What Is Lupus?
Systemic lupus erythematosus is a chronic autoimmune disease that can affect the joints and almost every major organ in the body, including the heart, kidneys, skin, lungs, and brain. A person’s risk of developing lupus appears to be determined by genetic (hereditary) factors. However, the onset of the disease may be triggered by environmental factors such as infection, sunlight, or stress. In autoimmune disorders such as lupus, the immune system, which is designed to protect against infection, mistakenly attacks the body’s own tissues and organs. The major hallmark of this autoimmune attack is inflammation. The course of lupus varies and is characterized by alternating periods of flares (increased disease activity) and remissions. Some people with lupus experience only mild symptoms and have few complications. Others experience frequent flares that lead to moderate or even severe complications.
What Are the Warning Signs of Lupus and How Is it Diagnosed?
Unfortunately, the warning signs of lupus can mimic the warning signs of other diseases. Common symptoms include persistent low-grade fever, skin rash, extreme fatigue, and painful or swollen joints. No single test can be used to diagnose lupus, and it may take several months or years after symptoms first appear for doctors to make a definitive diagnosis. There are blood tests that a doctor can use to help diagnose lupus, but none of these tests are definitive.
The problem with lupus is, people can't tell how sick you really are. One of the major things that happens in lupus is chronic fatigue, and there is no way to measure that. Another symptom is hair loss, called alopecia. In the discoid form of lupus, hair loss will be permanent. When you develop lupus, you make antibodies against self. Your immune system goes doubly wrong when you have lupus because not only are you making antibodies against yourself, but your immune system doesn't work as well against infection. It's very unfair! But that's what lupus is all about antibodies against self.
What are the symptoms of lupus?
The signs of lupus differ from person to person. Some people have just a few symptoms; others have more. Lupus symptoms also tend to come and go. Lupus is a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).
Common signs of lupus are:
- joint pain and stiffness, with or without swelling
- muscle aches and pains
- fever with no known cause
- feeling very tired
- skin rashes
- anemia (uh-NEE-me-uh) (too few red blood cells)
- trouble thinking, memory problems, confusion
- kidney problems with no known cause
- chest pain when taking a deep breath
- butterfly-shaped rash across the nose and cheeks
- sun or light sensitivity
- hair loss
Less common symptoms include:
- blood clots
- purple or pale fingers or toes from cold or stress
- seizures
- sores in the mouth or nose (usually painless)
- severe headache
- dizzy spells
- "seeing things", not able to judge reality
- feeling sad
- strokes
What are flares?
The times when your symptoms worsen and you feel ill are called flares. Flares tend to come and go. You may have swelling and rashes one week and no symptoms at all the next. Even if you take medicine for lupus, you may find that some things trigger your symptoms to flare. You may find that your symptoms flare after you've been out in the sun or after a hard day at work. Common triggers include:
- overwork and not enough rest
- stress
- being out in the sun or close exposure to fluorescent or halogen light
- infection
- injury
- stopping your lupus medicines
- certain medications
Living with lupus can be hard. How can I cope?
Dealing with a long-lasting disease like lupus can be hard on the emotions. Concerns about your health and the effects of your lupus on your work and family life can be stressful. Changes in the way you look and other physical effects of lupus and the medicines used to treat lupus can bring on body image issues and affect self-esteem. Your friends, family, and coworkers might not seem to understand how you feel. At times, you might feel sad or angry. Or, that you have no control over your life with lupus. But there are things you can do that will help you to cope and to keep a good outlook:
-
Pace yourself. People with lupus have limited energy and must manage it wisely. Most women with lupus feel much better when they get enough rest and avoid taking on too much at home and at work. To do this, pay attention to your body. Slow down or stop before you're too tired. Learn to pace yourself. Spread out your work and other activities.
-
Reduce stress. Exercising with your doctor’s okay, finding ways to relax, and staying involved in social activities you enjoy will reduce stress and help you to cope.
-
Get support. Be open about your feelings and needs with family members and close friends. Consider support groups or counseling. They can help you to see that you are not alone. Group members teach one another how to enjoy life with lupus.
-
Talk to your doctor. The symptoms of lupus and some medications can bring on feelings of depression. Don't be afraid to talk to your doctor about these feelings.
-
Learn about lupus. People who are well-informed and involved in their own care have less pain; make fewer visits to the doctor; feel better about themselves; and remain more active.
For more information
For more information on lupus, call the womenshealth.gov Call Center at 1-800-994-9662 or contact the following organizations:
National Heart, Lung, and Blood Institute
Phone number: (301) 592-8573
Internet address: www.nhlbi.nih.gov
National Institute of Arthritis and Musculoskeletal and Skin Diseases
Phone number: (877) 226-4267
Internet address: www.niams.nih.gov
National Institute of Neurological Disorders and Stroke
Phone number: (800) 352-9424
Internet address: www.ninds.nih.gov
National Kidney and Urologic Diseases Information Clearinghouse
Phone number: (800) 891-5390
Internet address: http://kidney.niddk.nih.gov/
National Library of Medicine's MedlinePlus
Internet address: www.nlm.nih.gov/medlineplus/lupus.html
Alliance for Lupus Research
Phone number(s): (212) 218-2840 or (800) 867-1743
Internet address: www.lupusresearch.org/
American Autoimmune Related Diseases Association
Phone number(s): (586) 776-3900 or
(800) 598-4668 Literature Requests
Internet address: www.aarda.org
American College of Rheumatology
Phone number: (404) 633-3777
Internet address: www.rheumatology.org
Arthritis Foundation
Phone number: (800) 283-7800
Internet address: www.arthritis.org
Lupus Foundation of America
Phone number: (800) 558-0121
Internet address: www.lupus.org
S.L.E. Lupus Foundation
Phone numbers: (212) 685-4118, (800) 745-8787
Internet address: www.lupusny.org
