MyLupusTeam members often try to pinpoint the source of their aches and pains, wondering if these issues might be symptoms of lupus.

One member asked, “Have you ever had pain around your collarbone area? I have terrible pain, sometimes on one side or both, but it’s always there. Ibuprofen helps. I don’t think it’s a fracture because I haven’t fallen or anything.”

Others have shared similar experiences, “Does anyone have inflammation or joint pain in the shoulder?” and “Does anyone feel like there are 10-pound weights on their shoulders?”

Here, we’ll go over some key facts about shoulder and collarbone pain in people living with lupus.

What Does Lupus Shoulder Pain Feel Like?

Members of MyLupusTeam describe how shoulder pain affects their daily lives:

• “The pain is beginning to radiate down my arm from my shoulder and neck, making it difficult for me to complete everyday tasks. I’m starting to feel frustrated and sad about it.”
• “My right shoulder blade is hurting. I’m right-handed, so it makes it hard to do things around the house, to sleep and to type. It’s hard to raise my right arm. It even hurts to take a deep breath.”
• “The shoulder blade pain is nauseating.”

What To Know About Shoulder Pain With Lupus

Collarbone and shoulder blade pain may be related to lupus, but they’re not necessarily lupus symptoms. Learn more about this type of pain and the possible underlying causes so you can better understand why you may be feeling it and how to find relief.

1. Lupus Pain Differs From Arthritis Symptoms

Shoulder pain may come from lupus joint symptoms. About 95 percent of people with lupus experience joint problems. The shoulders are often affected, along with the knees, elbows, fingers, and toes.

The most common joint issues in lupus are polyarthralgia (joint pain in five or more joints) and polyarthritis (arthritis in five more joints). Many people with lupus develop arthritis, but you can also have joint pain that isn’t caused by arthritis.

Lupus raises inflammation levels throughout the body, which often affects the joints. Arthritis, however, can be caused by inflammation, wear and tear on the joints, or injuries. It’s important for your rheumatologist to identify the exact cause so you can get the right treatment.

People with lupus often feel stiff in the morning, and a warm shower can help loosen their joints. Medications that may help with lupus-related joint problems include nonsteroidal anti-inflammatory drugs (NSAIDs), antimalarial drugs, steroids, and immunosuppressive drugs.

2. Lupus Symptoms Can Include Tendinitis

Tendons connect muscles to bones. Lupus can cause inflammation in these tissues — a condition called tendinitis that can affect different parts of the body. When tendinitis affects the shoulder tendons, it can cause pain, soreness, and tenderness that may limit your movement.

Repetitive movements or putting too much stress on a tendon can increase your risk of tendinitis, especially in sports or physical jobs. To protect your tendons, warm up before exercising, train gradually, and work on building strength and flexibility over time.

Your healthcare provider can examine your shoulder for signs of tendinitis. They may recommend the traditional RICE method:

• Rest
• Ice
• Compress
• Elevate

Over-the-counter pain medication can also help, but always check with your doctor before taking new medications or supplements.

3. Fibromyalgia Could Be To Blame

Some researchers estimate that 20 percent of people with systemic lupus erythematosus (SLE), the most common type of lupus, have fibromyalgia. In comparison, up to 5 percent of the general population has fibromyalgia.

Fibromyalgia causes widespread pain throughout the body and increases your sensitivity to pain.

Although fibromyalgia isn’t directly linked to collarbone or shoulder pain, it can make discomfort from other causes feel more intense.

Fortunately, there are ways to manage fibromyalgia and improve your quality of life through lifestyle changes, mental health support, and treatment options recommended by your doctor.

4. Steroids May Cause Avascular Necrosis

Many people with lupus take steroid medications to reduce inflammation, especially during lupus flare-ups. However, steroids can cause side effects, particularly when taken in high doses over long periods. One possible side effect is avascular necrosis, which happens when blood flow to a bone is reduced or blocked. Without enough blood, pressure builds up inside the bone, weakening it and causing bone tissue to die.

Avascular necrosis often affects the shoulders, knees, or hips and can lead to stiff muscles and muscle spasms. If you have avascular necrosis and it limits your mobility or causes pain, your doctor may recommend surgery as treatment.

5. Rotator Cuffs Are Prone to Injury

The shoulder joint works like a ball in a socket, and the rotator cuff — a group of four muscles and tendons — helps keep the shoulder joint stable and rotating smoothly. Rotator cuff injuries are a common cause of shoulder pain, even for people without lupus. Each year, about two million people in the United States experience this type of injury, according to the American Academy of Orthopaedic Surgeons.

You may be more likely to injure your rotator cuff if you:

• Are over age 40
• Do repetitive lifting or overhead activities (like tennis, swimming, or painting)
• Have had a shoulder injury

To diagnose a rotator cuff tear, your doctor will test your arm strength and range of motion. They may confirm the diagnosis with imaging tests such as an X-ray, MRI, or ultrasound.

If you suspect a rotator cuff tear, see your doctor as soon as possible. Without treatment, tears can get worse over time. In most cases, rest, physical therapy, and medication are enough to allow the shoulder to heal. However, studies show that people with autoimmune connective tissue diseases like SLE may have a higher risk of needing surgery to repair rotator cuff injuries. Controlling inflammation may also support healing.

6. Chest Pain Must Be Taken Seriously

If your collarbone pain feels like chest pain, contact your healthcare provider right away. According to Cleveland Clinic, in the United States, someone has a heart attack every 40 seconds. It’s important to let a medical professional determine whether chest pain is related to a heart attack or another cause.

Seek medical help immediately if the pain starts suddenly, feels like pressure or fullness in your chest, or doesn’t go away after a few minutes. Heart attack symptoms can include:

• Shortness of breath
• Dizziness
• Racing heart rate
• Cold sweats
• A feeling of fullness, like there’s a balloon expanding in your chest

Luckily, not all chest pain means you’re having a heart attack. In fact, most people who go to the emergency room for chest pain aren’t experiencing a life-threatening heart problem.

Other possible causes of chest pain include:

• Acid reflux or heartburn
• Asthma
• A blood clot in the lungs
• Pneumonia
• A pulled muscle in the chest wall
• Inflammation of the rib cartilage
• A rib injury
• Shingles

Even if you’re not having a heart attack, you still need medical attention. When you’re living with lupus, it’s important to take any new symptoms seriously and get them checked promptly.

7. Referred Pain May Be Coming From Somewhere Else

Sometimes, the pain you feel in your shoulder or collarbone actually comes from another part of your body. For example, inflammation in the gallbladder or irritation of the diaphragm can cause pain that’s felt in the shoulder area.

Certain conditions, like pericarditis (inflammation of the tissue surrounding the heart), can cause fluid buildup and lead to pain in the left shoulder. Because lupus can affect many organs, it’s best to let your rheumatologist rule out these possibilities before assuming your pain is muscular or joint-related.

When To See a Doctor

Contact your doctor or rheumatologist if:

• You have collarbone or shoulder pain that limits your movement.
• You notice swelling or fluid buildup.
• The pain gets worse over time.

Always talk to a doctor right away if you think your pain could be serious, such as chest pain that might signal a heart attack, or if your pain comes with new symptoms like fever or weight loss. Getting checked early can help you feel better and prevent complications.

Join the Conversation

On MyLupusTeam, people share their experiences with lupus, get advice, and find support from others who understand.

Do you experience pain in your shoulder or collarbone with lupus? Let others know in the comments below.