“Lene, you’re a neurological accident waiting to happen.”
My rheumatologist had ordered X-rays of my neck and the results showed that my rheumatoid arthritis (RA) had made the top joint unstable. This was how the doctor told me. They wrote an order for a CT scan to get more detail. Then I waited six weeks for the scan and another six for the results. Thankfully, the CT scan showed that the joint wasn’t in fact unstable.
I refer to those three months as the time my head was loose.
RA and spine joints
When it comes to the spine, RA can be either a pain in the butt or a pain in the neck. There is some disagreement in rheumatology about whether RA can affect the spine itself or if it should more accurately be called rheumatoid spondylitis, ankylosing spondylitis, or even osteoarthritis. However, there is agreement that RA can affect the two joints in the spine. One is the sacroiliac or SI joint. It is located below the lumbar portion of your spine and above the tail bone (coccyx). The second is the atlantoaxial joint between the C1 and C2 vertebrae. This joint is responsible for the movement of your head.
Most people with RA don’t think of the disease affecting their neck. However, some research suggests that it is quite common. “83% of patients in prospective studies developing anterior atlantoaxial subluxation within two years of disease onset." Other studies indicate that the numbers may not be quite as high, yet still significant.
Anterior atlantoaxial subluxation is a big and scary medical term. Essentially, it means difficulties rotating your neck. You may have noticed that some people with severe RA turn their upper body when looking to the side, rather than just their head. This means their neck has been damaged by RA.
Warning signs of severe RA neck involvement
And now we come to the scary part and unfortunately, there is no way around it. This is important information for you to know.
When RA affects the atlantoaxial joint, the resulting damage (erosion, bone spurs, etc.) can cause more than limitations in movement. It can render the joint unstable, which can be dangerous. Severe RA damage in the neck can cause pressure on the spinal cord, which has the potential for creating a spinal cord injury. However, this can be addressed. People whose top joint has become unstable can have surgery to fuse the top joint.
Symptoms can start with pain and stiffness of the neck, especially pain at the base of the skull. This can get worse if you look up or down for a long time and may feel better with rest. You should talk to your rheumatologist about the symptoms.
You may also experience neurological symptoms, such as tingling, weakness, and numbness in the arms, hands, and/or fingers, muscle spasms in the neck and shoulders, trouble walking, loss of balance, headaches, and grinding or popping sounds in the neck when you move. In such cases, contact your rheumatologist right away. They will likely give you a referral to a neurosurgeon for a consultation.
Taking care of your neck
Preventing the damage that can be caused by the inflammation of active RA is the best thing you can do to protect your neck and other joints. This is why your rheumatologist hands you a prescription for a DMARD medication when they make a diagnosis. Current medications have made it possible for many more people to achieve remission or low disease activity and, therefore, preventing damage. Even if you already have experienced some damage to joints, including the one in your neck, continuing to take medication may prevent further damage.
You may also want to consider asking your rheumatologist for baseline imaging tests. Getting an X-ray, CT, or MRI scan of your neck fairly early on will help you and your doctor track any potential changes to this area of your body. Should you experience pain or other symptoms, talk to your rheumatologist about updated scans to investigate the issue.
In your day-to-day life, limit activities that cause you pain. For instance, if looking down to read is a problem, consider using placing a pillow under your book, using audiobooks, or reading e-books on your computer. You may also want to talk to your rheumatologist about a referral to a physical therapist or an occupational therapist who may be able to help you with other techniques and devices, such as collars, that can help reduce the strain on your neck.
You should also be sure to avoid hyperextending your neck (bending forward or backward). This is especially important during sex, when feeling really good makes it hard to notice that you are moving your body to extremes. You should also avoid having a lot of pillows under your neck when you sleep. Again, speaking to a physical therapist may help you be more comfortable.
There are certain times when learning more about RA can make you feel very anxious. RA neck involvement is one of the aspects that can be scary. However, as with so many other parts of living with this disease, being forewarned is forearmed. Having this knowledge may help you take steps to prevent damage to your neck and other joints. Knowing what to look out for can help you address any potential issues right away.
If you are concerned about your neck or have symptoms of more serious involvement, talk to your rheumatologist.
What’s your experience with RA in your neck?
 Calleja, Michele, Hide Geoff, Rheumatoid Arthritis Spine Imaging. Medscape. emedicine.medscape.com/article/398955-overview (accessed April 7, 2015)
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Lene writes the award-winning blog The Seated View. She’s the author ofYour Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s 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. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.