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Tips and tricks for sleeping with lupus.

Systemic Lupus Erythematosus (SLE) is an autoimmune disorder, which means that it is heavily effected by stress and the general health of the body, including how well you are sleeping. 

Sleep is important to a healthy body and mind, and most experts estimate that, while there is some variety between individuals, the body generally needs about 8 hours of sleep a night. Sleep is immensely important to the body for a variety of reasons:

  • It gives your heart a break. While asleep, the heart doesn’t work as hard and is able to rest and repair itself from possible damage. 
  • It affects metabolism, in part because sleep is an energy-conserving state and is a great time for the body to digest, process nutrients, and recharge energy and nutrient storage at a time that it won’t immediately be needed.
  • The immune system works very well when we are not moving around or being exposed to new pathogens. A lot of the time, the immune system is most active at night. Though this sounds bad for people with lupus, it is actually very helpful. During sleep, important immune system processes may occur that people with lupus need, such as culling the immune system molecules that target the body’s cells.
  • It allows the brain and body to clear out waste products and refresh and restore itself. Sleep is a time where the body performs maintenance, including clean up and repair. Lack of sleep can make thinking difficult and inefficient because of a lack of clean up and repair, like fog over the brain.

However, it can be tricky in our society to get enough sleep, and it’s even harder for people with autoimmune diseases such as lupus.


What is Sleep?

What is sleep, exactly? Sleep is a resting state for the body, where the mind goes unconscious, and the body moves only minimally. In most people, sleep usually occurs in a cycle depending on the time of day, typically the night. However, people can retrain their body’s sense of time, also known as the “circadian rhythm,” to accommodate other types of schedules such as night shifts. The brain is the organ that keeps track of time, through both an internal sense of time and the presence of light and darkness. When the body detects that it is its sleeping time, it releases hormones such as melatonin and begins processes in the body that prepare it for sleep and make you feel drowsy. When it’s time to wake up, it starts the process of waking up and promotes alertness. Artificial light, stimulants, and age can warp and erode this internal clock, leading to poorer sleep. 

Sleep problems are common for people with lupus, including narcolepsy and insomnia – both too much and too little sleep! 

Sleep and Lupus

Over half of people with lupus also experience problems with sleeping. Some people with lupus suffer from insomnia, where it is difficult to go to sleep and involves long periods of being tired yet remaining awake. They can also have symptoms of narcolepsy, which is inappropriate sleepiness or tiredness during the day, sleep in inappropriate areas, and even can involve collapsing into sleep without warning.  Insomnia, oversleeping, and narcolepsy can all be caused by lupus. Oversleeping has similar causes because, often, it is a reaction to poor-quality sleep due to a noisy environment, bright lights, and caffeine in the system. Pain from lupus can also disrupt sleep, and even when it’s not enough to fully wake you, it’s still costing you sleep quality.

Autoimmune diseases and lupus experience more sleep issues because pain, as well as inflammation itself attacking the nervous system, gut, or other cells, can disrupt the chemistry and signaling mechanisms of the body, and make it more difficult for the body to sleep. The problem with sleep disruption is that it tends to get worse if left alone, and then becomes more difficult to remedy. Here are some tips and tricks for people with lupus to help them get the sleep that they need.

Many people with lupus experience neurological symptoms of lupus and this can affect sleep in many ways – not the least of which being that the part of the brain that regulates the hormones that control sleep can be damaged. Fatigue is also a neuropsychiatric symptom that can contribute to sleep issues. 

This is not the only way that the neurological symptoms of lupus can affect sleep, but the point is that lupus can make sleep – and the traditional ways to improve your sleep experience – very complicated.

Lack of sleep can increase the sensation of pain, and sleep can be disrupted by pain. Break this cycle and take back your sleep with these tips and tricks!


What is Some Basic Sleep Advice for People with Lupus?

In our previous article on sleep and lupus, we go over the basic advice that you can find anywhere about managing your sleep. You can read that article here. Though this basic sleep advice is great for sleep hygiene, it can be difficult to put these strategies into effect and they don’t work for everyone.

In this article, we will go a bit deeper, since lupus can make these so-called “basics” very complicated indeed. 

The inflammation caused by lupus can cause fatigue (which is primarily a neurological issue,) sleepiness, and problems regulating mood and motivation. Not being able to sleep properly increases stress, which increases inflammation, which can cause more symptoms of lupus. It’s important to get a handle on sleep for a person with lupus, but the situation is much more complicated than just a sleep hygiene or environment issue.

However, these basic steps might be a good place to start.

The Basics

Go to Bed and Wake up at the Same Time.

Going to bed and waking up at the same time will get your body used to a schedule and encourage natural sleep and wake cycles. 

The Problem: Life can be hectic. Sticking to a consistent schedule is difficult, especially if you do not have a ‘traditional’ job. Breaking this schedule to sleep in or stay up on weekends can also disrupt the body’s sleep rhythm that you worked so hard to set, which many people find frustrating. It’s also difficult to wake up and go to bed at the same times if you are having trouble with your sleep schedule in the first place, making it a frustrating cycle that can be tricky to break. 

People also have different ideal schedules, one analysis of a small sample of adolescents participating in a sleep study found that that nearly 50% of people may have bodies that naturally wake up late. When forced to wake up early, people with naturally late sleep schedules often take naps and feel tired and unfocused. They also have more trouble falling asleep. If you are this type of person, it can be difficult to create a schedule that accommodates your and your work needs. This can make creating a consistent schedule that gives you the recommended amount of sleep difficult.

Tips: If you only focus on one part of your sleeping schedule, prioritize trying to get down the time that you go to bed. Once that is set into routine, figuring out a consistent wake time might be easier. 

Limit Light and Noise in your Sleeping Area. 

Bright light (including technology screens) and noise make it difficult to go to sleep, so it makes sense that if you limit the light and the noise, it will be easier to sleep. 

The Problem: However, while this advice seems simple, cutting down noise is sometimes impossible due to the nearby environment, appliance noise, or your personal noise sensitivities. 

Light can also be tricky to limit and limiting light, even in the form of screens, has mixed effects. Many people use their phones as alarms, and often only have time to work or play on their devices late at night. Blocking light from a window might help with sleep, but it also can make it difficult to wake up since light is also the body’s way to detect daytime and a cue for it to wake up.  

Tips: There are many ways to change how light and sound enter your sleeping space. Earplugs, white noise machines, and eye masks are a potential solution for people trying to manage these problems. For technology, there are glasses that filter out blue light (which is responsible for triggering wakefulness-promoting chemicals in the brain) and settings like night mode, which can be very helpful for people who find it inconvenient or difficult to ‘unplug’ or stop looking at screens near bedtime. The do-not-disturb setting on the phone can avoid notifications interrupting sleep at night, though some people find that putting the phone in another room entirely is an even better policy.

Temperature control is a little more manageable. Most homes have some measure of air conditioning or heating, and the use of fans or comforters can help keep the temperature in a range where it feels comfortable. Comfort is also key – a comfortable temperature, mattress and pillow can potentially make a huge difference. Temperature, notably, can also effect pain. Using hot water bottles or strategically placed pillows can potentially make a huge difference to your sleep even if you can’t change other factors in your environment.


Avoid Caffeine

Avoiding caffeine is not bad advice. Caffeine, usually taken in the form of coffee or tea, is a chemical that is able to cross the blood-brain barrier and affects the nervous system. It does not actually increase energy. Instead, it pushes the body’s metabolism and nervous system activity harder, causing it to use more energy, leading to a feeling of increased alertness and a positive, focused mood. 

Whether caffeine is okay for people with lupus appears to be a mixed bag – some people have found that a cup of coffee is exactly what they need to get through the day. Others find that it increases their flares and that it causes fluctuations in their blood pressure. In this case, caffeine in the form of tea, coffee, or other sources can interfere with sleep in a big way.

It is also addictive, as the body develops resistance, meaning that at some point, caffeine is required to feel ‘normal’ and a higher dose will be needed to gain an increased wakefulness effect. Caffeine can keep you from feeling tired or falling asleep. Not taking caffeine 6 hours before bed is a good guideline, but it depends on the concentration of caffeine – some very high-caffeinated substances can affect the system 8 or even 12 hours on! 

The Problem: Many people rely on caffeine to stay awake and alert. It is a habit that is very difficult to quit, especially since the needs of work and life encourage it. Also, as with anything to do with the body and diet, it is much more complicated than just keeping people awake and alert at inappropriate times. Meanwhile, some people find that warm beverages, regardless of caffeine content, put them to sleep.

Caffeine actually can help keep melatonin in the blood because it uses the same enzyme as melatonin to break down. Because of this, there simply isn’t enough enzyme to break down the melatonin. Blood levels of melatonin often rise after taking caffeine, which could be one of the reasons why people sometimes feel tired after drinking coffee.  So, while a rule of thumb, it’s also very body-specific.

Tip: It’s not a bad idea for a person with lupus to try cutting back on caffeine in general. Warm drinks can aid sleep, while herbal teas can assist with wakefulness. It is also possible to change your environment to encourage an alert, positive state. 

Tips and Tricks for Sleep with Lupus

Again, this is the basic advice that you will find everywhere on the internet, in classes, and in therapy. While a person with lupus might be able to use this basic advice, sometimes these strategies are just not attainable, or they don’t work. Sometimes, they aren’t the problem at all. So, what tips and tricks might actually work for a person with lupus struggling with sleep?

Have a Snack before Bed

You are what you eat, and sleeping is no exception. A balanced diet that includes protein and complex carbohydrates, eaten at intervals throughout the day, can help keep your energy balanced throughout the day and prevent rushes and crashes. Small portions may be more manageable for people with lupus, and they can help keep your energy levels stable. A balanced diet can also help rule out or reduce the effects of cardiovascular disease on the body.

Eating before bed can cause indigestion and keep you awake, but the key is to eat small, snack-size portions before bed. Certain kinds of foods either provide nutrients associated with sleep, have carbohydrates that cause a drop in blood sugar (and tiredness,) or make you feel full, calm, or comfortable. 


Foods to Eat

Magnesium and melatonin-rich foods like nuts boost encourage a natural sleep response, in addition, reduce inflammation. Nuts are also known to trigger the production of serotonin, which is important for sleep. Foods rich in vitamin D and fatty acids such as fish also encourage the release of serotonin, making fatty fish such as salmon, tuna, mackerel, and trout very good bedtime snack foods.  

Rice, cereal, or oatmeal all have carbohydrates that quickly enter the bloodstream, causing a ‘crash’- like effect and drowsiness. Though some people with lupus will not want to alter their blood sugar in this way, many people use the ‘crash’ as a way to encourage their bodies to go to sleep and, as the blood sugar equalizes and the grain-based foods digest, the body feels full and nourished and stays asleep, and then wakes up with energy available.

Certain beverages can also be a good idea. Warm milk is a well-known insomnia remedy and it works because of a combination of having a comforting feeling in the mouth and the hormone tryptophan, which is what causes the same pleasant and satiated feeling as a turkey dinner. Tryptophan-rich foods are processed into melatonin in the body. These foods include many fruits and vegetables, including tomatoes, olives, barley, rice, walnuts, and grapes.

Foods to Avoid

Avoid alcohol, and avoid large, spicy, or highly sugary foods. Alcohol can appear to be a sedative, but is not good for people with lupus and its assistance with sleep is debatable at best. People who use alcohol to help them sleep often report poor sleep quality and wake up frequently through the night.

Large meals and spicy foods can cause indigestion or a condition called acid reflux, where acid from the stomach washes up into the esophagus and causes a burning sensation. This is also known as heartburn, and is a common trigger of insomnia. Sugar and caffeine-containing food encourage the body to stay awake, and so should be avoided before bed. You can read more about sugar and lupus here

Supplements, Sleep and Lupus

You get most of your melatonin from food. However, some people take melatonin pills to encourage sleepiness. Melatonin is a hormone in the brain that is a part of how you regulate your circadian rhythm – your natural sleep cycle. Previously, people with autoimmune disorders were told that they should not take melatonin supplements, as it could cause an increase in proinflammatory molecules, turning up inflammation and potentially causing a flare. However, more recent research  also seems to imply that melatonin reduces inflammation and the symptoms of autoimmune disease. Melatonin is used in many different body functions, so it’s not surprising that people are seeing contradictions. 

Overall, though, taking melatonin is perfectly fine for people with lupus. Doctors recommend that melatonin tablets be taken with food about 1-2 hours before bedtime. They will cause sleepiness and a ‘pull’ towards sleep, so you should only take them if you intend on going to sleep at that time.

Many people also take supplements to help them sleep, including Valerian root, magnesium, lavender, gingko bilboa, L-theanine, and glycine. Studies have shown that these supplements do have an effect on relaxation and sleep. However, supplements are not harmless. Check with your treatment team to make sure that the supplements don’t interfere with your medications.

Exercise, Relaxation techniques, and lupus

Regular light physical activity can tire out the body and promote proper sleep. If you exercise regularly, at the same time each day, it is also a great way to set your circadian rhythm by giving your body a way to mark the time. Exercise can also make you feel more awake, so many people exercise early in the day, and the benefits last into the night. 

Something better done at night, however, is relaxation techniques. Relaxation techniques like meditation, soothing music, or ASMR can potentially help as well. Try doing relaxing and meditative activities before bed, such as meditation or journaling. That can help the mind and body wind down for bed.

Taking a warm bath or shower before bed can make the body feel relaxed and comfortable. Warm baths can also reduce joint pain. Because of this, people with lupus might find that taking a warm bath will help you sleep a lot better.

vitamin d

Check for Other Issues

Sometimes, problems with sleep, either difficulty sleeping or difficulty waking, can be a sign of a more serious underlying issue. Lupus itself can cause damage to the body that leads to medical complications. For example, damage to the thyroid due to lupus can also be a contributor to daytime sleepiness that won’t be helped by changes in sleep routines. Taking lupus medications regularly will keep lupus symptoms under control, which could benefit to your ability to sleep.

Making sure that you aren’t having trouble breathing while sleeping  may be key. If you snore or have any sort of change in your breathing, that could seriously affect your sleep quality and it might be a symptom of other underlying problems. Dealing with the snoring might be able to help with sleep, and deal with other problems just beneath the surface. A sleep doctor can help with treating possible breathing issues.

Some medications can make you feel sleepy or fatigued – reducing or adjusting the dosage might help with your sleep problems.

Mental Health and Sleep

Poor sleep quality in SLE might not be a symptom of the disease, but from secondary effects of the disease – the burden that SLE puts on your mental health. Between the pain from lupus, neurological symptoms of lupus, and certain steroid medications, depression and anxiety caused by lupus could be a part of why you are having trouble sleeping. 

Depression can make it difficult to sleep properly, either by causing insomnia or oversleeping. When someone is tired, they are more likely to have what is known as a ‘sedentary lifestyle,’ or not to be active in doing exercise. A lack of exercise can lead to lower energy levels and poorer sleep, which only feeds back into the depression feedback loop.

Therapy can help with sleep. Sometimes, even if we are not conscious of it, depression  and anxiety keep us awake or interfere with our sleep. Therapy can help put these monsters to rest, so that you can also get some rest.

If a therapist is unavailable or too expensive, try meditation or positive affirmations. Those can be surprisingly powerful tools to treat mental health.

Anything Else to Help with Sleep?

Sleep medications can help, and are worth a try, but there are a lot of other methods that you can try to improve your sleep that won’t be resisted by the body. 

Also, sometimes you need a nap to get through the day. Naps can cause issues with your sleep cycle, but if done in short bursts at the same time every day, you can become used to it and it will become a part of your sleep schedule.

Figuring out how to manage your sleep schedule can be a game changer for people with lupus. We hope that our tips proved to be useful and gave you a few more options to try.

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