Coping With Lupus

Lupus is dominated by periods of illness and wellness—flares when your symptoms are active, and remission when your symptoms subside. Establishing healthy lifestyle habits while you're feeling your best can help you cope with life with lupus and may even help you combat the effects of flares when they arise, making such strategies an important part of the overall management of your disease.

Remember, though, that lupus tends to affect those who have it in different ways, so the lifestyle changes that will help you most are highly personal. In addition, it may take some time before your investments yield helpful rewards.

As you travel this new path, consider these suggestions, and keep in mind reminders about the importance of following your set treatment plan.

Emotional

Lupus can take an emotional toll at times, especially when you're dealing with symptoms that may limit or prevent you from doing what you normally do. You may also find it difficult to explain your disease to others. This is all completely normal and will likely get easier with time. These suggestions can help.

Take Time for Yourself

Make sure you have time to do things you enjoy. This is essential for your mental health and wellbeing, both to keep stress at bay and to give yourself time to relax, unwind, and take the focus off of your illness.

Make Adjustments Where Needed

Remember, many people with lupus can continue to work or go to school, though you will probably have to make some adjustments. This could include anything from scaling back on the hours you work to keeping communication open with your teachers or professors to actually changing your job. You need to do what's best for you to accommodate your health.

Manage Your Stress

Emotional stress is believed to be a lupus trigger, so managing and reducing stress is a must. Stress also has a direct effect on pain, often increasing its intensity. Do your best to manage those areas of your life that cause the most stress.

Additionally, consider relaxation techniques and deep breathing exercises as tools to help bring you calm. Exercise and making time for yourself are other ways to control and reduce stress.

Watch for Brain Fog

Lupus fog, also known as brain fog, is a common lupus experience and includes a variety of memory and thinking problems, like forgetfulness, misplacing things, trouble thinking clearly concentration problems, or trouble coming up with words that are right on the tip of your tongue.

When you first experience lupus fog, it can be scary and you may be afraid that you're experiencing dementia. Lupus fog is not dementia and unlike dementia, lupus fog doesn't get progressively worse over time. Like other lupus symptoms, lupus fog tends to come and go.

Lupus fog is not only a cognitive experience—it can be an emotional one, too. Since it impacts your ability to think, remember, and concentrate, brain fog can interfere with many parts of your life, sometimes even challenging the very core of your identity. Grief, sadness, and frustration are not only understandable but common.

As you navigate this, turn to practical steps to help manage the symptoms:

• Write down your lupus fog symptoms as soon as you notice them, including what you were doing, what happened, and the date. Take your notes to your next healthcare provider's appointment.
• Write everything down (appointments, events, names, conversation details) on sticky notes, a calendar, a planner, a journal, or whatever it takes to help you remember the things you need to. Make sure you always have something to write on with you in case you remember something important. This will get easier the more you remember to do it.
• Use reminder, calendar, and notes features on your smartphone, or try related apps. Take pictures of things you need to remember. Send yourself texts or emails as reminders. Set alarms for your medications.
• Write down questions you have for your healthcare provider right away as you think of them. Add to the list as needed and take it with you to your next appointment.
• Be kind to yourself. Lupus fog isn't your fault and you'll learn ways to cope with it. When you feel frustrated, take a deep breath—and don't be afraid to laugh.

Physical

There are many ways to cope with the physical symptoms of lupus, including diet, exercise, medications, sun protection, and getting enough rest.

Moderate Your Diet

One common misconception you may have is that there are “good” and “bad” foods and that the inclusion or exclusion of those items in a lupus diet will either exacerbate or alleviate your lupus symptoms. That's usually not the case.

As with any diet, moderation is a key factor. A slice of rich cheese, for example, won’t trigger a flare or inflammation, but a diet filled with rich cheeses may.

When you have lupus, conditions related to your lupus may cause specific symptoms that could be tied to diet.

On the other hand, certain diet restrictions may be recommended depending on specific symptoms or conditions related to lupus. Here are some examples:

• Weight loss/no appetite: A loss of appetite is common when you're newly diagnosed and it's often chalked up to the illness, your body adjusting to new medications or both. Consulting your healthcare provider to discuss adjustments to your diet may alleviate those concerns. Eating smaller meals more frequently can also be helpful.
• Weight gain: It's common for people to gain weight with the use of corticosteroids like prednisone. It's important to talk to your rheumatologist to make sure you're on the lowest dose possible while still controlling your symptoms. Beginning an exercise program can be very helpful and may help with more than just weight control. Short-term nutritional counseling has also been shown to help.
• Medications: Your medication can cause a number of issues, from heartburn to painful mouth ulcers, which can affect how you eat. Speaking with your healthcare provider will determine if adjustments in your medication or dosage are necessary. In some instances, anesthetics for use in your mouth (similar to those used for babies who are teething) can decrease the pain of mouth ulcers.
• Osteoporosis: Osteoporosis is a condition in which your body’s bones lose density and, thus, break easily. Although this condition often affects older, postmenopausal women, it can also affect anyone who takes corticosteroids for a period of time. In fact, some studies have shown that bone loss can occur within just a week of taking steroids. It's important to get enough vitamin D and have your blood levels monitored; you may need to take a calcium supplement as well.
• Kidney disease: If you are diagnosed with kidney disease as a result of your lupus (lupus nephritis), your healthcare provider may suggest a special diet—potentially one low in sodium, potassium, or protein—along with standard treatment options. The spice turmeric (curcumin) appears to have a protective effect against lupus nephritis, at least in mice.
• Cardiovascular disease: Lupus can cause cardiovascular complications, including atherosclerosis (hardening of the arteries,) lupus myocarditis, and high blood pressure. A low-fat diet can aid in managing atherosclerosis.

Take Your Medication as Prescribed

Your medications play a significant role in how your disease progresses and how often flares occur. It may be difficult to remember to take them when you're supposed to, especially if you're not used to taking medicine.

Here are some suggestions to help you remember to take your medications:

• Take your medications at the same time every day, coinciding with something else you do regularly, like brushing your teeth.
• Keep a chart or calendar to record and schedule when you take your medications. Use colored pens to track more than one type of medication.
• Use a pillbox.
• Use e-mail and/or phone reminders to alert you to take your medication.
• Remember to refill your prescriptions. Make a note on your calendar to order and pick up the next refill one week before your medicine runs out. Or, register for automatic refills and/or text reminders if your pharmacy offers them. 

Check With Your Healthcare Provider Before Taking Any New Medication

Often, one of the more unexpected flare triggers is medication. What seems to be of help could actually be of harm, so always check with your healthcare provider before taking a new drug and before stopping any you're already on, both over-the-counter and prescribed. Also, make sure you tell any nurse or practitioner you’re unfamiliar with that you have lupus so they are aware when prescribing medications.

Routine immunizations, like those for the flu and pneumonia, are an important part of maintaining your health, but you should make sure your healthcare provider approves before getting the shots.

Keep Your Healthcare Provider's Appointments

Even if you feel fine, keep your healthcare provider's appointments. There’s a simple reason for doing this—to keep the lines of communication open and to catch any potential illness or complication in its earliest stages.

Here are some ways to help you make the most of your time with your practitioner:

• Make a list of questions, symptoms, and concerns.
• Have a friend or family member come with you to help you remember symptoms or to act as your patient advocate.
• Use the time to find out who in your medical professional's office can assist you and the best times to call.
• Review your treatment plan and ask how the plan will help you improve your health. Find out what might happen if you don't follow the treatment plan.
• Review progress on your treatment plan.
• If there are aspects of your treatment plan that seem to not work, share your concerns with your healthcare provider.

Lupus Healthcare Provider Discussion Guide

Get our printable guide for your next healthcare provider's appointment to help you ask the right questions.

Download PDF

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Keep Exercising

Exercise is important in terms of good health, but it can also help you maintain joint mobility, flexibility, and strong muscles since lupus often attacks these areas of the body. It also helps relieve stress, another flare trigger.

Listen to Your Joints

Any activity that gives rise to pain could be a deal breaker for you and your disease. Alternate activities and use assistance devices (like jar openers) to relieve some of your joint stress.

Limit Your Exposure to Sunlight

When you have lupus, you most likely have photosensitivity, which means that sunlight and other UV light can trigger your rashes. UV light is thought to cause skin cells to express particular proteins on their surface, attracting antibodies. The antibodies, in turn, attract white blood cells, which attack skin cells and lead to inflammation.

Apoptosis, or cell death, normally occurs at this point, but it's amplified in lupus patients, which only further increases inflammation.

Reduce Your Risk of Infections

Since lupus is an autoimmune disease, your risk of getting infections is greater. Having an infection increases your chance of developing a flare.

Here are some simple tips to help reduce your risk of getting an infection:

• Take care of yourself: Eat a balanced diet, exercise regularly, and get plenty of rest.
• Consider your risk for infection based on where you spend your time.
• To avoid infection from your pet, make sure your pet is up-to-date on all shots and vaccinations to prevent disease. And always wash your hands after touching your pet, especially before you eat.
• Avoid eating raw or undercooked eggs.
• Wash fruits and vegetables carefully before you eat them.
• Wash your hands, cutting boards, counters, and knives with soap and water.

Recognize Flare Warning Signs

Get in tune with your disease. If you can tell when a flare is about to occur, you and your healthcare provider can take steps to control the flare before it gets too far along. Make sure you contact your practitioner when you recognize a flare coming on.

Don't Smoke

Smoking can make the effects lupus has on your heart and blood vessels even worse. It can also lead to heart disease. If you smoke, do your best to quit for the sake of your overall health.

Use Skin and Scalp Preparations Cautiously

Be wary of skin and scalp preparations such as creams, ointments, salves, lotions, or shampoos. Check that you do not have a sensitivity to the item by first trying it on your forearm or the back of your ear. If redness, rash, itching, or pain develops, don't use the product.

Social

Getting support, whether it's from an online support group, a community group, or a therapist, can be extremely helpful in navigating the emotional waters of lupus.

Individual counseling can help you express your feelings and work on ways to manage your emotions. If lupus is causing conflict or stress in your relationship, consider couples counseling.

Educate Others

Educating your loved ones about your disease will help them understand what to expect and how they can support you, especially when you're having a flare. This is especially important because lupus has so many different symptoms that come and go.

Reach Out

Once you're diagnosed with lupus, try to find others who have been too, whether it's online, in a face-to-face support group, or at a lupus educational event. Regular contact with people who are experiencing similar symptoms and feelings can help.

Since the majority of people with lupus are females in their childbearing years, a healthcare provider may have had a hard time diagnosing lupus in men. This can increase feelings of isolation.

Practical

It might seem obvious that the most important tool for managing lupus is to get consistent medical care. For some, however, that is easier said than done. If you live in a major city, it will be easier to find a good rheumatologist who has experience treating lupus than if you live in a rural area. Some people have to drive hours, or even fly, to their nearest specialist.

Not having health insurance is another reason some people don't get the medical care they need. For people newly diagnosed, not knowing how to find a good rheumatologist is also a barrier. Going without medical care for lupus is risky. The good news is that if you are in this situation, there is something you can do about it.

Meet With a Certified Insurance Agent or Certified Enroller

Many people without insurance are uninsured through no fault of their own—like not being able to afford monthly premiums or losing coverage. If you are uninsured, find out what you're eligible for. You might qualify for Medicaid (free, government-paid insurance) or for a plan made possible through the Affordable Care Act (also known as Obamacare).

Unlike Medicaid, Obamacare requires a monthly payment and the insurance is provided by a private company. The government, however, will offer some payment assistance, if you're eligible.

They are often employees of local social services organizations and can work with you in-person to figure out how to get you insured. They will never ask you to pay for their services.

Choose the Right Health Plan

When choosing a health plan, there are important things to consider because you have lupus. You will be given plan options that provide different levels of coverage. Someone who rarely goes to the healthcare provider except for annual checkups will need a different plan than someone with a chronic illness who sees a few specialists every month.

It's important to consider your medical needs and how much you will have to pay out-of-pocket for each health plan option. Think about added medical costs like deductibles, co-payments, co-insurance, whether your medications and medical devices are covered, and so on.

Plans with higher premiums might end up costing less overall if their out-of-pocket expenses are significantly lower. Work with your certified enroller or insurance agent to do the math and figure out the costs and benefits of each plan.

Contact a Lupus Organization

If you don't have insurance or are newly diagnosed and need to see a lupus healthcare provider, your local lupus organization might be able to help. These organizations can provide information about free or low-cost rheumatology clinics, community clinics, or health centers near you.

If you see a practitioner at a community clinic or health center, he or she might be an internist and not a rheumatologist. In this case, bring information about lupus and treating lupus with you. The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has helpful resources.

If you're insured and simply need some provider suggestions, a lupus organization can also recommend good rheumatologists with private practices in your area who are familiar with lupus. If the lupus organization runs support groups, members are great resources for this information, too.

Other Healthcare Options

Try a public, non-profit, or university hospital. They often have significant sliding scale (reduced fees) options for people who are uninsured. Ask about charity care or financial aid at any hospital. If you don't ask, they might not come out and tell you about any special programs that offer financial help.

If you are a freelancer, try the Freelancers Union. The Actors Fund has helpful resources for obtaining health insurance, especially if you are a performing artist or work in the entertainment industry.

If you lose your insurance but have a rheumatologist, let them know your situation. He or she might be able to help you by reducing your bill or referring you to a low-cost clinic where they also practice.