Life With an Autoimmune Disease

If you have general, lingering symptoms, you may be suffering from an autoimmune disease -- which means your immune system is attacking healthy tissue.

Medically Reviewed by Charlotte E. Grayson Mathis, MD on November 09, 2003
5 min read

Your first symptoms of an autoimmune disease may be general, such as fatigue, low-grade fever, and difficulty concentrating, making autoimmune diseases difficult to diagnose at first. You also may feel depressed and consult a doctor for that.

According to Mary J. Shomon, author of the book Living Well With Autoimmune Disease: What Your Doctor Doesn't Tell You ... That You Need to Know, what ensues after registering these complaints may be an odyssey to pinpoint which of the almost 60 different autoimmune disorders you might have, all of which affect the body differently.

About 50 million Americans -- the vast majority of them women, especially women of working and childbearing age -- suffer from autoimmune ailments. Rheumatoid arthritis, type I diabetes, psoriasis, alopecia, lupus, thyroid disease, Addison's disease, pernicious anemia, celiac disease, multiple sclerosis, myasthenia gravis, Guillain-Barre syndrome -- these are just a few of the ailments that scientists now think stem from a common phenomenon: the activation of the body's immune system against the body itself. Also suspected of having this as a component are chronic fatigue syndrome and fibromyalgia.

That such different-seeming diseases as psoriasis and diabetes could stem from a common cause actually is a relatively new notion, according to Noel R. Rose, MD, PhD, professor of molecular microbiology and immunology and pathology at the Johns Hopkins University in Baltimore. Back in the early days of the last century, he says, the idea took hold that if the immune system were to benefit us, it would have to be warding off foreign invaders from outside the body.

Now, scientists know that the immune system is a set of actions and reactions that can be triggered by a number of things besides an invading germ, virus, or bacteria. One thing that puts you at risk for being attacked by your own immune system is your genetics, says Rose. In other words, if your parents have a predisposition to autoimmune disease, you may, too. "And it's an overlapping inheritance," Rose says. "If you have one autoimmune disease, you may have more -- and you may have different ones than your parent did (or your siblings do)."

Another common characteristic of all autoimmune diseases is that it is thought that an outside agent is required to start the process. Even with a genetic tendency, a person may not develop an autoimmune disease without an environmental influence to set it off. Examples of these are infections, certain foods (iodine or gluten products), and toxins (some drugs, smoking, certain hair dyes, chemicals in the workplace).

Dozens of culprits have been identified. Shomon reels off a list of possible suspects in the more common autoimmune ailments: hair dye and certain drugs for lupus, silica exposure for scleroderma; gluten for diabetes; mycoplasmas for rheumatoid arthritis; measles virus for Epstein-Barr; coxsackie virus for diabetes; smoking for thyroid, lupus, and arthritis; hepatitis B infection for multiple sclerosis. She says physical trauma can also touch off the immune response.

As the disease develops -- or more than one, as Rose points out -- vague symptoms start to appear, such as joint and muscle pain (very common), general muscle weakness, possible rashes or low-grade fever, trouble concentrating, or weight loss. More specific signs can point toward something being wrong: numbness and tingling in hands and feet (also common), dry eyes (common), hair loss, shortness of breath, heart palpitations, or repeated miscarriages can also be caused by an autoimmune response.

Although autoimmune disorders can make life miserable, they usually are chronic and not fatal, Shomon says. Most are handled by a range of doctors from internist to rheumatologist to dermatologist. "There is no such thing as an autoimmunologist," she says. Usually, it's the researchers that are seeking to attack the disorders as a common group.

According to Rose, some approaches being tried include a complete "reboot" of the immune system -- the famous bone marrow transplant. "This is only tried if other treatments have failed," he says. "The idea is that if the entire immune system is erased, it might to a better job the second time around." Doctors at Johns Hopkins use a chemotherapy drug called cyclophosphamide to "reboot" the immune system. This has showed promise in a number of lupus patients.

If the causative agent of the disease is known, a vaccine can be developed. Immunoglobulin or antibodies are being used in children with the heart disease called Kawasaki disease, as well as Guillain-Barre and multiple sclerosis.

If you suspect you may have an autoimmune problem, it's very important to identify and deal with any food allergies, according to Shomon. The main offenders are wheat, dairy, corn, soy, fish (especially shellfish), nuts, and fruits. High sugar, she contends, stresses the immune system. Make sure you eliminate trans fats and other bad fats and get enough good fats such as olive oil, fish oil, and avocado.

You also want to minimize infections -- wash your hands frequently. Take care of your teeth for the same reason: Gum diseases leak triggers into the body. Some people even lavage their noses with warm salt water to remove possible troublemakers.

Each autoimmune disorder also will have separate dietary and therapeutic recommendations. It's important to follow your doctor's orders. This is not a quick fix -- it's a lifestyle.

For more information, check out the web site of the American Autoimmune-Related Diseases Association,

Star Lawrence is a medical journalist based in the Phoenix area.