In-Depth with Lupus

Lupus is an autoimmune disease, which means that the body’s immune system mistakenly attacks its own cells. Lupus affects the lungs, heart, muscles, joints and skin. Joint problems are the most common. There are about 1.5 million people in the United States who have lupus, and it’s estimated that 10,000 of them are children. About 90 percent of the people who have lupus are women.

 There are three types of lupus:

• Systemic lupus erythematosus (SLE). This is the most common type. It affects the organs and joints
• Discoid lupus. This affects mainly the skin.
• Drug-induced lupus. This occurs in about 10 percent of cases, and generally the symptoms disappear or become much milder if the medication is stopped.

Researchers aren’t sure what the cause is, but genetics may play a role. Many experts believe that a person may have the predisposition to develop lupus (more of a likelihood), and then something happens to trigger it. These triggers can include infection or extreme physical or emotional stress.

For example, one woman we spoke with last summer, Rita, says that her lupus developed after she was in a car accident. After the accident, she says, “I couldn’t bounce back. I had chest pains, weakness, my hands never un-swelled…there wasn’t any one thing, but just a lot of little things.” Soon after that, she was diagnosed with lupus. 

Rita’s reaction to finding out she had lupus was “utter shock,” she says. And knowing that it was something she’d have to live with was especially difficult.  “It was harder mentally, because it’s a chronic condition,” she says. “I was always very independent, and I was an athlete. I kept saying to myself, ‘It can’t be lupus, it must be arthritis.’ The first year was scary and frustrating. But I said my prayers and asked for guidance.”

What are the symptoms?
Lupus is often difficult to diagnose, because the symptoms can be mistaken for those of other diseases. Some people have just one or two symptoms, while others have more. Most common symptoms include: 

• Red rash or color change on the face, often in the shape of a butterfly across the nose and cheeks
• Painful or swollen joints
• Fever for no known reason
• Chest pain with deep breathing
• Swollen glands
• Feeling tired all the time
• Unusual hair loss
• Pale or purple fingers or toes from cold or stress
• Sensitivity to the sun

Lupus often happens in cycles of so-called “flares” (when symptoms are acute and painful and you feel tired and run down), and remissions, when you generally feel pretty good and can function well. Treatment is geared toward minimizing the impact and frequency of flares and increasing the duration of remissions. 

How is lupus treated?
There’s no current cure for lupus, but there are things you can do to manage the symptoms. Many doctors prescribe corticosteroids, such as prednisone, to control inflammation. There are also medications that can help with joint swelling, and common over-the-counter medications you can take for pain. Your doctor will monitor you regularly to make sure you’re getting the right medication dosage.

Lifestyle factors that can help you manage your lupus
It’s possible that if you make comprehensive lifestyle changes, you’ll be able to decrease the amount of medication you need and reduce the incidence and severity of flares. This requires an overall approach to and assessment of food, activity level, job, stress level and general outlook on life. 

Food intake: First off, it’s important to keep your weight in a healthy range. The less extra weight you carry, the less weight you have on your joints. And less weight also makes it easier to exercise, which is also important. So portion control is essential. If you’re not sure what your portions should be, talk with your doctor or a dietitian for help with this. 

►        Foods to include regularly in your diet are: 
→  Omega-3 fatty acids, which can help reduce inflammation and swelling of the joints. Foods containing omega-3s include

• Coldwater fish (salmon, tuna, mackerel)
• Flaxseed oil
• Walnuts
• Leafy greens
• Fish oil supplements
• Canola oil
• Eggs that have been enhanced with omega-3s (this will be on the package label)

→  Foods containing ginger and turmeric. (There are also supplements that include ginger and turmeric, so ask your doctor if these might be helpful to you.). These spices are thought to help decrease inflammation. 

→  Fresh fruits and vegetables. 

►        Foods to AVOID
            It’s as important to stay away from some foods as it is to include others. Foods that you want to limit include 

→   Hydrogenated fats. These are found in most snack foods, such as potato chips, corn chips, crackers, cookies and French fries. 

→   Polyunsaturated fats (sunflower, safflower and corn oil) 

→   Margarine 

Other, equally important components of managing lupus include:

Regular exercise: It can be very difficult to make yourself exercise, especially if you’re feeling exhausted and your joints are hurting. On the other hand, regular exercise can actually help improve your joint pain and make you feel less tired. Swimming and water aerobics are two activities that tend to have minimal impact on the joints. For some people, walking may work well. If you’re having trouble finding an exercise that you can do, be sure to talk with your healthcare team for advice, because regular exercise is one of the best things you can do for yourself when you have lupus. 

Part of the art of living successfully with a chronic condition is learning how to control your illness rather than allowing your illness to control you. This isn’t always easy. Lupus can make you feel exhausted, weak and in pain. It can be overwhelming. 

But many people are able to have a sense of control, even over a disease like lupus, by making certain lifestyle decisions in other areas as well. Here are a few suggestions: 

Learn to set limits. With your children, your friends, your spouse, your co-workers. This is hard, especially if you enjoy parties, dinners out and other types of gatherings. If you have lupus, you usually have to pick and choose your activities carefully, and learn to say no when you know something’s going to tire you out. The upside of this approach is that it allows you to conserve more energy for things you really need to do for yourself, such as getting regular exercise. 

Analyze your job situation. It’s not easy to change jobs, but if the work you do is especially difficult physically or mentally, it’s not a bad idea to see whether there are other positions, maybe within your company, that might be easier on you. 

Manage stress: Whether it’s prayer, meditation, a hot bath or listening to music, be sure to take time for yourself to relax. 

Cultivate your spiritual or religious side. Focusing on your fundamental beliefs and things that have special meaning to you enables you to put your life in perspective and appreciate the good things.

One last piece of advice comes from Rita, the woman who was diagnosed with lupus after she was in a car accident, and that is: read as much as you can about this disease. Ask a member of your healthcare team to recommend a good book or two. The more you know about lupus, the better for you.

For more about lupus, read about ways that Rita has learned to adapt to her disease by making changes in her friendships, her relationship with her daughter and her job.

Source:
N. Hanger, Lupus the First Year, Marlowe & Company, 2003; National Institute of Arthritis and Musculoskeletal and Skin Diseases; National Lupus Foundation of America.