My Life with Sjogren's Syndrome

Sjogren's Syndrome (show-grins) is an autoimmune disease that causes a person's white blood cells to attack moisture-producing glands. Common symptoms include chronic dryness of the eyes, nose, mouth, throat, skin and vagina.

Sjogren's Syndrome is often accompanied by neurological problems including lack of concentration and brain fog, arthritis, muscle pain, chronic fatigue, stomach problems such as heartburn, acid reflux and pancreatitis, recurrent bronchitis and other lung diseases, difficulty swallowing, and peripheral neuropathy (numbness and tingling in hands and feet).

My symptoms began when I was in my late twenties. Every time I visited the dentist I had multiple cavities. I suffered from frequent outbreaks of canker sores and developed deep cracks in the corners of my lips that would bleed and become infected.

Over the course of two years, I underwent ten root canals. All but two of the root canals failed; leading to extraction. By the time I was 31 years young, I had lost more than half of my teeth due to chronic decay.

I can't tell you how many lectures I received from dentists. I was told I wasn't brushing properly or flossing enough. I was accused of eating too much sugar. Instead of helping get to the root of the problem, the dentists placed the blame on my lack of proper oral hygiene although I was doing everything they recommended. Every time I left the dental office I was in tears and felt like a hypochondriac who needed a shrink more than a dental professional.

By the age of 33, I felt like a frail elderly woman. I was a single mother of a two year old and could barely keep up with my high-energy child. She had to grow up with a mom who was too tired to do the normal things mother's should do with their children.

Instead of heading to the park, we spent countless hours watching movies, reading books, doing crafts and coloring. We were unable to visit the zoo, spend the day at an amusement park, or take fun-filled vacations. Everything revolved around how well mommy felt that day.

I struggled to get out of bed, hold a full-time job, take care of my daughter, or engage in simple household chores. Weekends consisted of lying on the sofa, taking multiple naps and feeling as if I had been run over by a Mac truck. The fatigue and pain had taken control of my life and left me feeling like a prisoner in my own home.

Over the course of three years, I underwent a battery of tests. Everything came back negative. My physician felt I was suffering from depression and prescribed an anti-depressant. Unfortunately, that only made matters worse.

We tried multiple medications, all with the same results. I would break out in rashes, become violently ill or begin hallucinating and having suicidal thoughts. The drugs were worse than the symptoms, so I threw in the towel and decided to suffer in silence.

About a year later, a friend introduced me to alternative health. I began researching everything I could find and decided to consult with a naturopath. Blood tests revealed I had high levels of pesticides and mercury.

While I cannot prove my theory, there is considerable controversy about amalgam dental fillings and mercury poisoning. Considering the number of amalgam fillings I had, I strongly believe they were the cause of the high levels of mercury in my body.

In 1991, I had a new home built on property that had once been used to grow corn. Within six months of moving into our new home my daughter and I began experiencing flu-like symptoms, extreme headaches, joint pain and stiffness, muscle aches and chronic fatigue. Soil tests revealed high levels of pesticides which were leeching into our home and ultimately absorbed into our bodies.

My daughter and I underwent chelation therapy; a process to remove heavy metals. We were provided with a list of vitamins, minerals, herbal supplements and nutritional advice. After following the protocol, we began feeling normal again and I regained an energy level I hadn't experienced since I was a teenager.

Although my energy improved, I continued to experience brain fog, difficulty swallowing, dental decay, joint pain, and numbness and tingling in my hands and feet. My fatigue seemed to become cyclical and worsened in extreme heat and cold. If I over-did-it, my body required twice as long as the average person to recover.

In 2005, we relocated to Colorado. It was a very stressful time. Not only did we have to sell our home, but were leaving our family and friends and moving 1200 miles away from them. I had never lived more than 20 miles from my family and the thought of living half-way across the country and starting a new life was terrifying.

The move to Colorado just about killed me. The physical demands of packing, cleaning, unpacking, and riding in a moving truck for two days wreaked havoc on every inch of my body. I was so tired and in so much pain I could barely function. As much as I dreaded visiting a doctor, I desperately needed relief. Even more, I needed an answer to what was wrong with me.

I explained to the doctor that I had been suffering for nearly 20 years and provided a list of all my aches and pains, the dental problems, the dry mouth and eyes, the numbness and tingling in my feet, and the fact that my pancreas felt like it was so inflamed that it was going to explode.

She ordered a battery of tests and this time I tested positive for rheumatoid factor, ANA (Anti-Nuclear Antibody), SS-A, elevated ESR (Erythrocyte Sedimentation Rate) and IGs (Immunoglobulin's).

My ophthalmologist performed the Schirmer Test which measures tear production. He placed a thin piece of paper inside my lower eye lids and left it there for five minutes. Normal tear production will saturate 15mm of the paper strip. My saturation level was less than 4mm.

Since my eyes produce inadequate moisture I need to use tear drops on a daily basis. I prefer to use Tears Naturale or eye drops purchased through health food stores. Prescription eye drops and ophthalmic solutions are available as well.

I drink tons of filtered water to combat dry mouth. Sugary drinks only add to the problem, but sometimes I can't resist a glass of homemade sweet tea. Fruit drinks are off-limits because they add to dental decay. They can also exacerbate heartburn and acid reflux. Alcohol is a no-no, but sometimes a girl has to have a glass of Pinot Noir or a chocolate martini.

For joint pain and muscle aches I use Tiger Balm, BioFreeze and Arnica Gel. A soak in the tub with a cup of Epsom Salt works well and seems to help with sleep. I have a plethora of homeopathic remedies that I use on an as needed basis.

Proper diet is essential for better managing Sjogren's symptoms. Scientific research provides evidence certain foods cause inflammation within the body. These include meat and dairy products, eggs, gluten, flour, corn, corn oil, corn syrup, sugar, processed foods, MSG (mono-sodium glutamate), nightshade vegetables (peppers, white potatoes, eggplant, tomatoes, cherries, tobacco), coffee and alcohol. I know, all the fun stuff is on the inflammation list!

Autoimmunity is a disease that causes your body to attack itself based on an overactive immune response. Inflammation is the result of over-activity. If you avoid foods that cause inflammation, you can better manage your symptoms.

Currently, there is no cure for Sjogren's Syndrome. It is classified as a systemic autoimmune disease; meaning it affects the entire body. Symptoms can come and go, move around, stay the same, worsen or in some cases, go into remission.

Since being diagnosed with Sjogren's, I have met many others who deal with this disorder. It affects everyone differently and each person has worked with their healthcare practitioner to develop a treatment protocol that improves their quality of life. Some require immunosuppressant medications while others prefer holistic treatment and alternative therapies.

The chief complaint amongst people with Sjogren's is dry mouth and eyes. Many suffer from chronic fatigue, joint and muscle pain. Others have serious side effects involving their kidneys, liver, pancreas, lungs, blood vessels and central nervous system.

Sjogren's Syndrome is often accompanied with other autoimmune diseases including lupus, multiple sclerosis, rheumatoid arthritis and fibromyalgia. People with Sjogren's or multiple autoimmune diseases are at a higher risk for developing lymphoma.

Although many people have not heard of Sjogren's Syndrome, it is one of the most prevalent autoimmune disorders. Experts claim more than 4,000,000 Americans are afflicted with Sjogren's and nine out of ten are women.

One thing I learned on my healthcare quest is Sjogren's Syndrome mimics other conditions. If you are having any of the symptoms mentioned in this article take time to create a health journal. Write down any foods you have eaten and how you feel afterwards. Take note of activities that caused pain. Note if you have trouble swallowing or experience frequent heartburn. Pay close attention to your body and how it is reacting. Doing so can go a long way in helping your doctor get to the root of the problem.

That being said please note I am not a doctor and am not offering medical advice. Statistics show Sjogren's is often overlooked and requires an average of seven years to obtain proper diagnosis. I suffered for nearly 20 years and was made to feel like I was a nutcase. I don't want that to happen to you.

On a personal note, there is considerable guilt associated with this disease. It can rob you of doing things you want to do simply because you do not have the strength or stamina. I feel my daughter missed out on being a kid because I was always sick or too tired. I feel as if I am burden to my husband because he has to do so many things that I am physically unable to do. If you aren't careful you can quickly become a victim instead of a survivor.

Living with Sjogren's Syndrome is not easy, but there are things you can do to take control of your health and feel as well as possible. Don't be afraid to explore alternative therapies. Indulge in massage therapy. Try acupuncture or acupressure. Attend a yoga class. Meditate. Engage in modest exercise. Eat healthy food. Spend plenty of time with people who make you laugh and feel loved. Most of all be grateful for what you can do and enjoy every precious moment.