Learning to live with the constant fatigue and chronic pain that is associated with lupus is highly likely to take its toll on your mind and body, often leading to frustration and hopelessness. So, we have put together some useful tips for coping with lupus.
There are four different types of lupus: neonatal, cutaneous, drug-induced, and systemic, which accounts for 70 percent of all lupus cases.
A major tissue or organ in the body — such as the heart, brain, kidneys, and lungs — will be affected in half of all systemic lupus cases.
Approximately 10–15 percent of people with lupus may die prematurely due to lupus complications. However, most people can expect to live a "normal lifespan" due to the improvements in diagnosis and disease management that are available.
Coping with lupus can be challenging due to the number of areas of the body that are affected by the disease. People with lupus frequently cite pain, lifestyle changes, and the emotional problems that result from the disease as the most difficult elements of living with lupus.
Here are Medical News Today's smart steps to help improve your quality of life while living with lupus.
1. Get regular exercise
There are three main reasons why you should begin an exercise program and stick with it when you have lupus.
- Exercise keeps you moving and delays, or even prevents, disability and losing your independence.
- Exercise reduces fatigue.
- Exercise boosts your mood by releasing chemicals called endorphins. Endorphins interact with brain receptors that reduce sensitivity to pain and also lower rates of depression.
Always speak to a healthcare professional before beginning an exercise plan; they can evaluate your strength, balance, and flexibility and tailor an exercise program to meet your needs.
A well-balanced exercise program should work your upper and lower muscles as well as your core muscles and include between four and eight different exercises that can be rotated through.
Even if you are only doing light exercise such as stretching, you should still try to do some form of physical activity every day. Sometimes it can be a struggle to stay motivated when in pain, but the more you move, the better you will feel. Stay motivated with the following tips.
• Find inspiration. Think about what inspires you to exercise, such as retaining your independence, and focus on that thought when you feel unmotivated.
• Set achievable goals. Set yourself small, reachable goals. The more you reach your goals, the harder you will want to push yourself.
• Keep a progress journal. Whether you log your progress on an app, a calendar, or a piece of paper, marking your progress will encourage you to stay on track.
Low-impact physical activity is beneficial for people with lupus. Try walking, cycling, and swimming to reduce muscle stiffness, improve muscular strength, relieve stress, promote sleep, and prevent osteoporosis. Exercise will also protect your heart and cardiovascular system.
2. Maintain a healthful diet
While there is no specific diet for lupus, it is important to try to maintain a well-balanced and varied diet that includes plenty of fruits, vegetables, and whole grains, and a moderate amount of meats, poultry, and fish.
Eat foods rich in omega-3
A higher intake of omega-3 fatty acids has been linked to better sleep quality and a reduction in depressive symptoms in people with lupus. Omega-3 fatty acids are found in fatty fish, nuts, and seeds and have an anti-inflammatory effect on the body.
Omega-6, however, is suspected to act as a pro-inflammatory and might contribute to chronic diseases.
Take a vitamin D supplement
One study indicated that low levels of vitamin D in lupus are associated with a higher risk of end-stage renal disease.
Although people with lupus need to limit sun exposure, supplementing with vitamin D is a safe and effective way to ensure you get the recommended dose.
People with lupus are advised to avoid alfalfa. Alfalfa tablets have been linked to lupus flares that may result in fatigue, muscle pain, changes to immune system function, and kidney issues.
Alfalfa sprouts contain an amino acid, known as L-canavanine, that stimulates the immune system in those with lupus and increases inflammation.
Although drinking a moderate amount of alcohol is not a problem in itself for individuals with lupus, it can reduce the effectiveness of certain medications.
Non-steroidal anti-inflammatory drugs — such as aspirin, ibuprofen, celecoxib, and naproxen — are associated with ulcers and bleeding, for example. The risk of developing ulcers or experiencing internal bleeding significantly increases with alcohol use.
Drinking alcohol also decreases the effectiveness of anticoagulants, such as warfarin, and methotrexate, which is a chemotherapy drug.
Reduce fat and salt intake
Corticosteroids might be prescribed to reduce inflammation. Corticosteroids mimic hormones that are released by the adrenal glands — specifically cortisol, which helps to regulate the immune system and quickly reduces the pain, tenderness, swelling, and warmth connected with inflammation.
Side effects of corticosteroid use include the elevation of blood pressure, cholesterol, and lipid levels. Consuming too much fat and salt can also contribute to these conditions, so it is advised that you limit them in your diet.
Watch your weight
Try to maintain a healthy body mass index (BMI) with a healthful, balanced diet and regular physical activity to prevent depression in lupus.
What is more, alcohol use may result in new health issues or exacerbate existing problems.
3. Limit sun exposure
Photosensitivity is common among those with lupus, and excessive sun exposure can trigger lupus flares. Sensitivity to UV rays can cause rashes, fatigue, joint pain, fever, and other symptoms in those with cutaneous and systemic lupus.
Protect yourself from lupus flare-ups caused by sun exposure by:
- using a sunscreen with a broad spectrum SPF
- liberally appling a sunblock of at least SPF 30 if you are outside for extended periods, and making sure it blocks both UVA and UVB rays
- protecting your lips with a wax-based lip balm that is at least SPF 15
- wearing sun protective clothing
- wearing a wide-brimmed hat and wrap-around sunglasses
- avoiding direct sunlight between the hours of 10 a.m. and 4 p.m.
- limiting time spent at higher altitudes or around snow and water
- using UV-protective film to cover house and car windows
Making a few alterations to limit your exposure to sunlight can make the world of difference in preventing flare-ups.
Also, when assessing your work or home environment, keep in mind that indoor lighting can also give off UV rays.
4. Remain stress-free
Although it may be easier said than done, try to avoid becoming stressed and anxious. Stress has a considerable effect on the immune system. Many people with lupus notice that in times of high stress, their symptoms worsen and may lead to a flare.
Stressful situations are sometimes unavoidable, but learning how to destress could help you to deal with moments of tension more effectively.
Soothe stress with mindfulness meditation. Mindfulness meditation teaches you to focus your attention in the present and accept the world the way it is. Not only can mindfulness meditation help create a sense of calm, but it may also decrease pain intensity, according to research.
Breathe deeply. Breathe in through your nose and feel your breath start in your abdomen and work its way upward, to the top of your head. As you exhale through your mouth, reverse this process. Repeat for 5 minutes.
Communicate. Sharing your experiences and how you feel with others will lighten the load and help you to feel less stressed.
Laugh. Finding something to smile about, whether it be watching your favorite show or talking to a friend who makes you laugh, can help to release endorphins and improve your mood.
Move. You do not have to go running to destress; light activity such as yoga, tai chi, and Pilates can help tension to melt away as well as improve your muscle strength.
5. Get enough rest
Not getting enough quality sleep can increase inflammation in the body. For people with lupus, the extra inflammation can exacerbate symptoms of pain, depressed mood, fatigue, and an inability to concentrate properly. Fatigue affects around 80 percent of people with lupus.
The following steps can help you to achieve the recommended 7–9 hours of sleep you require each night:
- Do not use any device that emits blue light — including computers, tablets, televisions, and smartphones — 30 minutes before bedtime.
- Make sure your room temperature is slightly cool and that the room is dark — use blackout curtains if necessary.
- Use a white noise machine to block out external sounds.
- Ensure you have a comfortable mattress, pillow, and bedding.
- If you are unable to sleep within 15 minutes of going to bed, get back up and sit in a dimly lit room until you are ready to try again.
- Stay consistent with the times you go to sleep and get up — even on weekends and holidays.
Exercise daily. Exercise in the morning and have at least 5–6 hours of downtime before bedtime to promote quality sleep.
Manage pain. Ensure that your pain is managed so that you are relaxed enough to fall asleep. Perhaps take a warm bath before bed, or ask your partner or family member for a massage to relieve pain.
Limit naps. Limit naps in the day to 30–60 minutes to avoid them interfering with your body's sleep-wake cycle.
Be mindful of your eating patterns. Never go to bed hungry, but it is advisable to stop eating and drinking around 1–2 hours before you go to bed.
Limit caffeine intake. Caffeine stays in your system for around 6 hours, so avoid beverages and foods that contain caffeine after 3 p.m.
Avoid alcohol. Never use alcohol to help you get to sleep. Although you may fall asleep faster after drinking alcohol, it significantly decreases the quality of your sleep.
Having a chronic illness such as lupus can sometimes make you feel powerless. But by embracing techniques that can improve your quality of life, you can regain control and live a positive and productive life with lupus.