published by nonprofit Johns Hopkins Press
posted in Joint pain, arthritis, musculoskeletal on April 17, 2024 by
Updated February 21, 2025
Close to 90% of people with systemic lupus erythematosus (SLE) will have joint and muscle pain. Fortunately, today’s lupus therapies reduce arthritis pain in most patients.
In this article, we’ll look at the effects of lupus on joints and muscles as described in “The Lupus Encyclopedia” in chapters 7, 13, 24, 25, 27, 36, 38, and 39. There are so many chapters that discuss pain in lupus because there are so many different causes of pain and, more importantly, effective treatments.
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NOTE: Johns Hopkins University Press, publisher of The Lupus Encyclopedia, is a nonprofit publisher. If you purchase JHUP books, like The Lupus Encyclopedia, you support projects like Project MUSE.
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This blog post article was edited and contributed to by Donald Thomas, MD; author of “The Lupus Encyclopedia.” Parts of this blog post come from “The Lupus Encyclopedia: A Comprehensive Guide for Patients and Health Care Providers, edition 2“
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The musculoskeletal system is comprised of the muscles (musculo-), bones (“skeletal”), joints, and adjacent structures (such as tendons). The joints are the hinges between the bones that allow movement.
Because the musculoskeletal system is the most common part of the body affected by SLE (causing aches and pains, or rheumatism), rheumatologists became the specialists dedicated to diagnosing and managing SLE patients.
Osteoporosis (fragile bones that can break) and avascular necrosis (where a section of bone dies) are also musculoskeletal problems that occur in SLE. However, these are usually not due to the inflammation of lupus itself and will not be discussed in this article.
The Lupus Encyclopedia (2nd ed.), p. 126
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In lupus, joint and muscle pain can arise due to inflammation, a hallmark of the disease. The immune system attacks healthy tissues, including joints, ligaments, and muscles, leading to pain, stiffness, and loss of range of motion. Other factors such as osteoporosis (fragile bones), fibromyalgia and avascular necrosis (bone death) are other common causes of joint and muscle pain in lupus patients.
Active lupus inflammation can attack the joints, causing lupus inflammatory arthritis, it also commonly attacks the tendons, causing tendonitis and tenosynovitis. Fortunately, this type of pain usually responds well to drugs that calm down the immune system, like steroids, hydroxychloroquine, methotrexate, Benlysta, and Saphnelo.
Some clues that pain may be from inflammation (i.e. inflammatory pain), and therefore treatable with drugs that calm down the immune system include:
Permanent joint and tendon damage can also cause pain. SLE patients who have permanent joint damage can find it difficult to distinguish between active inflammation pain (which is treated with anti-inflammatory drugs, hydroxychloroquine, and immunosuppressants) and joint and tendon damage pain (which is treated with pain reduction therapies).
Some clues that pain may be from permanent damage and not from inflammation and therefore treated with pain medications instead of drugs to calm down the immune system include:
Overactive pain nerves cause the pain of fibromyalgia. Exercise and nerve pain medicines like gabapentin, pregabalin, and duloxetine may help. Other nerve problems, like carpal tunnel syndrome and neuropathy, can also cause pain that can feel like it is coming from the joints and muscles.
Figuring out the cause of the pain is very important because treatments can differ significantly depending on the cause. A thorough history, physical examination, labs to assess lupus disease activity, and sometimes imaging studies are needed. In our clinic, and many other rheumatology clinics, we use ultrasonography of the joints to examine our patients. Ultrasound can identify whether the pain is from active lupus inflammation or not.
Unfortunately, fibromyalgia and permanent damage pains can be mistaken for inflammation pain and inappropriately treated with steroids or other strong immunosuppressant drugs, unnecessarily exposing patients to harmful side effects.
If you have great trouble getting help with your lupus pain, I highly recommend that you seek out a rheumatologist who can do ultrasounds in their office.
Effective management of lupus joint and muscle pain involves a comprehensive approach that includes medications and lifestyle adjustments. Here are some strategies to help reduce pain:
Medications may be prescribed to reduce inflammation and lupus inflammatory pain. These include:
Medications that can help reduce pain (pain relievers) include:
Physical therapy exercises and techniques can help improve joint flexibility, strengthen muscles, reduce pain, and protect joints. A qualified physical therapist can design an exercise program that is safe, effective, and based on their medical situation.
Making lifestyle changes such as maintaining a healthy diet, managing stress, exercising regularly, and ensuring adequate rest can help reduce pain. Avoiding triggers such as excessive sun exposure and cigarettes can also help. Other activities that can help reduce pain include:
Complementary therapies like acupuncture, massage, and herbal supplements can help reduce pain. However, consulting with a healthcare professional before taking supplements is important to ensure they are safe for you to take. Avoid supplements that state they “boost” or “support” the immune system. They can worsen lupus inflammation and even cause severe flares.
Supplements that may reduce lupus inflammation include turmeric (curcumin) and ginger. High-quality glucosamine sulfate and chondroitin can help osteoarthritis (permanent damage) pain. I recommend the brand InvigoFlex AM/PM as it is a pharmaceutical-grade product. (Note: I have no financial relationship with the company; I also take it myself… I practice what I preach).
Also, practicing mindfulness daily (like breathing exercises) can help reduce pain perception. People who practice mindfulness daily tend to be healthier, sleep better, and respond to stress more healthily. Read my article at Lupus Corner on the science behind mindfulness and how to start doing it yourself.
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Read chapter 7 of The Lupus Encyclopedia, edition 2
Look up your symptoms, conditions, and medications in the Index of The Lupus Encyclopedia
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If you have lupus, what has your experience been? What do you recommend for other patients?
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Have lupus 6 years cam 82 always tired in one thing , but the pain in my joints are so painful unable to sleep , have oxycodone 10mg doesn’t help. The psin moves around my joints. This happened occasionally flair . But when it happens it’s the worse psin ever . Nothing seems to help the psin. Don’t know what do. Desperate
Albert: Most of the time in my male patients, it is male pattern hair loss. However, lupus- associated hair loss can absolutely happen and is treatable. For male pattern, use Rogaine twice daily religiously to slow down loss and you can ask your doctor to RX minoxidil, just 2.5 mg daily helps. The trick is to find out exactly the cause of the hair loss… see my hair loss video here… I go into detail: https://www.lupusencyclopedia.com/hair-loss-and-lupus/
I hope your docs can help you,
Donald Thomas, MD
Laura: Thank you. I am happy that you are finding my book helpful.
For the symptoms you describe, if it is from neuropathy and confirmed on EMG/NCV testing, then it certainly could be due to Sjogren’s. Up to 50% of Sjogren’s patients have neurologic involvement. However, it is important to rule out other causes like carpal tunnel syndrome, cervical radiculopathies, diabetic neuropathy, low vitamin B 12, etc.
Bottom line is to ask your rheumatologist as it requires careful evaluation to figure this out.
Donald Thomas, MD
Hello, I have Common Variable Immune Deficiency, Sjogren’s and Lupus. I had a slightly positive ANA years ago, and a slightly positive SSA years ago. All labs and inflammatory markers have been negative since. I recently had a flare of Lupus with the usual symptoms, plus pretty severe muscle pain in both thighs (not joints). When my usual Lupus flare symptoms went away, the muscle pain went away, too. My rheumatologist said the muscle pain is unrelated to lupus because my labs look great, and I need to see a neurologist and physiatrist. She says she understands that CVID can cause some negative labs, but other labs would be abnormal if the muscle pain were related to lupus. I get it if the muscle pain was acting independently of the lupus symptoms, but the symptoms come and go together. Help!
Shari: I can say that many SLE patients can have flares yet all labs be normal, and myalgia can occur due to lupus during flares. I wish we could reliably prove SLE flares by labs. However, for example, only 1 out of 5 patients have reproducibly low C3 or C4 during a flare. Most patients do not have a higher anti-dsDNA during flares. This is why companies (like Progentec and Exagen) are developing more accurate labs to help us in these situations.
Of course, I can’t second guess your rheumatologist, but I can say that my statement above is true.
Donald Thomas, MD
Thanks so much. Any suggestions for Rheumatologists in NJ? This one is nice, but she types the entire time we are talking and often asks a question that I have already answered because she was typing. She does not tolerate much discussion outside of her questions and I have to be assertive to get myself heard. She can be quite dismissive at times. THank you again, hopefully there is someone else you can recommend.
Shari: I completely understand. This has unfortunately become the norm as docs are required to see more and more patients in less and less time. I’m “old school.” I review the record before going into the room, do a history and physical exam, discuss results and how my patient is doing, answer all questions, and make recommendations for further treatment. However, I can’t see nearly as many patients as other docs, but I feel much more satisfied in taking better care of my patients. I wish all patients could have the same experience.
Unfortunately, I do not know the NJ docs. What I recommend… Google who are all the rheumys near you. Google “Reviews and doctor’s name” … then look at the reviews on ALL review sites. Some will be all 5 stars due to taking advantage of the system… ignore those if other sites show 2 and 3 stars. However, if a rheumy has 4 and 5 stars across all review site.. you have a winner.
Good luck… let us know if you find a great one and share who it is.
Donald Thomas, MD
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