Lupus (also known as systemic lupus erythematosus, or SLE) is a chronic autoimmune disease in which the immune system mistakenly attacks different parts of the body. One of the most common symptoms of lupus is joint pain. In fact, an estimated 95 percent of people with lupus will experience joint-related symptoms at some point. During lupus flare-ups, your joints may swell and feel warm, sensitive, and painful.
Many MyLupusTeam members have described experiencing joint pain during lupus flare-ups. “My joint pain is especially bad right now,” wrote one member. “During the night, every single joint in my body aches. When I get out of bed, I can hardly walk and feel like I am 100 years old. I am usually slow to realize it is the lupus that does this to me.”
“Woke up as stiff as a board,” wrote another member. “All of my joints are hurting. Fingers swollen. In the middle of a flare. Can’t wait till it calms down. Been out of work all month long.”
Lupus-related joint pain can be challenging and put a damper on your everyday activities and responsibilities. Luckily, several strategies can help manage joint pain, swelling, and stiffness with lupus.
Potential causes of joint discomfort in lupus include the disease itself, which can cause arthralgia, or joint pain unrelated to arthritis. However, in many cases, the inflammation characteristic of lupus affects the joints and their surrounding tissues, leading to conditions like tendinitis, carpal tunnel syndrome, and arthritis.
There is even a type of arthritis specific to those living with lupus. Referred to as lupus arthritis, this condition is similar in many ways to rheumatoid arthritis. Both tend to first affect the small joints (those of the wrists, hands, and feet) and cause symmetrical symptoms — they affect the same joints on both the right and left sides of the body. Lupus arthritis can also affect larger joints, including those of the shoulders, elbows, and knees.
Unlike rheumatoid arthritis, lupus arthritis and lupus-related joint pain do not typically cause long-term damage to the joints. However, people with lupus may still experience joint tenderness, pain, swelling, and stiffness that can interfere with their everyday life, overall functioning, mental health, and well-being.
Managing joint pain with lupus can involve several therapies, including lupus treatments and lifestyle changes. As always, talk with your rheumatologist if you experience new or worsened lupus symptoms. Your rheumatology team can determine the cause of your joint discomfort and work with you to find the best ways of managing it while limiting side effects.
Once your rheumatologist has determined the cause of your joint symptoms, they can recommend or prescribe the right treatments. Nonsteroidal anti-inflammatory drugs (NSAIDs), such as naproxen and ibuprofen (Advil), are often used as the first line of treatment for mild to moderate joint pain and inflammation in lupus arthritis.
Some treatments for lupus, including the antimalarial drug hydroxychloroquine (sold as Plaquenil), can effectively treat lupus arthritis and its accompanying joint symptoms but may take several months to start working. If these drugs do not provide relief, your health care provider may prescribe immunosuppressants or short-term corticosteroid (steroid) medications, such as methotrexate or prednisone, to help relieve inflammation and joint pain.
If you’re experiencing joint stiffness and pain, physical activity may feel like the last thing you want to attempt. However, lack of exercise can cause the muscles to weaken, placing more burden and stress on the joints over time. This, in turn, can cause even more joint discomfort.
When your disease activity is low — meaning you are not in a flare — regular exercise can help strengthen your muscles and improve flexibility. The Arthritis Foundation recommends low-impact aerobic exercise, as well as strengthening and flexibility regimens, to help alleviate joint pain. You may also want to try gentle stretching or guided exercises designed for people with joint pain.
One MyLupusTeam member shared their love of swimming: “I love to do water exercises! But unfortunately, my arms get a skin rash on them, and they won’t let me in the pool. It is the only form of exercise I can do besides tai chi.”
If you are unsure where to start when it comes to physical activity, speak with your rheumatologist. They may recommend seeing a physical therapist who specializes in working with people with inflammatory arthritis and can help you design an effective routine that doesn’t put undue stress on your joints.
Rest is as important as regular physical activity. As the Arthritis Foundation notes, during flare-ups, it’s key to get plenty of rest to help prevent fatigue and further inflammation. This means giving your body a break when it needs it and getting enough quality sleep.
One MyLupusTeam member learned the hard way how important it is to take breaks: “I have been bedridden with a flare for one week,” they shared. “I hate being in bed, but every time I get what feels like a burst of energy, I get up and try to do something and wind up worse the next day.”
Both hot and cold therapy can help alleviate pain and swelling due to inflammatory arthritis. The two work in different ways — heat can help improve flexibility and loosen tight muscles, while cold provides numbing and helps calm swollen joints.
You can try several forms of hot and cold therapy. If you prefer heat, you can use a hot water bottle or a damp washcloth warmed in the microwave (Cleveland Clinic recommends microwaving for about 20 seconds), or you can take a warm bath or shower. For cold therapy, try applying a gel-filled ice pack or a bag of frozen peas to the affected joints for 20-minute intervals.
Hot and cold therapy can also help make physical activity more comfortable. You can warm up your joints beforehand to promote flexibility and loosen muscle tension, then use cold therapy to help reduce swelling or aching after exercise.
Supportive aids include a wide range of garments and devices that provide additional support to inflamed, painful joints. Canes, braces, and orthotic shoe inserts can help improve mobility and reduce the burden on the joints that need it most. Your rheumatologist or a physical or occupational therapist can help you determine which devices are right for you.
Other devices designed for those with joint pain or limited mobility may also help simplify everyday activities. One MyLupusTeam member shared a unique product they found when joint pain interfered with brushing their hair: “I was getting to the point where I couldn’t brush my hair. The claw clip is a godsend, but my hairdresser put me onto a new brush that I can actually use, and it’s not too taxing. It’s called a Glide brush — goes through knots really easily.”
Are you or a loved one living with Lupus? Consider joining MyLupusTeam, the social network and online support group for people living with lupus and those who care for them. Here, over 214,000 members talk about a range of personal experiences and challenges.
Joint pain is one of the top 10 topics most discussed. Join today to share your story, ask and answer questions, and connect with members from around the world who understand life with lupus.
Have you experienced joint pain with lupus? How have you managed it? Share your thoughts or tips in the comments below or by posting on your Activities page.