“It's important to note what may lead to a flare in your lupus,” explains Dr. Costenbader. “Some people have photosensitivity, which means after they've been in the sun, they'll have a flare of the disease with worse symptoms and disease activity.
Clinical psychologist Francine Rosenberg's advice is to learn as much as you can about the disease, “so you can really understand what the person is going through.” When you offer to help, be specific. “Let me bring you dinner tonight” is more likely to get accepted than “Let me do something for you,” she says.
It is vital that people living with SLE practice these habits along with getting 7-9 hours of sleep (a little more for children) in order to prevent lupus flares, limit fatigue, and keep the body's mechanisms healthy, especially the immune system.
However, the majority of people with lupus can expect a normal or near-normal life expectancy. Research has shown that many people with a lupus diagnosis have been living with the disease for up to 40 years.
Lupus can cause serious kidney damage, and kidney failure is one of the leading causes of death among people with lupus. Brain and central nervous system. If your brain is affected by lupus, you may experience headaches, dizziness, behavior changes, vision problems, and even strokes or seizures.
Sunlight, stress, smoking, certain medicines, and viruses may trigger symptoms in people who are most likely to get lupus due to their genes. Hormones such as estrogen. Lupus is more common in women during their childbearing years when estrogen levels are highest. Problems with the immune system.
Stress, joint pain, and fatigue are common lupus symptoms. While rest is essential, moving your body regularly releases “feel good” hormones called endorphins. This can boost your mood and keep your stressors in check. Physical exercise can also lessen joint pain and prevent stiffness in the body.
The sun is the main source of ultraviolet light and is enemy no. 1 for patients with lupus, because it can trigger the disease or trigger flares at any time in its development.
Kidneys About one half of people with lupus experience kidney involvement, and the kidney has become the most extensively studied organ affected by lupus. Lungs About 50% of people with SLE will experience lung involvement during the course of their disease.
Lupus is considered the “invisible disease.” Someone, whose symptoms are not as severe, may appear as if everything is fine, when in all actuality, the individual is fighting symptoms such as: chronic fatigue, joint aches, pains, and swelling.
Foods to avoid include grains, legumes, dairy, processed foods, refined sugars, industrial seed oils, eggs, nuts, seeds, nightshade vegetables, gum, alternative sweeteners, emulsifiers, and food thickeners, said Romano.
Whole-body symptoms — Most people with lupus experience fatigue, fever, and weight changes at some point in their illness. Fatigue — Fatigue is the most common symptom of lupus and can be debilitating.
Make It Easy for Others to Understand
Start by explaining that “lupus is a disease where the immune system makes a mistake,” says Dr. Petri. “Instead of fighting infection the way it should, the immune system starts to attack normal tissues in the body.”
Having lupus can make everyday life challenging. When your lupus is active, symptoms like joint stiffness, pain, fatigue, confusion, or depression can make simple tasks difficult — and sometimes impossible. Since these symptoms aren't visible, the people around you may have trouble understanding how you feel.
Mood swings and personality changes.
People with lupus may experience unpredictable changes in moods and personality traits. This can include feelings of anger and irritability.
Since lupus affects so many parts of the body, in so many different ways, everyone's situation is different. Some people with systemic lupus can work for years with few issues. But others need some type of accommodation, such as flexible work hours or more frequent breaks.