When Your RA Is an Actual Pain in the Neck

by Lene Andersen, MSW Patient Advocate

“Lene, you’re a neurological accident waiting to happen.”

X-rays had indicated that my rheumatoid arthritis (RA) may be making the joint that connects my spine to my skull unstable. And that's really the last place you want instability: Damage there could lead to a serious spinal-cord injury or worse. Fortunately, a CT scan revealed that I wasn't in danger, but in my research I learned that 8 out of 10 people with RA have some sort of neck problem. They're not all life-threatening, but they are issues we need to know about.

man touching back of his neck

The Early Signs of Neck RA

Within the first few years of having RA, many patients show changes to the top joint of the neck, which is responsible for moving your head. This early on, instability isn’t likely, but you may have pain and stiffness, especially at the base of the skull. It often feels worse if you look up or down for a long time, and rest can make it feel better. You might also have a hard time turning your head from side to side.

Why Neck Inflammation Can Be Dangerous

When RA inflammation affects a joint, it can cause bone erosions and slackness in ligaments. In the neck, this can lead to instability between the first and second vertebrae (the atlantoaxial joint) as well as alignment problems when you tilt your head forward or back. If it progresses, the nerves may get impinged, which can lead to weakness and numbness in extremities, says Rajat Bhatt, M.D., a rheumatologist at Memorial Hermann Katy Hospital in Richmond, TX. Severe instability can also lead to compression of the spinal cord, which can be fatal. Fortunately, surgery to fuse the joint can eliminate the risk (more on this later).

x-rays of cervical spine

Why Early Testing Is Key

As early as possible, talk to your rheumatologist about getting baseline images of your neck and other joints to track any changes especially flexion and extension views of the neck to look for instability. This is an important part of checking whether your treatment is working and whether your RA is progressing. This matters in all of your joints, but because the top neck joint can be so vulnerable, monitoring it is essential. Should you develop pain or other symptoms, talk to your rheumatologist about having new scans to check what’s going on.

woman injecting medicine into stomach

How Meds Can Help

Aggressively treating active RA inflammation is the best thing you can do to protect your neck and other joints. “Treatment can help prevent cervical (neck) vertebra involvement in the future,” says Dr. Bhatt, which is why your doctor writes a prescription for a DMARD medication when you get an RA diagnosis. These medications suppress RA inflammation, protecting your body from damage. Medications called biologics have made it possible for many more people to achieve remission or low-disease activity. Even if you already have experienced some damage to joints, including the one in your neck, continuing treatment may prevent problems in the future.

What to Do if Your Neck Already Hurts

If you start having pain and stiffness in your neck, talk to your rheumatologist. Usually, your doctor will be conservative in treating the symptoms, using medication to control your RA, a neck collar for support, and physical and occupational therapy. Having neck pain can also make your shoulders and back really tense, increasing discomfort. Massage can help, but make sure you tell the massage therapist that you have RA in your neck, so she's careful to work only on your muscles.

Which Symptoms You Should Never Ignore

Make an appointment with your rheumatologist right away if you start having neurological symptoms, like tingling, weakness, and numbness in your arms, hands, or fingers. Also call if you have muscle spasms in the neck and shoulders, trouble walking, loss of balance, headaches, and grinding or popping sounds when you move your head. If imaging tests show instability, the next step is a referral to a neurosurgeon for possible neck-fusion surgery. If you are scheduled for any other surgery prior to that procedure, Dr. Bhatt recommends you contact your rheumatologist so he can consult with that team. The way your neck is moved during anesthesia can damage an RA-affected joint.

couple under covers in bed

How to Avoid Neck Strain During Sex and Sleep

The natural pain-killing powers of an endorphin rush during sex can actually help your RA. But while you’re temporarily feeling less pain, you might push your body past its boundaries. To prevent hyperextending your neck during sex, try to resist the tendency to throw your head forward or back during orgasm. You'll also want to invest in a good pillow. The right type of pillow—ask your physical or occupational therapist for a recommendation—can also prevent morning neck stiffness after a good night’s rest.

Tips for Easier Reading

When does your neck hurt the most? If it’s after reading, try propping your book on a pillow or use a lightweight e-reader that you can hold at eye level to avoid bending your neck down for long periods. Try doing more work at the computer instead of on your phone—all that hunching over can lead to a case of text neck. And ask your rheumatologist for a referral to an occupational therapist who can help make adjustments to your workstation or suggest other neck-saving tools.

woman looking anxious reading phone

Keeping Perspective

There are times when learning more about RA can make you feel anxious. Learning about how your condition can affect your neck is one of those times. As with so many other parts of living with this disease, information is power. Knowledge can help you take steps to prevent damage to your neck and other joints or prompt you to talk to your rheumatologist about how to keep your neck in good condition for years to come.

Lene  Andersen, MSW
Meet Our Writer
Lene Andersen, MSW

Lene Andersen is an author, health and disability advocate, and photographer living in Toronto. Lene (pronounced Lena) has lived with rheumatoid arthritis since she was four years old and uses her experience to help others with chronic illness. She has written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Lene serves on HealthCentral's Health Advocates Advisory Board, and is a Social Ambassador for the RAHealthCentral on Facebook page, facebook.com/rahealthcentral. She is also one of HealthCentral's Live Bold, Live Now heroes — watch her incredible journey of living with RA.