The term “ankylosing spondylitis” (AS) may sound like a newly discovered dinosaur species, but in reality it’s a form of arthritis that attacks your spine.
So, while we wish we were talking about a prehistoric creature, we’re in fact covering a serious chronic pain condition. If you have AS, severe inflammation can cause your vertebrae to fuse, leading to mobility issues and other complications.
AS (also called axial spondyloarthritis, or axSpA) was originally thought to affect more men than women. But women are also affected — they’re just more likely to receive an incorrect diagnosis, especially if they’re negative for the HLA-B27 gene. The condition also tends to affect women differently than men.
Here, we take a look at what women need to know about this progressive condition with the prehistoric-sounding name.
AS affects both men and women, but women may experience different symptoms than men, which can complicate the diagnosis process. That means healthcare providers might misdiagnose the condition or take longer to pinpoint an accurate diagnosis.
Women may not receive a correct diagnosis
A 2019 study that looked at paths to diagnosis for 235 people with AS found that the condition was misdiagnosed more often in women than in men. Research suggests that as many as 25 percent of women who have AS don’t get an accurate diagnosis at first.
In women, AS is commonly mistaken for fibromyalgia, another chronic pain condition. But fibromyalgia can also coexist with AS.
Some women in these studies even received diagnoses of psychosomatic disorders (that’s basically a medical term for “it’s all in your head”). And you thought we weren’t talking about the prehistoric era! Some healthcare providers’ understanding of the condition hasn’t quite caught up to the present day.
If you have chronic pain and a doctor gaslights you about it, look for another provider.
Women may take longer than men to get a diagnosis
AS symptoms generally start to crop up between the ages of 20 and 40 for both men and women. But studies show that, on average, it takes women more than 2 years longer than men to receive a diagnosis.
This delay in diagnosis can actually affect the range of symptoms women with the condition tend to experience. Read: You might have a lot going on aside from back pain.
Women may have different symptoms than men
In addition to back discomfort, women with AS may experience more widespread pain, such as stiffness or aching in the arms and legs, than men do. Chronic pain can occur in many health conditions, so widespread pain that’s part of AS may be hard to diagnose, especially when symptoms first begin.
Research suggests that, in comparison to men, women with AS also have a higher prevalence of enthesitis — inflammation in the spots where tendons, ligaments, and joint capsules insert into bone. You might have pain along the back of your heel, for example, which could be mistaken for plantar fasciitis.
Women may have different X-rays and test results than men
AS in women can also appear differently on diagnostic tests at the doctor’s office. X-rays for women with AS often show less damage than those of men. Plus, women may have fewer markers of inflammation (such as C reactive protein and sedimentation rate) in their blood.
These differences in test results don’t mean women experience less impact from the condition. In fact, women often report more impairment and a greater change in quality of life due to AS in comparison to men.
Since the condition is progressive and doesn’t have a cure, getting a proper diagnosis and treatment is very important.
Although more research is needed, some studies suggest that hormones may play a role in the differing effects AS has on men and women. In particular, research suggests that estrogen, one of the two main female sex hormones, has an anti-inflammatory effect on the disease.
Researchers theorize that estrogen levels may be lower in people who have active AS than in those with inactive disease and that hormonal therapy may play a future role in treatment.
So what do you do when you have a condition with a dino-like name that sometimes makes you feel like your bones belong in a museum?
The ol’ motion-is-lotion wisdom applies to AS. But you don’t have to do deadlifts or box jumps (ouch!) to reap the benefits of movement.
Do what feels good to you, whether that’s gentle flow yoga, swimming, tai chi, walking your pooch, or just stretching while you’re going about your day.
A physical therapist can show you specific movements to help you build strength and maintain mobility while avoiding injury. An occupational therapist can help you with joint protection techniques or recommend assistive devices to try, if needed.
Avoid smoking or vaping
If you smoke or vape, ask your healthcare provider to help you find a way to quit that will work best for you.
Smoking causes inflammation, which can worsen AS symptoms (as well as any co-occurring health conditions). Smoking is also known to trigger the development of autoimmune diseases like rheumatoid arthritis.
Be kind to yourself
Managing a chronic condition can be complicated and exhausting to say the least. It can feel frustrating — or sometimes even upsetting. And it’s not as simple as eating well, sleeping well, and getting your exercise.
That’s why going easy on yourself is so important. Don’t beat yourself up for not getting your laundry done, for example. Try again another day. Restorative rest is important.
Ankylosing spondylitis, a form of arthritis that affects the spine, often impacts women differently than it does men. That’s one reason it often takes longer for women to get a diagnosis. AS can have similar characteristics to other chronic illnesses, and you may even have a coexisting inflammatory condition.
The bottom line is that if you’re having back pain or widespread joint and tendon pain, you should talk with your healthcare provider about your symptoms.
And if anyone tells you the pain is all in your head, head on out of their office and find another provider who doesn’t resort to prehistoric ways of thinking.