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.
Excerpt from chapter 7, “The Musculoskeletal System,” on joint and muscle pain:
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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Causes of Lupus Joint and Muscle Pain
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.
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:
Morning stiffness lasting less than 30 minutes
“When I wake up stiff, it works out by the time I am done with my shower”
Pain with activity that improves with rest
Crackling sensations (crepitus) in the joint
Bony swelling of the joint
Lupus inflammation is absent elsewhere (such as lupus rash, pleurisy, and oral ulcers)
Labs like ESR, CRP, anti-dsDNA, anti-C1q, C3, C4, and/or EC4d may be normal
Fibromyalgia and Nerve Pain
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.
Managing Lupus Joint and Muscle Pain: Strategies for Relief
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
Medications may be prescribed to reduce inflammation and lupus inflammatory pain. These include:
corticosteroids, like prednisone and other cortisones
disease-modifying antirheumatic drugs (DMARDs), like methotrexate
Medications that can help reduce pain (pain relievers) include:
NSAIDs
Tramadol
Acetaminophen (Tylenol)
Topical NSAIDs (like Voltaren)
Lidocaine patches
Capsaicin cream (use a roll-on brand to prevent getting the hot cream in your eyes and genitals)
Cortisone injections
Hyaluronate injections
Gabapentin and pregabalin
Duloxetine
Physical Therapy
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.
Lifestyle Modifications
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).
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
Keep record of exacly when and where you have pain and describe the type of pain (e.g burning, gnawing, prickling, etc.) This will assist your Dr in yout treatment plan. A good Rheumathologist will adapt your medication until he finds what works best for you. Had the same problem.
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/
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