Are you in constant pain with lupus?

Table of Contents

What is lupus?

Lupus is an autoimmune disease where the body’s immune system attacks its own healthy cells and tissues, causing inflammation and damage. The most common symptoms of lupus are joint pain, skin rashes, fever, fatigue, and swelling. Lupus can affect any part of the body, but it most often impacts the joints, skin, kidneys, heart, lungs, blood cells, and brain. About 1.5 million Americans have lupus, with 16,000 new cases diagnosed each year. Women are about nine times more likely to develop lupus than men, especially in childbearing years between ages 15 and 44. While there is no cure for lupus, symptoms can be managed with medications and lifestyle changes.

What causes the pain associated with lupus?

There are several reasons why lupus can cause significant pain:

Inflammation – When the immune system attacks healthy tissue, it causes inflammation and swelling that can put pressure on nerves and joints, leading to widespread pain.

Joint damage – Up to 90% of people with lupus experience joint pain. Lupus can cause cartilage and bone erosion, making movement difficult and painful.
Muscle pain – Lupus can cause myositis, or muscle inflammation, leading to achy, tender muscles.
Nerve pain – Inflammation can put pressure on peripheral nerves, causing tingling, numbness, and shooting nerve pain.

Skin pain – Skin rashes and lesions associated with lupus can be very painful.
Chest pain – Inflammation around the lungs and heart can cause pleurisy and pericarditis, leading to chest pain, especially with breathing.
Headaches – Lupus can cause severe migraine-like headaches due to inflammation of the brain or skull.

In essence, the widespread inflammation and autoimmune activity with lupus can impact joints, muscles, nerves, organs, and skin, leading to constant and sometimes debilitating pain.

What areas of the body are most commonly affected by lupus pain?

The most common areas affected by lupus pain include:

Joints – Hand, wrist, knee, elbow, and hip joints are often inflamed, causing pain, stiffness, and swelling.

Muscles – Pain and tenderness in the shoulders, thighs, hips, and neck are common.
Bones – Some people with lupus develop osteonecrosis, or bone death, leading to deep bone pain.
Skin – A butterfly-shaped rash across the cheeks and nose is classic. Painful rashes and lesions can arise anywhere.

Chest – Inflammation of the lungs or heart can cause pleurisy or pericarditis with sharp chest pain.
Nerves – Tingling, numbness, and neuropathic pain is common in the hands and feet.
Head – Severe migraines and headaches are often experienced.

Symptoms like fatigue, fever, and cognitive dysfunction can exacerbate the pain and discomfort of lupus. The pain can range from mild achiness to severe, debilitating pain that impairs mobility and quality of life.

What pain management options are available?

While lupus pain can be difficult to control, there are many options to help reduce pain and improve function:

NSAIDs – Non-steroidal anti-inflammatory drugs like ibuprofen help relieve swelling, pain, and fever.

Pain medication – Prescription analgesics or opiates can provide relief for severe pain.
Corticosteroids – Steroid medications like prednisone reduce inflammation and pain.
DMARDs – Disease-modifying antirheumatic drugs slow the progression of lupus.

Physical therapy – Stretches, exercise, and modalities like heat/ice therapy can help relieve muscle and joint pain.
Assistive devices – Braces, splints, or canes take pressure off painful joints.
Relaxation techniques – Massage, meditation, yoga, and cognitive behavioral therapy help with pain coping.

Healthy lifestyle – Eating an anti-inflammatory diet, staying active, reducing stress, and getting enough rest supports pain management.

Since lupus pain has so many sources, a multidisciplinary approach combining medications, physical modalities, and lifestyle changes often provides the best pain relief. Work closely with your rheumatologist to fine-tune your pain management plan. Tracking your symptoms and their response to different therapies helps determine what works best for your pain.

What role do medications play in managing lupus pain?

Prescription medications play an important role in reducing the inflammation and immune system dysfunction that causes lupus pain:

Non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen, naproxen, and aspirin reduce inflammation and joint swelling to relieve pain. They can cause stomach irritation with long-term use.
Corticosteroids like prednisone, methylprednisolone, and dexamethasone suppress the overactive immune system response in lupus to reduce widespread inflammation and pain. Extended steroid use has significant side effects.
Antimalarial drugs like hydroxychloroquine and chloroquine dampen immune system activity and control joint pain and skin rashes. Retinal eye exams are needed with these drugs.

Immunosuppressants like azathioprine, methotrexate, and mycophenolate mofetil lower the immune response and associated inflammation and pain. They raise infection risk.
Biologics like belimumab inhibit specific parts of the immune response. Newer biologics are being developed to target autoimmunity with fewer side effects.

Finding the most effective medication or combination of drugs is a balancing act weighing pain relief against side effects. Work closely with your rheumatologist to optimize your medical regimen for pain control.

When should you consider prescription pain medication for lupus?

Prescription pain medications like tramadol, codeine, hydrocodone, morphine, fentanyl, and oxycodone can provide relief when lupus pain is severe. These drugs should be used judiciously and as a last resort when:

Over-the-counter NSAIDs and other therapies don’t adequately control pain.
Pain significantly impairs your daily activities and quality of life.

You need help coping while waiting for DMARDs and other lupus treatments to take effect.
Pain prevents you from participating in physical therapy and exercise.
Severe pain causes depression, anxiety, sleeplessness, and reduced appetite.

The benefits of prescription pain medication must be carefully weighed against the risks of side effects and addiction potential. Work with pain management and addiction specialists to ensure appropriate prescribing and monitoring if using long-term pain medication for lupus.

What complementary therapies help with lupus pain?

Integrating complementary therapies with medical treatment offers a holistic approach to controlling lupus pain and improving quality of life:

Physical therapy uses stretches, exercise, heat/ice therapy, TENS, and massage to relieve joint and muscle pain.

Acupuncture can reduce pain and inflammation when needles are inserted at specific pressure points.
Massage helps relax tense muscles contributing to body aches and pain.
Meditation and yoga teach breathing and relaxation skills for coping with pain.

Cognitive behavioral therapy (CBT) provides tools to change negative thought patterns around pain.
Healthy eating emphasizes an anti-inflammatory diet high in omega-3s and antioxidants to reduce inflammation.
Exercise and rest help balance activity with recovery to avoid flares of joint pain.

Lifestyle changes like these complement medical treatment so you can function and feel your best day-to-day. Work with your healthcare team to integrate therapies that target your specific pain triggers and needs.

What self-care tips help manage lupus pain at home?

Taking an active role in your self-care at home makes a big difference in controlling lupus pain between doctor’s visits:

Use warm compresses and ice packs to ease muscle and joint aches.

Soak in an Epsom salt bath to relieve pain and stiffness.
Apply over-the-counter pain creams with menthol, capsaicin, or lidocaine.
Rest during flares of increased pain and fatigue.

Use braces, splints, or taping to support and stabilize painful joints.
Set up your workstation ergonomically to avoid neck, shoulder, and wrist pain.
Practice relaxation techniques like deep breathing, visualization, and progressive muscle relaxation.

Distract yourself from pain with activities like reading, puzzles, crafts, or watching movies.
Keep a symptom journal to discuss pain management strategies with your doctor.

Don’t underestimate the power of self-care. Even small comfort measures can make a difference in coping with chronic lupus pain when performed consistently.

How can your doctor best assess and treat your lupus pain?

To get optimal lupus pain treatment, be prepared for appointments with details your doctor needs:

Track pain in a symptom journal – Note pain levels, location, triggers, and timing. Also record what relieves or worsens pain.
List all medications and therapies tried – Include effectiveness, side effects, and any problems tolerating treatment.

Share how pain impacts your function – Is pain interfering with sleep, work, activity, mood, relationships, or quality of life?
Ask questions – Inquire about new medications, injections, complementary approaches, specialists, or additional testing if pain is uncontrolled.
Request referrals if needed – Ask for referrals to rheumatology, pain management, physical therapy, psychology, and other specialties.

Bring a support person to appointments to help discuss pain management options.

Advocating for your pain needs takes persistence, but is key to developing an effective treatment plan. Regular collaboration and communication with your healthcare team provides the best chance of relief.

When should you seek emergency help for severe lupus pain?

Most lupus pain can be managed on an outpatient basis. Seek emergency care if you experience:

Chest pain along with shortness of breath, which could signal lupus pericarditis or a heart attack
Sudden, severe headache or confusion, which could indicate a stroke
Severe new abdominal pain, possibly signaling pancreatitis or an intestinal obstruction

Unrelenting pain despite narcotic medication, as this could indicate serositis or end-organ damage
Fever over 100.4°F, which could signal an infection requiring prompt antibiotic treatment
Difficulty breathing or leg swelling indicating a blood clot in the lung or leg

Heavy bleeding or bruising associated with lupus-related blood disorders

Trust your instincts if you feel your pain symptoms are extreme or life-threatening. Urgent medical evaluation is needed to assess for serious complications of lupus requiring hospitalization.

What is the long-term outlook for controlling lupus pain?

The good news is that the pain of lupus can be managed in most people with a combination approach:

New biologic drugs are emerging that target immune dysfunction, which should improve pain control.
Better imaging and biomarkers allow earlier diagnosis before irreversible damage occurs.
More options exist for tailored treatment based on the mechanisms causing pain in each patient.

Multidisciplinary care teams have expertise in complementary pain therapies.
Support networks and online resources empower patients to self-advocate.

While lupus has no cure, most patients achieve adequate pain relief by working closely with their healthcare providers to adjust treatment as symptoms change. The course of lupus pain varies – it may last a lifetime, come and go, or eventually burn out completely. With a personalized treatment approach most people with lupus can manage pain to live full, active lives.

Conclusion

Lupus is a complex autoimmune condition that can cause debilitating joint and muscle pain. The keys are getting an accurate diagnosis, understanding what’s causing your specific pain symptoms, and working with your rheumatologist to develop a comprehensive pain management plan. It may take time and perseverance to find the right balance of medications, physical treatments, and lifestyle approaches to control pain. But most lupus patients can achieve enough pain relief to continue participating in the activities they enjoy. Don’t give up hope – with the expanding options for pain control, most people with lupus are able to live fulfilling lives despite the challenges of this disease.