You may have lupus but not really know what’s causing your flare-ups or what symptoms you might get.Understanding what the condition is can help you manage yours better, so let’s go through some simple definitions. 

Lupus is a chronic autoimmune disease (meaning a disease affecting the immune system) that causes inflammation in one or more parts of the body. 

There are 3 different types of lupus in adults: 

1. Systemic lupus erythematosus (SLE) - the most common type, 
2. Cutaneous lupus erythematosus (causes a scaly rash), and 
3. Drug-induced lupus erythematosus

You might also notice that you have some of these common symptoms of lupus: 

• Fatigue
• Pain or stiffness in the joints
• Butterfly rash (butterfly-shaped rash on your face)
• Fever
• Hair loss
• Sores in the mouth 

If you want to learn more about ways to reduce lupus flares, read our previous article here.

Living with lupus is challenging, especially if you’re in school or working as it can flare at any time, making it hard to continue with your daily routine. 

These 7 tips cover lifestyle changes and self-care. They won’t help you cure lupus, but they can help you manage the condition better and improve your quality of life.

1. Taking notes of flare-ups 

Since flares can seem to happen randomly and at any time, you need to track them so that you and your doctor can find a trigger. There’s no better way to do this than by making a flare-up journal. 

Write down your lupus flares symptoms to find a pattern. Note what time it happened, how long the flare lasted for, and what you were doing before and during each flare.

You can follow this simple template:

Females should also track their periods, as hormonal changes could affect lupus symptoms. 

You can find more detailed templates online with categories for types of food, hours of rest, etc. If you prefer a digital format, use diary applications like Google Keep or Google Calendar. 

Some extra tips for keeping your lupus diary:

● Include as much detail as possible 

Your doctor or nurse will use this record to adjust your lupus treatment plan or identify possible environmental triggers such as certain infections or environmental exposure such as UV rays. 

If there is joint pain, which were the joints that hurt or were swollen. Include pictures if possible. When there is rash, pictures of the rash are great records. If there is leg swelling, was the leg swelling throughout the day or comes on at the end of the day after standing. If there was fever, what was the temperature recorded. 

The more detail you provide for them, the better. 

● Establish a routine 

You need to be consistent when keeping a lupus diary. Make it a part of your morning or night routine, like writing your record while having breakfast or just before going to bed.

Or it could be a weekly journal of the lupus symptoms which you have experienced. 

2. Managing daily activities 

Lupus flares are when there are increased symptoms. These periods usually come and go in waves, sometimes few months to few years apart.

Some people with lupus may experience joint pain, hair loss, and rashes which are part of their lupus. Whereas others could experience frothy urine, leg swelling, or chest pain. Everyone could be different.

When you’re having a flare, you need to rest your body. But it’s hard to do this when you need to carry on with life as usual (household chores, work, school, etc.).Here are some tips to help you manage daily life during a flare. 

● Household chores  

When lupus goes into remission (becomes less serious or even disappears), you may feel okay and can perform household chores.  

But when your lupus symptoms worsen, you shouldn’t do all your housework alone. Split chores with someone else so you don’t strain yourself.

For example, you can do lighter and easier housework (e.g. folding clothes, dusting and putting laundry into the washing machine). Take enough breaks and have open communication with your family members if you’re tired or feel pain.

● Ergonomic furniture 

If you spend all day working at a desk, it’s good to invest in an ergonomic (made for efficiency and comfort) work desk and chair. This type of furniture helps you maintain good posture and prevent muscle pain so you feel more comfortable. 

New to ergonomic furniture? Here are some tips to help you buy them:

• Get a chair with adjustable lower back (lumbar) support part, armrests, and a backrest. When seated, your feet should rest flat on the floor.
• Get a desk with adjustable height. Your wrists should be straight and hands at elbow level.
• If you use a laptop, you should get an external monitor, keyboard and mouse.
• Position your monitor about 50 cm away from your face. If you can’t get it to that distance, use a monitor riser or adjustable monitor arm to raise it to a better height.
• If you have to reach for any far away object, do stand up and walk over instead of straining your arms and back. 

● Work 

It can be tough working when you have lupus. Consider letting your boss or HR know about your condition, and try to ask for flexible work schedules and arrangements.  

Office: Ask if you can work from home on days when your symptoms get worse.  

Non-office: You may need to discuss some changes to your workload and work environment with your boss. Looking for someone who understands what you’re going through and how you feel? Consider joining a support group in Singapore where you can exchange practical tips on how to manage your lupus at work with other lupus patients. 

The Lupus Association (Singapore) regularly organises informative events for lupus patients and volunteers. Head over to their social media pages for more information on how to attend. 

● Student 

Most educational and training institutions for children (schools, institutes of higher learning) and adults (vocational schools, special training colleges) have special arrangements for students with medical conditions. 

Tell your teachers, student welfare officers or school counsellors about your condition, so they can help you. 

As for your own workload, manage it well with these tips:

• Don’t overload your study schedule if you can help it. 
• Take frequent breaks when studying or training.
• Ask politely to be allowed to stay in the shade when attending courses that have outdoor fieldwork or on-site training.
• Request extra time for tests if needed.
• Ask your teachers, professors or trainers if it’s possible to attend classes remotely during flare-ups. (or if there are recorded classes online for you to watch)

● Sleep 

Many people with lupus feel more tired during a flare-up. During the flare, you need enough sleep and rest to manage lethargy. These tips can help you to plan your rest:

• Get enough sleep: Adults need at least 7 to 9 hours of sleep a night. Having adequate helps with control of lupus. 
• Don’t nap too much in the day: Napping too much during the day can make it harder to sleep at night, and you might wake up in the morning feeling more tired. If you need to rest during the day, try to nap for 20 minutes or less.  
• Sleep better with a bedtime routine: Try having a warm shower (this could relieve joint stiffness) and listening to ambient music before going to bed. Also avoid using mobile devices up to half hour before your planned bedtime.  

● UV light 

UV light exposure makes lupus symptoms worse, so stay indoor as much as possible to rest. If you really need to go outside (for short trips, like to buy food), put on sunblock with at least SPF 50 on your face, neck, arms and wear a cap. You could also carry an umbrella for sun protection and wear protective clothing with long sleeves.  

These tips could help you manage daily activities with lupus flares. But if you notice unusual or severe symptoms, call your doctor for medical care immediately.

• Chest pain 
• Shortness of breath on walking
• High fever (above 38.5)
• Excessive and unexplained bleeding or bruising
• Coughing out blood 

3. Skin care 

Systemic lupus erythematosus causes a butterfly rash (or malar rash) on the face. Cutaneous lupus erythematosus (another type of lupus) also causes inflamed (red and swollen) skin rashes on the limbs, trunk and face. 

If you have rashes and sores caused by lupus inflammation, you’ll need some skin care to treat it. Your doctor may prescribe you a topical anti-inflammatory cream to put on your face rashes. Apply the cream as instructed.

When there is no flare of the skin rash, one should always apply sunscreen (minimum SPF 50) prior to sun exposure. 

4. Exercise 

Joint pain makes it hard to even start moving, let alone exercise, but you need some physical exercise and movement to manage your condition. Moving may even ease the pain in some cases. 

For example, corticosteroids have side effects like osteoporosis (thin or brittle bone density). You can manage osteoporosis by exercising regularly and taking in adequate calcium and vitamin D supplements.  

These are some benefits of exercise:

• Relieves pain by regulating some of the chemicals involved in inflammation
• Makes your muscles and bones stronger
• Improves heart health
• Increases your range of movement (how flexible you are) 

If you’re worried about worsening pain after exercise, start with low impact exercises like walking, yoga and stretching that can help strengthen your joints and muscles, before trying moderate impact exercises such as jogging, or cycling. 

Always remember to talk to your doctor about your exercise routines to make sure they are suitable for you. You might be seeing a physiotherapist for pain - they can also recommend some routines that are good for your condition..

To avoid sunlight, do your exercising indoors. But if you need some fresh air, it is okay to go out in the early morning, evening or night time. The sun is brightest from 11am to 4pm, thus direct sunlight during this period should be avoided. 

If you are feeling joint stiffness now, try these exercises that you can do on the spot at home:

5. Diet 

Your doctor may give you a diet plan to follow. In general, you should eat a healthy, balanced diet:

• Fruits and vegetables
• Whole grains (wholemeal bread and pasta, brown rice)
• Healthy proteins (lean meat, fish, chicken, beans, eggs, nuts) 

Some other diet adjustments to supplement your nutrition: 

• More calcium and vitamin D: Calcium and vitamin D supplements help to supplement bone health as people with lupus can get affected by osteoporosis (thin or brittle bones).
• Omega-3 fatty acids: Lupus increases the risk of heart disease. Try eating more Omega-3 fatty acids foods like salmon, and a handful of healthy nuts such as walnuts.
• Whole foods: Altered or high cholesterol levels or high blood sugar can happen in people with lupus. To prevent absorbing too much unhealthy fat and sugar, consider eating less processed food.
• Not overeating: Steroids taken for lupus, like prednisone, can cause you to gain weight. Moderate your total calorie intake over a day or a week.

Talk to your doctor or dietician for advice before you change your diet. 

6. Hygiene and vaccinations

● Maintain good personal hygiene  

Your lupus medication might include drugs that modulates and suppresses your immune system. That is important for control of lupus. 

But it also makes you more vulnerable to infection. Why? Your immune system protects your body from infections by fighting off the virus or bacteria, so a suppressed immune system makes you more likely to get sick. 

To guard against infections, wash your hands as often as you need to with soap and water, e.g. before eating, after visiting bathroom or after touching raw food ingredients.

● Go for vaccinations 

Vaccinations can offer protection against certain microbes. People with lupus can consider influenza, pneumococcal and shingles vaccination.Always discuss the suitable timing for vaccination with your rheumatologist.

7. Medication 

● Lupus medications 

Your rheumatologist would have prescribed some medications to control your lupus.It is always best to take the medicine regularly so that you gain control of your lupus.

Some of these drugs include hydroxychloroquine, steroids and other drugs to regulate the immune system. They should be taken as instructed by your rheumatologist so that the dose is just right for you.

Every person with lupus would have their medication adjusted to what they need.

Some types of medication are associated with drug-induced lupus. If you have been prescribed these drugs, it is best to discuss their use with your rheumatologist:

• Hydralazine (used to treat high blood pressure or hypertension),
• Procainamide (used to treat irregular heart rhythms)
• Quinidine (used to treat irregular heart rhythms)

Living with lupus can be achieved with knowledge of lupus and know that there are people who are in this together with you. They are your family, friends, colleagues, rheumatology team or fellow people with lupus.

Be patient and kind with yourself. Have a self-care routine of taking breaks, eating healthily, and doing gentle exercises during a lupus flare.

Also set aside time for your lupus treatment. All the best!