“Anyone else suffering from neck pain and shoulder pain?” one MySpondylitisTeam member asked. Another said, “I have severe shoulder pain.” Ankylosing spondylitis (AS) most commonly causes back pain, but it can also lead to discomfort in other areas, which often surprises some people with the condition.

Read on to find out how common shoulder pain is among people with AS (also called radiographic axial spondyloarthritis, or r-axSpA) and what you can do about it.

How Is Ankylosing Spondylitis Linked to Shoulder Pain?

About 33 percent of people with ankylosing spondylitis have inflammation in the hips or shoulders. In fact, shoulder pain is often linked with AS-driven hip pain. The authors of one study even recommended that health care providers check the shoulders of anyone with AS who was already having pain in their hips to determine whether discomfort was in both locations.

Your shoulder pain may be on both sides or could affect just one shoulder. Although shoulder pain in AS is usually described as mild, it can interfere with the quality of life for those who experience it. One study of people with AS found that shoulder pain rarely led to disability in participants, but those who did have shoulder involvement had higher overall pain scores than people with AS who didn’t have shoulder symptoms.

Shoulder pain can start early in certain forms of AS that also affect other joints in the body. As the disease progresses, the pain can move into other joints, including the shoulders. This pain can occur months or years after diagnosis, depending on your level of disease activity.

Other Potential Causes of Shoulder Pain

Another potential cause of shoulder pain could be the development of adhesive capsulitis, also known as frozen shoulder. This condition is more common among those with AS than in the general population. It causes pain in the shoulder, as well as a reduced range of motion, which can strike quickly and get worse over several weeks or months.

In addition, you may experience shoulder pain due to enthesitis, which is the inflammation of an area where tendons or ligaments directly attach to the bone. Although this isn’t commonly an initial AS symptom, some people find that shoulder pain is the first symptom they ever experience to indicate that they have AS.

You may also have shoulder pain due to the way you hold your body to compensate for AS pain. Some people develop a hunched-over posture while living with AS, which can strain your other joints, including your shoulder. Others find that sitting for a long time can lead to an increased risk of side effects like shoulder pain, so they aim to get up and walk around frequently if they have to sit a lot for their jobs.

If you have shoulder pain while living with AS, talk to your rheumatologist to pinpoint the root cause so you can find the most effective treatment.

How To Manage Ankylosing Spondylitis Shoulder Pain

Choosing the right method of managing shoulder pain with AS depends on what’s causing it, which other treatments you’re taking, and your overall health. Your rheumatology provider can help you choose the best treatment method, which might include medications, home remedies, or even a regular exercise plan that can help ease your symptoms.

Home Remedies

If your shoulder pain isn’t severe, home remedies may help you. MySpondylitisTeam members have shared some of these methods:

• “I have pain between my shoulder blades and neck. Trying naproxen and a hot water bottle.”
• “I find heat and gentle stretches help.”
• “I was given a massage on my shoulder — it helped a bit.”
• “I swim four times a week and do self-care.”
• “Mindfulness training and deep breathing exercises really do help with pain relief.”
• “I had a hot stone massage and can’t recommend it enough. I’ve been pain-free in my neck, shoulders, and lower back.”

If you choose to try a massage, make sure you see a licensed massage therapist or physiologist who knows about your AS diagnosis so they understand which movements are safe and which aren’t. Specific exercises recommended by a specialist are very useful if done regularly. People with AS should exercise daily for their back pain and other joint involvements to maintain their mobility.

Medications

Your doctor will likely start your shoulder pain treatment plan by recommending over-the-counter pain relievers, such as the nonsteroidal anti-inflammatory drugs naproxen (Aleve) and ibuprofen (Advil). These NSAIDs can help relieve shoulder pain and reduce inflammation and pain, particularly if it’s mild or only strikes at certain times of the day.

If NSAIDs aren’t strong enough to help with shoulder pain, your provider might prescribe corticosteroids. These steroids can be taken by mouth or given through injections (shots) or infusions (drips). Your rheumatologist will decide how much you take, how the medication is given, and how often. Corticosteroids work quickly, but they have many side effects. Injections shouldn’t be given more than three or four times a year. Talk to your doctor about the specific treatment plan recommended by your rheumatologist.

“Had a shot in the shoulder, and I’m feeling pretty good for a change,” one MySpondylitisTeam member wrote. “My legs and feet are still in pain, but my shoulder feels good.”

Exploring different AS medications might be a good idea, as it could help with your pain by treating the spondylitis itself. These could include biologics (made from living cells), disease-modifying antirheumatic drugs (used for inflammation and joint pain), or other options based on how much pain relief you need, how often you have flare-ups, and your overall health. Talk to your health care provider to learn more about potential treatments.

Exercise

Although it may seem overwhelming to exercise when you’re already in pain, moving your body can help you manage your AS symptoms. By exercising, you can improve your range of motion, boost your flexibility, sleep better, maintain good posture, and reduce pain.

Talk to your rheumatologist about which types of exercises might work best for you. They may suggest you start with stretching exercises or that you consider gentle movements like walking, swimming, yoga, or tai chi. The National Axial Spondyloarthritis Society offers online exercises specifically designed for people with AS.

One study of people with AS found that participating in a yoga routine over two weeks led to better flexibility, reduced AS symptoms, and a reduction in the amount of pain medication needed.

Physical Therapy

Some people with shoulder pain from AS have success by taking part in a physical therapy program. By working with a physical therapist, you can perform targeted exercises and movements to build strength and increase flexibility in your shoulder joints.

“I finished physical therapy and feel pretty good,” one MySpondyltitisTeam member reported. Another said, “I’m having trouble with shoulder mobility and doing as much physical therapy as possible.”

Surgery for Ankylosing Spondylitis

Although surgery is rare as a treatment for AS, it may be recommended if your shoulder pain is severe or limiting your quality of life. If you have a frozen shoulder, arthritis in your shoulder, or another condition that can be addressed surgically, your health care provider may recommend that you get an operation that targets your specific diagnosis.

Deciding whether to have surgery for AS shoulder pain is a personal decision. Your rheumatologist can help you understand whether you might be a good candidate for surgery and can connect you with a surgeon who can answer questions about the procedure before you finalize your decision.

“I had a shoulder joint replacement,” one MySpondylitisTeam member wrote. Another replied, “My surgery was over two years ago now — I’m definitely thankful that I had it!”

Find Your Team

MySpondylitisTeam is the social network for people with spondylitis and their loved ones. On MySpondylitisTeam, more than 93,000 members come together to ask questions, give advice, and share their stories with others who understand life with ankylosing spondylitis.

Have you experienced shoulder pain while living with AS? How did you manage it? Comment below, or start a new conversation on MySpondylitisTeam.