Insomnia — difficulty falling or staying asleep — is a frequent challenge for people with lupus (also known as systemic lupus erythematosus). Discomfort from lupus symptoms, medication side effects, and symptoms from co-occurring conditions like fibromyalgia can all cause sleep disturbances.
One MyLupusTeam member shared that they had frequent insomnia. “I’m not sure how I’m going to function at work tomorrow,” they said.
Sleep problems can negatively impact your overall well-being and quality of life. They are especially frustrating when quality sleep is critical for preventing lupus flare-ups and managing extreme fatigue, which is common among people with lupus.
If you’re experiencing insomnia or trouble sleeping with lupus, you’re not alone. Talk to your doctor. They can help you determine the cause of your sleep troubles and work with you to find the best ways to manage them.
Many MyLupusTeam members discuss their insomnia or other sleep troubles. “Anyone awake?” asked one member. “Haven’t been sleeping much at night; it makes for a long night being bored.”
Some people with lupus have more difficulty staying asleep. One member wrote that they “might fall asleep, but don’t stay asleep — I’m up an hour or two hours later.”
Another member shared a similar experience: “I don’t have any problems falling asleep; I just don’t stay asleep due to the fibromyalgia. I also need a double hip replacement, so I get discomfort from that as well.”
For some, difficulty falling or staying asleep comes from lupus symptoms like chorea (involuntary muscle spasms or movements). “Can’t sleep,” shared a member. “Involuntary movements won’t stop. They only stop when I sleep.”
Another member responded that they also have involuntary movements. “Keeps me up because of what I call ‘creepy crawlies,’” they said. “It takes forever to fall asleep.”
Several factors — sometimes in combination — can contribute to sleep problems when living with lupus. These include lupus symptoms and some lupus treatments.
Two of the most common symptoms of lupus are joint pain and joint swelling. The disease may also cause muscle aches, headaches, and abdominal pain.
Furthermore, some people with lupus also have fibromyalgia. Fibromyalgia, which often occurs alongside autoimmune diseases like lupus, causes joint and muscle pain throughout the body.
This combination of symptoms can cause chronic pain that can make it difficult to get comfortable enough to fall or stay asleep — a problem sometimes referred to as “painsomnia.”
Anxiety and depression have been found to affect people living with lupus at higher rates than people who don’t have lupus. Many aspects of living with lupus may contribute to mental health issues, including the stress of the diagnosis itself, lupus symptoms and flare-ups, and managing treatment.
Both depression and anxiety have been associated with insomnia and sleep difficulties. A lack of sleep and poor sleep quality can also contribute to feelings of anxiety or depression. These feelings can then make it harder to sleep, creating a negative feedback loop where each symptom causes the other to worsen.
Research has found that some people with lupus experience movement disorders. One such disorder is chorea, which causes involuntary muscle movements like jerking, spasms, or shaking. As several MyLupusTeam members have described, these muscle movements can make it difficult to fall asleep. Once you are asleep, however, the symptom usually stops.
Some treatments for lupus may contribute to insomnia. Some MyLupusTeam members have noted that taking the corticosteroid prednisone, in particular, has caused them to have difficulty sleeping. Prednisone and other steroid medications can cause feelings of hyperactivity or insomnia, especially when taken before bed.
It’s possible to experience insomnia that’s not directly caused by lupus. You may experience sleep disorders, such as sleep apnea or restless leg syndrome, alongside lupus symptoms. If you are unsure what’s causing your insomnia, talk to your rheumatologist. They can assess your symptoms and perform any necessary testing to rule out other potential causes of your sleep problems.
If you’re experiencing insomnia or trouble sleeping with lupus, talk to your doctor. Your rheumatology team can determine the cause of your insomnia and find ways to manage or alleviate it while still treating your lupus. They can also refer you to a sleep specialist to help address your sleeping problems.
Following are six tips to help you get a better night’s sleep.
Successfully treating your lupus is one of the first steps to preventing or managing insomnia. Working with your doctor to get your lupus under control can help to minimize any symptoms that are causing sleeping difficulties. Be direct and honest with your rheumatologist about any symptoms you’re experiencing, even if you’re unsure if they’re related to lupus. If your doctor has a full picture of your symptoms, then they can help provide more effective tools for managing them.
Talk to your doctor if you suspect that your medication may be contributing to your insomnia. They may recommend certain changes — such as taking your medication in the morning rather than at night — to help prevent this side effect. You should not stop taking any medications or reduce your dosage without talking to your doctor first. Stopping medications abruptly could result in harmful withdrawal symptoms.
“Sleep hygiene” refers to routines and environmental changes that can help you get the best sleep possible. Practicing good sleep hygiene can help give your body the structure it needs to fall asleep, even if you’re experiencing pain or other lupus symptoms. Practicing good sleep hygiene includes:
If you do wake up at night, get out of bed and do a quiet activity like reading. Don’t try to go to bed again until you’re sleepy, or your chances of falling back asleep will be lower. You might also try some relaxation techniques, like meditation, to calm your nervous system before trying to go to sleep again.
Some people find that certain supplements or natural sleep aids help ease lupus symptoms and promote better sleep. “Have you tried calcium/magnesium before bed?” asked one member. “It stopped my nighttime leg cramping and helped with overall achiness.” Another member wrote that “Tylenol PM helps too, which my rheumy told me to take when I asked about a sleep aid.”
Some research has found that women with lupus have lower levels of melatonin than those without lupus. Melatonin is a substance that occurs naturally in the body and helps promote sleep. It is also available as a sleep aid that can be purchased over the counter.
It is important to talk to your doctor before incorporating any new supplements or sleep aids into your lupus treatment plan. You need to be careful to avoid any potential side effects or harmful interactions with your lupus treatments.
In addition to the above strategies, members of MyLupusTeam have shared the following tips for improving sleep with lupus:
Members have also found that meditation, hot baths, reading, and drinking herbal tea are helpful for falling asleep.
Your health care provider may suggest different practices to help with insomnia, like keeping a diary of your sleep habits. Bring this sleep diary to your follow-up appointments. Sharing your sleep patterns with your doctor — such as when you experience lupus symptoms and how they impact your sleep — can help them determine the best treatment plan for you.
Are you or a loved one living with lupus? Consider joining MyLupusTeam. Here, over 214,000 members talk about a range of personal experiences and struggles with lupus. Insomnia and trouble sleeping are some of the most discussed topics.
Do you have trouble sleeping? What do you do to improve your rest? Share your insights in the comments below or by posting on your Activities page.