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Living with Lupus

Systemic lupus erythematosus, often simply called lupus, is an autoimmune disease of the connective tissues. It can cause rashes, joint and muscle pain, and tiredness, as well as difficulty thinking clearly.

Woman looking out of a window

Lupus symptoms can come and go—you may feel great on some days and not so great on others. People with lupus often report feeling less satisfied with their lives than their friends who don’t have lupus. Living with lupus during a flare of symptoms such as pain, memory problems, and sensitivity to light, can be difficult. And most people with lupus have to keep working with their doctor even when they're feeling good.

Despite the challenges, it’s best to be actively involved in managing your condition. People who do so feel better about themselves and their diagnosis. You might even have less pain and need fewer doctor visits.

Here are some of the steps that can help you better manage your lupus:

  • Stay in touch with your doctors. Regular doctor visits can help you keep your treatment plan up-to-date. They also give you the opportunity to make your doctor aware of new symptoms or a symptom that isn’t well controlled by your medications.

  • Work with a cognitive rehabilitation specialist. Some people have problems with memory and thinking clearly. Trained professionals can help you develop systems to stay organized and better remember names and items on your to-do list.

  • Change your environment. Avoid environmental stressors, such as too much sunlight or exposure to indoor fluorescent lights. You might need to change the lighting in your home or office, adjust the layout of your workstation, or ask for an ergonomically designed chair (a chair designed to support your body’s natural movements). Your need to have accommodations at work is protected by the Americans with Disabilities Act, so don’t hesitate to ask for changes that will make you more productive and less uncomfortable.

  • Manage stress. Stress can be a trigger for symptom flares, and it can make living with lupus more difficult. As you get to know how your body responds to various situations, you will know when you should rest, cut back on certain activities, and practice relaxation techniques.

  • Get enough sleep. Fatigue can be a problem for up to 80 percent of people with lupus. A regular sleep schedule can help you battle fatigue, stress, and pain. You might also need to make some changes in daily habits, such as cutting back on caffeine, to support good sleep habits.

  • Treat depression. It’s not surprising that people with chronic diseases like lupus sometimes struggle with feelings of sadness and hopelessness. Talk with your doctor if these feelings last for longer than you would like or expect.

  • Take extra calcium and vitamin D. Many people who have lupus take steroids to manage symptoms. Although this may help you feel better, it also increases your risk for osteoporosis (thinning of the bones) in later life. Make sure you are getting enough calcium and vitamin D to protect your bones.

  • Exercise. People with lupus should be up and moving on a regular basis. When you plan your exercise routine, include a variety of activities to keep all your muscles and joints strong. Low-impact activities, especially swimming, are best.

  • Eat a balanced diet. Aim for a diet that contains many fruits and vegetables, as well as lean protein and whole grains. Make sure you get omega-3 fatty acids, healthy fats that have been shown to help people with lupus. You don’t need to avoid foods, except alfalfa products, which can make symptoms worse.

  • Get support. People who have lupus need a strong support network. Friends and family are always good resources. You might also want to join a lupus support group with people who understand exactly what you're going through. Ask your health care provider for a recommendation or contact Lupus Foundation of America.

  • Don’t smoke. Smoking makes lupus worse. If you smoke, talk with your doctor about a smoking cessation program.

  • Use sun protection. People with lupus are often sensitive to sunlight. It’s a good idea to wear sunscreen if you are going to be outside for more than a half-hour. Hats, sunglasses, and long sleeves and pants are also advised.