A lupus diagnosis can be very upsetting. At first, it may be a relief to know why you are tired and in pain. You may wonder what happens next. Long term diseases need a lifetime of care.
Lupus will impact your health as well as your lifestyle. It can cause physical and mental health changes. It can also affect your personal relationships. It may be frustrating to feel limits and setbacks. However, there is a lot you can do to manage lupus.
Lupus is marked by periods of no symptoms and then symptom flare-ups. A flare-up can be frustrating. Symptoms vary from person to person. They may include:
- Lasting tiredness, weakness
- Loss of hunger, recurring belly pain, nausea or vomiting
- Unusual headaches, aching all over
- Painful and swollen and stiff joints, swelling of the feet and legs
- Unexplained skin rash, hives, sores on skin and roof of the mouth, and hair loss
- Weight loss without trying
- Problems breathing
Nervous system and mental health problems, such as:
- Problems thinking
- Muscle weakness or pain
- Psychosis—seeing or believing things that are not true
You will likely learn to know when a flare up is coming. You may also learn what triggers them. Common triggers are poor diet, lack of sleep, and stress. Exposure to colds, the flu, or sunlight can also trigger lupus. Keep a journal when flare-ups start. Track the symptoms and triggers. The more you know about flare-ups, the better you can manage them..
Most people with lupus will have joint and muscle pain. At times the pain may limit activities. People with lupus are also more prone to weak bones from osteoporosis.
Keeping physically active can help decrease the strain on joints and muscles. It can also make bones stronger. Consider your current symptoms when developing an activity program. Fortunately, there are many ways to be active. Here are some tips:
Try activities that take pressure of the joints, such as:
- Water activities, such as water aerobics or swimming
- Low-impact devices, such as cushioned treadmills or elliptical machines
- Wear proper footwear.
- Ask your doctor or physical therapist what activities are best for you.
- Begin at a low intensity. Slowly work your way up.
- Take rest periods, as needed.
- Do cardiovascular and strength activities.
Back off of your routine during flare-ups. Work with physical or occupational therapists—if you have problems doing daily tasks.
To keep your skin healthy:
- Wear sunscreen with SPF 30 or higher. It should block UVA and UVB rays. Sunlight is a trigger for lupus flares.
- Limit outdoor activity between 10am to 4pm.
- Choose protective clothing: wide-brimmed hats, long sleeves, UV-protective clothing.
- Do not use tanning beds.
- Use hypoallergenic make-up. Look for makeup that has UV-protection.
Talk to your doctor if rashes and sores bother you.
Anyone with a long-term illness can have bouts of depression. Mental health problems can be caused by lupus itself or lupus medicines. These may include anxiety, mood changes, forgetfulness, and other mental health problems. To cope with mental health concerns:
- Know what signs to look for. Talk to your doctor about them.
- Let your family and friends know about the possible side effects of lupus and your medicines.
- Get plenty of sleep and eat a healthful diet.
- Ask family and friends for help with tasks.
- Find ways to decrease stress. Consider a massage, a good book, or some quiet time.
Talk to Your Doctor
Work with your doctor to manage lupus. Be sure to:
- Learn why the doctor advises certain medicines, treatments, or procedures.
- Ask what signs or symptoms you should be aware of.
- Track your behaviors and symptoms. Share this with your doctor.
- Ask about treatments, studies, or problems you have come across.
See your doctor regularly. Do this even when you are healthy. It may help find problems before they start.
It can be hard to manage lupus at times. Your friends and family may not know how lupus is affecting you. It is important to be honest and open with them.
Find support groups that fit your needs. A lupus support group can provide emotional support and coping success stories.
Work to make changes in line with your goals. Know that future plans may need to be adjusted. The good news is that most people with lupus can lead a full life.
The Arthritis Society
Systemic lupus erythematosus (lupus). National Institute of Arthritis and Musculoskeletal and Skin Diseases website. https://www.niams.nih.gov/health-topics/lupus. Accessed October 28, 2021.
Systemic lupus erythematosus (SLE). EBSCO DynaMed website. Available at: https://www.dynamed.com/condition/systemic-lupus-erythematosus-sle-in-adults . Accessed October 28, 2021.
The dos and don'ts of living well with lupus. Lupus Foundation of America website. Available at: https://www.lupus.org/resources/dos-and-donts-for-living-well-with-lupus. Accessed October 28, 2021.
Last reviewed October 2021 by EBSCO Medical Review Board Last Updated: 10/28/2021