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Patient Support

Our Patient Support program offers peer groups, one-on-one guidance, and resource navigation so you don’t have to face lupus alone. Connect with people who understand and get practical help for daily life.

Managing Lupus Symptoms

Resources to help you develop health habits, stay on top of your health, and manage your symptoms.

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Strategies for Managing Fatigue

Many people with lupus experience fatigue, or feeling tired throughout the day. For some people, fatigue can make it hard to do everyday activities like taking a shower, cooking dinner, or going to work. 

 

The good news is there are steps you can take to feel better. By understanding and working with your body’s limits, you can learn to live well with lupus fatigue.

 

Talk to your doctor

Talk to your doctor about how fatigue affects your daily life. Your doctor may do some diagnostic tests (like blood tests) to make sure your fatigue isn’t caused by another condition, like a thyroid problem or low levels of iron in your blood (anemia). Ask your doctor for advice and resources on how to deal with lupus fatigue. 

 

Before going to your appointment with a close friend or family member, check to see if it’s permitted for them to accompany you.  If it’s permitted, they can help you talk to the doctor about your symptoms and remember details you may have missed. If they cannot come along, see if it’s possible to video chat with them while you’re in the room with the doctor. 

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Plan ahead 

Choose the activities that are most important to you and plan your day around them. That way, you can get the most important things done and make time to rest when you need to. When making your to-do list, decide which tasks are most important and tackle them first. 

 

Plan time to rest throughout the day. 

Shop online when you can. When you need to run errands, try to get everything done in one trip and plan time to rest afterward. If possible, choose the option to pick up your items, in store or a drive-up location, to skip walking around the store and potentially waiting in long lines. 

 

Plan and prepare meals ahead of time when you can. For example, you can cook extra portions of a soup or casserole and freeze them for later. Choose the social activities that are most important to you and feel free to say “no” to the rest. It can be frustrating to feel like you can’t do as many things as you want because of your lupus fatigue. Remember that having lupus isn’t your fault — and that you’ll feel better in the long run if you put your health first. 

Connect with others who can help

Don’t be afraid to ask your family and friends for help with tasks like cooking, shopping, or household chores. Accepting help gets easier with time and practice — and you may find that it makes your relationships even stronger. 

 

You can also join a support group to meet other people with lupus, share your experiences, and get advice from others who’ve been there. Find a lupus support group near you.

 

Build healthy habits

Making these changes to your daily routine can make a big difference in how you feel.

Exercise for a few minutes every day. Low-impact activities like yoga, swimming, and cycling are good for people with lupus because they are easy on your muscles and joints. Learn more about how exercise can help you manage lupus symptoms.

 

Get plenty of sleep. Try these tips to improve your sleep.

 

Eat healthy foods. Hear from a registered dietician on how to eat well with lupus.

If you smoke, ask your doctor for advice to help you quit. 

Understanding Lupus Environmental Triggers

Lupus is a chronic (long-term) disease that can cause inflammation and pain in any part of your body. It’s an autoimmune disease, which means that your immune system — the body system that usually fights infections — attacks healthy tissue instead.

Experts are still working to understand exactly what causes lupus.  Most experts believe that several factors work together to cause lupus, including a person’s genes, their hormones, and contact with environmental triggers. 

Environmental triggers are things in a person’s surroundings (like where they live or work), habits they have, or even certain events they experience. In addition to being a factor that can cause lupus, experts believe that environmental triggers can also make people with lupus more likely to experience a lupus flare. Lupus flares are periods when a person’s symptoms get worse.

 

Types of environmental triggers

Experts are studying the role that a person’s surroundings, habits, and life events may play in lupus. This means that for some triggers, there’s plenty of scientific evidence to show a connection to lupus. But for others, scientists are still gathering scientific evidence to see if there’s a strong connection to lupus. 

 

These are environmental triggers that very likely play a role in triggering lupus  — there’s strong evidence to connect them to lupus:

  • Air pollution
  • Ultraviolet (UV) light
  • Silica dust
  • Smoking cigarettes
  • Taking birth control pills or hormone replacement therapy
  • Infections — for example, with the Epstein-Barr virus
  • Taking certain medications
  • Emotional strain or stress, including post-traumatic stress disorder
  • Sleep deprivation
  • Obesity
  • Contact with certain types of toxins (like pesticides)
  • Contact with heavy metals (like lead and cadmium)
  • Eating ultra-processed foods

 

Remember, environmental triggers are just one factor that may cause a person to develop lupus — experts believe genes also play a role. That means that some people may come into contact with these environmental triggers, but never develop lupus. And not everyone with lupus has the same triggers — what causes lupus to develop or flare up for one person might not affect another person. 

 

If you develop lupus, know that it’s not your fault. It’s not realistic to avoid all possible environmental triggers for lupus. And some triggers, like getting an infection or being exposed to UV light, are outside of our control. But being aware of which environmental triggers may have caused lupus to develop can help you understand how to protect your health and manage the condition. 

 

Identify your triggers by tracking symptoms

If you have lupus, keeping symptom log is one of the best things you can do to help you identify your specific triggers. Use a notebook, your phone, or this symptom checklist to keep track of all of your lupus symptoms. Write down:

  • When the symptom started
  • How long the symptom lasts
  • How much the symptom bothers you

 

Then, write down information about what you were doing or how you were feeling around when the symptoms started. Include things like:

  • Any contact with a known or possible lupus environmental trigger (like sunlight, cigarettes, or pesticides)
  • Your mood, especially if you were feeling stressed
  • If you were feeling sick or had an injury
  • What you ate and drank, including any medicines you took

 

Share your symptom log with your doctor. They can review it with you and help you look for patterns. For example, if your lupus symptoms usually get worse after being out in the sun, UV light may be a trigger for you.

 

Avoid known triggers to prevent flares

Once you know what your triggers are, avoiding them can help you prevent lupus flares and keep your symptoms under control.

It’s not always possible to avoid lupus triggers. For example, you might not always be able to prevent stress or injury, or you may need to continue taking a medicine that triggers lupus, or you may have to have contact with a lupus trigger because of your work. But if you are able to, taking steps to avoid your triggers can help you protect your health and manage your condition.

 

Steps you can take to avoid your lupus triggers include:

Making lifestyle changes. For example, if you smoke cigarettes, try to quit smoking.  Other healthy habits—like sleeping well, exercising regularly, taking vitamin D, and maintaining a healthy weight—are also important lifestyle measures that have been shown to reduce the risk of developing lupus.

Limit your contact with your triggers. For example, if UV light is a trigger, wear sunscreen and protective clothing when outside and remove any fluorescent lights from your home.

 

Changing jobs, if you can. While it’s not always easy or possible, if your job involves contact with triggers like heavy metals, pesticides, or silica dust or causes you a lot of stress, finding a different job might help you better manage lupus. Working closely with your doctor. They can help you come up with strategies to avoid your triggers, such as finding ways to manage stress or changing the medicines you take. And they can also help you make a plan for dealing with lupus flares when they do happen.