recognized national advocate for Sjogren's syndrome. For more information, visit the organization's Web site at http://www.sjogrens.org/
or call 1/800-475-6473.
—Nancy J. Sawyer, M.D., Ph.D.
Crocodile Tears: One Woman Copes With Sjogren's Syndrome
Doris J. Morris had long lived with and successfully managed her mitral valve prolapse syndrome when she started experiencing symptoms of a new and different medical condition in the early 1990s. Her mouth seemed constantly dry - a glass of water, already on hand to combat low fluid levels - was used more and more frequently simply for her to wet her throat and mouth. And even with that there was still the chronic sore throat and dry, hacking cough with which to contend. Morris couldn't understand it; she wasn't sick, and she wasn't - had never been - a smoker. "It was very embarrassing, to start coughing, especially in a public place, and be unable to stop," says the 64-year-old Lacey Springs, Ala., woman.
"I just didn't know what was causing that terrible cough."
She also didn't know what was causing the constant dryness in her eyes. And even more puzzling was the fact that along with that dryness came excessive tearing. Morris would later find out from the ophthalmologist who first suspected she suffered from a condition called Sjogren's syndrome that such "crocodile tears" often mislead patients. "You feel like you have too many tears when your eyes drip," she notes.
It was the pain and dryness in her eyes that drove Morris to visit that ophthalmologist - and to mention her symptoms to Dr. Phillip Watkins during one of her regular visits to the Mitral Valve Prolapse Center. Dr. Watkins recommended that she consult with a rheumatologist, who performed the saliva test that confirmed the diagnosis of Sjogren's, an incurable, autoimmune disorder striking 2-4 million Americans, many of whom go undiagnosed.
Nine out of ten individuals with Sjogren's are women. In Sjogren's syndrome, the body's immune system mistakes its own moisture producing glands for foreign invaders. The immune system then attacks and destroys these glands, thus causing the hallmark symptoms of dry eyes and dry mouth.
Morris says her rheumatologist suspects that her case of Sjogren's stems from a bout with arthritis in her 20s and 30s. (Medical sources say no single gene, microorganism or hormone is known to cause Sjogren's syndrome.) The physician initially prescribed a variety of medications for Morris to use to control her Sjogren's symptoms, but the problems she had with those led her to decide to cope "in a personal way, rather than a medical way." "I want to go as long as I can without medications," she says, noting that she manages her MVPS with Zoloft, Tenormin and Klonopin. "I probably drink more water now, am more faithful to it because I have to have it (to be comfortable)," she continues.
"I use artificial tears for my eyes, and of course the vaginal dryness is very uncomfortable - I have to use a lubricant on a regular basis."
Morris' advice to others who find themselves diagnosed with Sjogren's? "Fluids are important, exercise is important, and seeing your doctors on a regular basis is important," she says. "There are symptoms such as some of the ones I've been having recently, such as dizziness and inner ear-type problems, that are serious and need attention from a doctor." But one of the best ways Morris has of coping with her Sjogren's - and her MVP - she says, has nothing to do with her physical symptoms. "I try to think of one thing I can do every day that will interest me or help someone else," says the mother of three and grandmother of six, a lifelong homemaker and retired substitute teacher who volunteered for many years with the Arthritis Foundation. "I learned that from one doctor I had years ago, who suggested that his patients get up in the morning and get ourselves dressed and then go do something, even if it's nothing more than go to the mall and look around. "He wanted us to get out amongst people, and I found that that approach works exceptionally well for me. If your mind is not on yourself, that it's much easier to deal with the pain."
MY NEW NEIGHBORS
As soon as I saw him, I fell in love with my new neighbor. His quiet knock and hesitant appearance in my doorway led to my enraptured surprise at the sight of the handsome towheaded blonde with the bluest eyes I'd ever seen. He raised his arm hesitantly, then with a quick beam of a smile shouted "Hi! Ryan!" and pointed to himself. So what if he spoke like Tarzan, stood under four feet tall, and had brought his mommy along . . . he was the loveliest person I'd met in a long time. His mommy carried Ryan's baby sister Amanda. We all toasted our new friendship with Teddy Grahams, which, when I checked the box label, I found to contain .333 grams of sugar per teddy.
As I began to interact with Ryan on a regular basis, I also began to realize that this was a whole new way of life for my older body. Could I play with him, really? If I were to continue to write, walk, and exercise daily, finish the household chores, and play with my new neighbor, I had to rev up my commitment to organization - and obedience to my health regimen. I began to see 2-year-old Ryan as my personal trainer: "Watch!" he often tells me, then demonstrates something new he's learned. Yes, watch, I told myself. See what this young man can teach you about life's beginnings.
It was spring when we met, a time to bring out the backyard sports equipment. Games of badminton and throwing any sized ball were my first attempts at playing with Ryan. How long would I hold up without chest pain or exhaustion? By pacing myself (shoving the racket or bat, even the ball, into someone else's hand when I felt I was reaching my limit), I had no problems, either with pain or fatigue. Remarkably, much of the time when I came outside and my new neighbor immediately suggested a sport, I could move and laugh. But then there were those days when I found myself completely without energy . . . I began to wake up earlier. After all, when a sweet young thing knocks on my door at 9:30, I want to be dressed and beautified. Because of my mitral valve prolapse syndrome/dysautonomia, mornings are not easy for me; it is difficult for me to awake at a traditional morning hour of 7 or 8 a.m. because of my blood pressure. But I have discovered that if I move slowly in the morning, then graduate into warm-up exercises, I feel better.
I must begin my day with something physical to "pump up the body." With the new guy next door, I had not only to maintain but also expand my exercise and walking program. The times and locations might shift occasionally, but regularity of frequency must be preserved. I had to "clean up my act" in the diet area, also. What I eat makes so much difference in my body's life. I can literally feel my energy drain away when I drink caffeinated anything or use artificial sweeteners. Like many of you, I have an extremely sensitive nervous system. Seeing Ryan's plastic Buzz drinking container reminds me to keep my Chicago Bulls mug full of water nearby. When Mommy suggests that Ryan "take another drink," I do too. Together we reinforce the MVPS commandment:
DRINK MORE LIQUIDS
At first I wondered if I could hold Ryan's baby sister. When she moved next door, she was a mere four months old, but as the spring grew into summer, her weight increased. Because of worry and costochondritis (inflammation of the cartilage connecting the rib cage and sternum), my chest ached. However, my desire overruled my pain: I would hold my baby neighbor. I wanted to be a good neighbor, and babies need to be held. I put my pain aside and began to always hold her on my right side. Thus we developed a "holding" companionship without any grief to my body.
Of course, I didn't try for the Olympic baby-holder record. We learned together: I, when to set her down, and she, how to sit, pull up, crawl, and soon, walk! I "fly" her above the flowers so her tiny fingers may touch the petals. She coos over these new things. Leaves catch her attention, especially when the wind tosses them to wave "hello."
One day a friend phoned about a crisis in her life. Her burden weighed heavy on my heart . . . until I headed next door and held Amanda. There, while I cradled and cooed to her, I prayed for my friend. Life is better with a baby cuddled in your arms.
Perhaps you as parents or grandparents have experienced what I write. It's inspiring and my recent blessing. When they see me, Ryan squeals "Carol!" and Amanda jumps and points her delicate finger my way, wanting me. No one else joys in my presence as they do. I share their simple joys of quaking leaves, touching flowers, pretending, and receiving a giant hug each day from them. Having Ryan and Amanda as neighbors has opened a door into a happier - and healthier - life for me.
—Carol Hegberg
Carol Hegberg was diagnosed with MVP as a child, and has dealt with the syndrome and dysautonomia for 15 years. Through her column, she hopes to encourage others and offer ways to live with this disorder.
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