MySpondylitisTeam members often discuss neck pain. “Have any of you guys had neck problems along with your spondylitis?” asked one member. “My neck pain has been excruciating.” Another member answered, “Yes, I am having the same. Very stiff, and I have to exercise it almost all day long. My doctor said it’s part of the disease.”
Among MySpondylitisTeam members, about 400 males have reported neck pain as a symptom, compared to more than 2,300 females. Studies also show women with spondylitis report neck pain more often than their male counterparts. Neck pain is only one possible symptom of spondylitis, but it may play a role in diagnostic delays, especially for women.
Spondyloarthritis (SpA) — also called spondylitis — is a type of inflammatory arthritis that includes a group of related and overlapping conditions that can cause inflammatory back pain, joint pain, stiffness, and damage in the spine and joints. One type of spondyloarthritis, axial spondyloarthritis (axSpA), affects the spine and sacroiliac joints that connect the spine and pelvis. Radiographic axial spondyloarthritis — also known as ankylosing spondylitis (AS) — is visible on X-rays, whereas nonradiographic axial spondyloarthritis isn’t.
Spondylitis has several subtypes and is associated with other health conditions. Peripheral spondyloarthritis affects joints and tendons throughout the hands, arms, legs, and feet. The condition is linked to inflammation in the eye (anterior uveitis), and it can be associated with psoriasis and inflammatory bowel disease. Psoriatic arthritis, enteropathic arthritis, and reactive arthritis are all considered types of spondyloarthritis.
Spondylitis can show up in different ways in women versus men. According to one study on people first presenting with SpA, women reported a higher prevalence of neck pain (5 percent greater) than men. Women also reported neck pain as their main symptom 6 percent more often than men.
Although women with axSpA show more signs of progressive damage to the cervical vertebrae — the vertebrae in the neck — in X-rays than men, radiographic damage to the cervical spine is not a routine assessment for an axSpA diagnosis. As a result, women with neck pain and even those with signs of damage on X-rays may not be properly assessed for axSpA.
In recent years, MRI has become the standard for assessing damage from AS. One study suggested that MRI should play a larger role in identifying damage to the craniocervical junction (CCJ), a joint between the spine and cranium that can cause neck pain with AS. The CCJ is not typically assessed for a diagnosis of AS, despite the fact that MRI can be used to identify AS inflammation in the CCJ.
Due to a lingering misconception that axSpA primarily affects men, research on the condition has not included nearly as many women as men. Perhaps because scientists understand less about axSpA in women than in men, women are underdiagnosed. Women with axSpA have an increased risk of longer delays in diagnosis, greater disease activity, and less effective treatment, all of which can contribute to a higher disease burden. Scientific studies need to include women at higher rates to better assess symptoms such as neck pain that may indicate axSpA.
According to a meta-analysis of numerous studies, women are, on average, diagnosed with axSpA two years later than men. A 2020 study found that one reason women are more likely to receive diagnostic delays with axSpA is because they show signs of lower back lumbar spine damage more slowly than men, and lumbar damage is more commonly associated with axSpA than neck pain. Men are also more likely to test positive for HLA-B27, the gene that is associated with AS.
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Likewise, misdiagnosis is common among people with axSpA, but it occurs at a much higher rate among women. According to one study, women with ankylosing spondylitis were much more likely than men to be misdiagnosed with fibromyalgia and psychosomatic problems. Reporting neck pain — as opposed to low back pain — when initially seeking medical care was also linked to a delayed diagnosis for women with AS.
Studies show that women in pain struggle to be taken seriously by their doctors. This can reduce quality of life and make it harder to manage pain with SpA. Be sure you are communicating openly with your rheumatologist and health care providers if you have ongoing neck pain, particularly if you do not have a diagnosis for the cause of your pain.
“Get online and find all the info you can find about neck pain and treatments for it. Make copies of what you find and take them to your next doctor. They tend to take you more seriously when they see you have done your homework on the subject,” said one MySpondylitisTeam member.
Treatment options for SpA include:
Watch rheumatologist Dr. Ashira Blazer talk about meditation techniques that can help ease spondylitis symptoms.
Other members have offered tips on managing neck pain with SpA. “A heating pad is a lifesaver,” wrote one member. Another member said, “I take magnesium to help with cramping in my neck. Sometimes it interacts with other meds, so I take it two hours apart from my other meds.”
“I have a gel ice pack tied around my neck most of the time,” one member wrote. Another member recommended, “Try Biofreeze.”
Always speak with your doctor before taking nutritional supplements. Some herbal or vitamin products can cause dangerous interactions with other medications you take.
MySpondylitisTeam is the social network for people with spondylitis and their loved ones. Here, more than 83,000 members come together to ask questions, give advice, and share their stories with others who understand life with spondyloarthritis.
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