Tossing and turning under the covers at bedtime, you may wonder if your lupus joint pain is the reason you can’t fall asleep. When you’re living with lupus, it’s easy to end up spending quite a bit of time trying to understand your pain. Discovering what triggers your pain may help reduce it. Pain has a powerful way of taking over your thoughts, especially when you’re trying to sleep, making it difficult to focus on anything else.
“I have a lot of pain in my body during the night,” wrote one member of MyLupusTeam. Another replied, “I haven’t had a good night’s sleep for years — four to five hours is the best I can ask for. Pain keeps me awake.”
If this sounds familiar and you’ve been wondering if lupus-related joint pain or other symptoms are worse at night, keep reading to learn important insights into the possible reasons behind your nighttime pain.
Lupus can cause joint pain in different ways. The immune system, which normally protects the body, can mistakenly attack healthy tissues, causing inflammation in the joints. Additionally, lupus can also cause tendon laxity (loose tendons) leading to further discomfort. Understanding these different ways lupus can cause joint pain is crucial in managing and finding appropriate treatments for this symptom.
As an inflammatory autoimmune disease, a disease of the immune system, lupus is known for causing inflammation throughout the body, including in and around the joints. In most bodies, inflammation is a normal process that helps the body heal when injured. In lupus, though, the inflammation is used to attack the body itself, instead of invaders that need to be destroyed.
When the joints become inflamed, it’s called inflammatory arthritis. This inflammation can also occur in tendons, which connect muscles to bones and help your body move.
If you experience tendon laxity, it can cause joint pain if the tendon is not holding the muscles and bones together properly. Your bones can actually slip into the wrong position, making it harder to move, causing even more inflammation.
Joint pain associated with lupus is usually worse in the morning. When swollen joints are still for a long time and don’t move regularly, like when you’re asleep, they can get stiff and be even more painful than usual.
However, it’s not out of the question that some people might experience more joint pain from lupus at night. In fact, over a six-month period in the United Kingdom, more people searched using the words “pain management” between 11 p.m. and 4 a.m. than at any other time of day. Although this research doesn’t give a clear answer, it suggests that people may feel more pain or pay more attention to it during the night compared to the rest of the day.
Not being able to sleep may also contribute to experiencing more pain at night. This connection can work in several different ways.
If you’re in too much pain, it might be hard to sleep. In fact, a study of 30 people with systemic lupus erythematosus — the most common form of lupus — found that participants experienced more frequent sleep disruptions because of pain than did people who were not diagnosed with lupus. They also reported being awake longer in the middle of the night than those without lupus.
Another study of more than 3,500 people showed that sleep was worse after a day when the pain was bad. This potentially creates a vicious cycle for people with lupus — pain causes poor sleep, which then causes more pain. While the pain is not necessarily worse at night, it might feel worse when you are lying awake focused on it because it’s keeping you awake, knowing that you’re going to have another rough day if you can’t get some sleep.
Because lack of sleep and pain are so closely connected, it’s important to figure out how to manage your insomnia so you can get some rest, which may improve your pain levels all day long.
Cognitive behavioral therapy has been shown to help with both sleep and pain in many studies looking at ongoing pain. This type of therapy helps you change patterns in your life and your thinking so you can improve the way you feel.
If you’re living with lupus, try to develop good sleep patterns, also known as sleep hygiene, including:
Keeping bedtime and waking-up time consistent goes a long way in establishing sleep hygiene. The timings should be the same throughout the week as well as during the weekends and holidays. Or, you may consider sleeping later if it fits your schedule, so you can get enough restful sleep. Listen to your body and do not exert yourself.
Some people find that even if they have trouble falling asleep, they can increase their total sleep hours by staying in bed until the morning. “On my days off, I allow myself to sleep in later if I can,” one MyLupusTeam member wrote. “Because if I sleep well at night, I can do better pain-wise.”
You may want to talk to your rheumatology team about how to get more sleep. They may be able to prescribe something to help you sleep or work with you on pain management so you don’t spend your nights awake wishing for relief.
You’ll also sleep better if you find ways to ease your pain. Following are several treatments that may help.
Your doctor may suggest medications for pain management. Some of these have side effects, so you may need to try a few before you find one that works for you. Your doctor might have you try:
Several pain-relief methods include treatment with amitriptyline to change pain perception and other antidepressants for pain modulation (processes that can change how we feel and experience pain).
Physical therapy may also help. If you can learn to move your body safely, you may experience less pain. A physical therapist may also be able to help you find ways to move at home that reduce your pain or cause you to stop experiencing pain.
Physical therapy plays a crucial role in keeping the muscles and bones healthy. It helps increase muscle strength, which can help fight the joint pain caused by inflammation in people with lupus and other rheumatic diseases. By participating in physical therapy, those with lupus can reduce their pain and improve their overall muscle and bone health.
Treating your lupus effectively is important, too. If you’re having more pain because your lupus is no longer under control or if you’re having a lupus flare-up or a time of increased disease activity, then it’s time to talk to your rheumatologist to try a different solution. When your lupus is not flaring, you should have less pain and be able to sleep better.
There are many lupus medications available. Some people use immunosuppressants, like azathioprine (Imuran) or belimumab (Benlysta). Others find methotrexate (Rheumatrex) or hydroxychloroquine (Plaquenil) effective.
Treating lupus should be customized for each person, considering factors like the severity of the disease. Make sure to follow your rheumatologist’s guidance to effectively control lupus. Avoid relying on over-the-counter pain medications for lupus, as they can have harmful long-term effects.
Some people find that things they can do at home, like applying heat to their joints when they have joint pain, do a lot to help ease pain. You might also find that avoiding specific movements can improve your well-being and exercising regularly may keep the pain at bay.
“I keep my house around 66 degrees year-round so I can use an electric blanket at night for joint and back pain,” one MyLupusTeam member wrote. “The heat is so soothing — if not for the heat, I would have to take more pain meds.”
Living with joint pain and other common symptoms of lupus can get tough, and it’s easy to feel anxious, depressed, or just generally down. These feelings can cause tension in your body, which can make your joint pain worse. In fact, it might even be worse at night when you don’t have anything to distract you from the pain. Talking to a therapist or joining a lupus support group might help you feel better.
If you’re experiencing considerable pain at night, talk to your health care professional for medical advice and guidance. Your doctor will help you come up with a solution specific to your needs that should help you feel better — and sleep better — soon. Managing lupus requires a team effort, involving you (or your loved one), your family, and your doctor. You may also consider seeking support groups that come together to manage lupus, providing additional support and guidance.
MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 223,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.
Are you living with nighttime joint pain due to lupus? Have you found anything to manage your pain? Share your experience in the comments below, or start a conversation by posting on your Activities page.