Living with lupus: a guide
If you’ve been diagnosed with lupus, you may need to make some changes to your daily routine to help manage your symptoms. Living with lupus can be difficult, and it’s normal to feel overwhelmed — especially at first.
The good news is there’s a lot you can do to stay on top of your health and manage your symptoms. Start by learning steps you can take to develop healthy habits.
Make your treatment plan work for you
One of the most important tools you have to manage lupus is yourself — your effort, your attention, and your awareness of your body.
- Follow instructions from your treatment team
- Take your medicines as prescribed
- Keep a medical diary to record your symptoms, medicines, and side effects
- Talk with your doctors about your questions and concerns — especially if you’re having side effects or don’t understand the directions (here’s a list of questions to get you started)
- Pay attention to how you feel, and share what you notice with your doctors
- Tell your treatment team right away if your symptoms change or get worse
Learn more about managing your treatment plan.
Eat healthy and be physically active
Healthy living is good for everyone — but for people with lupus, it’s especially important. Good nutrition and physical activity can help you feel better.
Use these tips to help you eat healthy and be active:
- Eat lots of fruits, vegetables, and whole grains
- Choose healthy protein foods — like lean meats, poultry, and seafood
- For bone health, eat foods with lots of calcium — like spinach and dairy
- For heart health, eat foods with Omega-3 fatty acids — like salmon and walnuts
- Try walking, swimming, or biking — these low-impact activities help your bones and muscles without hurting your joints
- Try gentle yoga to relieve stress and loosen tight muscles — ask your treatment team what kind of yoga is best for you
Always check with your doctors before taking any herbs, vitamins, or dietary supplements — they can affect the medicines used to treat lupus or make your condition worse.
Smoking can trigger lupus symptoms and make them worse. If you smoke, make a plan to quit.
Explore resources on exercise and nutrition.
Most people with lupus have fatigue (feel tired often).
Try these tips to beat fatigue:
- Get enough sleep — aim for at least 7 hours each night
- Take breaks during the day to rest and recover — there’s no shame in needing a nap
- Make changes to your daily routine when you need to
Explore ways to manage fatigue.
For many people with lupus, stress can trigger your symptoms — or make them worse.
Use these tips to manage everyday stress:
- Plan ahead for how you’re going to use your time — decide what’s most important and do that task first
- Ask for help when you need it
- Make time for fun, relaxing activities
- Try not to sweat it if you don’t get everything done or have to cancel plans — remember, your health comes first
Manage lupus fog
Many people with lupus have “lupus fog” (feelings of confusion and memory loss).
Try these ideas to clear the fog:
- Focus on 1 task at a time
- When someone tells you their name or an important piece of information, try repeating it out loud and writing it down
- Before a doctor's appointment, write down your questions — and bring your medical diary so you can tell the doctor about your symptoms and side effects
- Keep a calendar to record appointments and reminders
Learn more about managing lupus fog.
Most people with lupus have joint pain, muscle pain, or headaches. Always check with your doctors before trying new ways to manage your pain.
Here are some ideas to try:
- Use heat or cold packs
- Talk with your treatment team about taking over-the-counter pain medicines
- Try relaxation techniques — like meditation, breathing exercises, or gentle yoga
- Consider trying healing techniques — ask your treatment team about acupuncture, acupressure, or biofeedback
Explore ways to manage pain.
Protect yourself from infections
Use these tips to protect yourself:
- Wash your hands often
- Clean and protect any cuts or wounds
- Avoid people with colds or other illnesses you could catch
- Talk with your doctors about taking antibiotics before procedures
- Tell a doctor right away if a cut becomes red, painful, or swollen
- Tell a doctor right away if you have a fever over 100 °F
If you have lupus, it’s a good idea to get certain vaccines — but you may not be able to get others. Always check with your doctors before you get vaccines or allergy shots.
Learn more about vaccines and lupus.
Protect yourself from ultraviolet (UV) light
Most people with lupus are sensitive to UV light — and it can trigger lupus symptoms.
Follow these tips to stay protected:
- Use sunscreen with SPF 30 or higher that blocks both UVA and UVB rays
- Wear long sleeves, pants, and wide-brimmed hats made of fabrics that protect you from the sun
- Plan outdoor activities for early in the morning or later in the evening
People with lupus can be sensitive to indoor lighting, too. If indoor light bothers you, try putting light shields over fluorescent bulbs. You can also buy light bulbs that send out low amounts of UV radiation, like LED lights.
Learn ways to protect yourself from UV light.
Get help living with lupus
Don’t be afraid to get professional help if lupus interferes with your life.
Here are some types of professionals who can help with the physical symptoms of lupus:
- Cognitive therapists can help with lupus fog
- Occupational therapists can make your work space and tasks more manageable
- Physical therapists can help with joint problems and improve your strength
You may need to make some changes in your life because of lupus. But you can learn to live with your symptoms — and keep doing the things you want to do.