What to know about this inflammatory back pain – and why it’s so important to see a doctor if you suspect you could have it
This CreakyJoints resource was made possible with the support of AbbVie.
Learning that your back pain may be ankylosing spondylitis (AS) — a type of inflammatory arthritis — may be confusing and scary. It can also be reassuring, as getting diagnosed can help you start on a treatment plan and begin to feel better. Here, rheumatologist Douglas Roberts, MD, creator of PainSpot, explains the basics of AS and why it’s key to get diagnosed as soon as possible. If you haven't already, take the PainSpot assessment to find out if you could have ankylosing spondylitis.
Ankylosing spondylitis (AS) is a type of arthritis that causes inflammation, pain, and stiffness most often in the spine and the joints above the tailbone where the spine connects with the pelvis — the sacroiliac joints. AS may affect other joints and parts of the body. AS occurs when your immune system is overactive and attacks healthy joints and tissues, causing inflammation. AS is not just some bothersome back pain — it is an inflammatory condition that needs to be treated.
In some people, AS can eventually cause bones in the spine to fuse, which can affect posture and cause permanent damage. There is no cure for AS, but treatment can help relieve symptoms and prevent them from getting worse.
AS is a subtype of axial spondylarthritis (axSpA), an umbrella term for inflammatory arthritis that primarily affects the spine and the sacroiliac joints. The other subtype of axSpA is non-radiographic axial spondylarthritis (nr-axSpA). It is similar to AS, but with nr-axSpA, damage to the spine or sacroiliac joints is not visible on an X-ray. With AS, you can usually see damage to these joints on an X-ray.
AS is an inflammatory disease. Pain is from inflammation in the joints of the spine, a result of the immune system attacking healthy tissue. This is different from mechanical pain, which is often from an injury, strain, or sprain. Inflammatory and mechanical back pain can have different symptoms and treatments. A doctor can help identify whether your pain is inflammatory or mechanical. Being aware of these subtle differences can help.
Begins gradually
Comes and goes
Feels better with exercise
Affects other areas of the body
Lasts longer than 3 months
Begins suddenly
Consistent
Feels better with rest
Stays in one area
Lasts a few weeks
In addition to back pain with distinct characteristics, AS may have additional symptoms that include:
Morning Stiffness in lower back and hips
Pain that wakes you in the middle of the night
Pain in peripheral joints (hip, ankle, elbow, knee, shoulder)
Pain in the ribcage when you exhale
Pain in the heel or foot
Diarrhea, bloating, or other GI symptoms (inflammatory bowel disease
Eye Redness and inflammation (uveitis)
Psoriasis
Fever
Fatigue
Morning stiffness in lower back and hips
Pain that wakes you in the middle of the night
Pain in peripheral joints (hip, ankle, elbow, knee, shoulder)
Pain in the jaw
Pain in the ribcage when you exhale
Pain in the heel or foot
Diarrhea, bloating, or other GI symptoms (inflammatory bowel disease)
Eye redness and inflammation (uveitis)
Psoriasis
Fever
Fatigue
* Not everyone with AS will experience all of these symptoms. They can vary a lot from person to person.
In addition to back pain with distinct characteristics, AS may have additional symptoms that include:
Morning stiffness in lower back and hips
Pain that wakes you in the middle of the night
Pain in peripheral joints (hip, ankle, elbow, knee, shoulder)
Pain in the jaw
Pain in the ribcage when you exhale
Pain in the heel or foot
Diarrhea, bloating, or other GI symptoms (inflammatory bowel disease)
Eye redness and inflammation (uveitis)
Psoriasis
Fever
Fatigue
* Not everyone with AS will experience all of these symptoms. They can vary a lot from person to person.
Morning Stiffness in lower back and hips
Pain that wakes you in the middle of the night
Pain in peripheral joints (hip, ankle, elbow, knee, shoulder)
Pain in the jaw
Pain in the ribcage when you exhale
Pain in the heel or foot
Diarrhea, bloating, or other GI symptoms (inflammatory bowel disease)
Eye Redness and inflammation (uveitis)
Psoriasis
Fever
Fatigue
* Not everyone with AS will experience all of these symptoms. They can vary a lot from person to person.
I wish I had known when I was younger that the "growing pains" in my knees that made me cry myself to sleep were actually an early symptom of spondylitis. I internalized chronic pain because I didn't want to be perceived as weak by my friends. Over time, I hid a lot of additional symptoms that popped up for the same reason. My diagnosis was delayed 13+ years because of that shame and expected stigma, as well as because I was socialized as a girl, and girls “don't get spondylitis,” which I know now is wrong!
I wish I had known that AS was going to be serious. I was young when I was diagnosed. My doctor didn’t make a big deal about it, and I wasn't given treatment, so I just kinda ignored it, thinking it was just some aches and pains. Most importantly, I didn’t go to a rheumatologist for the first 15 to 20 years of having my diagnosis. Now I wish I had sought treatment sooner. I could have gotten ahead of my AS; now I’m trying to catch up.
I saw a medical provider in college and was diagnosed with ankylosing spondylitis. But due to some frustrations with insurance and my own stubbornness, I did not see a rheumatologist for nearly nine years. Eventually, AS caught up with me. I had a significant flare that caused me to seek the care of a rheumatologist. While it was great that I was able to manage my pain and have a “normal” life for those years, I missed out on valuable treatment. Imaging showed that I had fusion in my left sacroiliac (SI) joint that was not present before. Basically — do not be me.
Learning you have an incurable and degenerative disease affects your mental health. Recognize this and pay as much attention to your mental health as you do physical health. Support from family and friends will help immensely. Reaching out to groups and communities online can be a helpful too. Being scared, worried, and frightened is common — if not ubiquitous — when you first get diagnosed. I won’t lie; it’s not a fun time. But with treatment and support it gets better.
I wish I had known that you don't have to be HLA-B27 positive to have AS. There is no single test to prove you have AS, but I went undiagnosed for decades — despite my symptoms — because my doctors thought you had to have the HLA-B27 marker to have AS.
I wish I had known that there is no one way that AS presents itself. Like most chronic diseases, there is no one-size-fits-all diagnosis; how my condition presents may be different from the way someone else’s does. I wish I had known how common it is. AS is not a rare disease. It is not a ‘man’s disease,’ even though misinformation and a lack of awareness are still a consistent barrier to diagnosis and treatment.
It can take some patients up to 10 or more years to get diagnosed after symptoms start. If you’re worried you might have AS, see your primary care doctor for an initial evaluation and to determine whether they recommend seeing a rheumatologist for further testing.
When you’re in pain or feel sick, often the first person you turn to is your primary care physician. A primary care doctor helps manage a wide variety of general health needs, both routine and unexpected. Your primary care physician can review your symptoms, do initial testing and evaluation, and advise whether you need to see a specialist like a rheumatologist.
A rheumatologist is a doctor who specializes in treating musculoskeletal disease and systemic autoimmune and inflammatory conditions that affect the joints, muscles, and bones. Rheumatologists are specialized in the diagnosis and treatment of systemic autoimmune and inflammatory arthritis, including AS. Because of their specialized training, rheumatologists have a deep understanding of the role of inflammation in AS and how to manage it.
There’s no single test that confirms whether or not you could have ankylosing spondylitis. Here, rheumatologist Douglas Roberts, MD, explains what rheumatologists look for when considering an AS diagnosis.
Ankylosing spondylitis can be tricky to diagnose. To figure out what’s causing your symptoms and whether or not you could have AS, your doctor will likely consider the following areas. The more information you can supply your doctor about your symptoms and medical history, the better.
Your doctor will ask about your symptoms to assess whether your back pain is mechanical or inflammatory. They might ask you about the onset of your symptoms, when they get better or worse, if you have other inflammatory conditions, and if there is a family history of relatives with AS or AS-like back pain.
Your doctor will be looking for signs of inflammation, tenderness, and limited range of motion in your spine and other joints. They may physically feel for tenderness in certain joints and places around your body, including the sacroiliac joints by your pelvis, your Achilles tendon at your heel, and your knees. They may conduct a variety of physical tests, such as:
Ask you to bend forward to see the flexibility of your lower back.
Have you stand with your back flat against a wall to measure the flexibility of different parts of your spine and neck.
Measure how far your chest can expand when you exhale.
Your doctor may order different blood tests for a more complete picture of AS risk factors. Some include:
HLA-B27 genetic marker: This genetic marker is strongly associated with the development of AS. However, a positive HLA-B27 status isn’t required to diagnose AS.
Erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) are blood tests that can demonstrate levels of systemic inflammation in the body.
Rheumatoid factor (associated with RA) or antinuclear antibodies (associated with lupus) may be ordered to help rule out other conditions.
X-rays and MRIs are common imaging tests used to help diagnose AS.
An X-ray allows your doctor to see your bones and joints to look for signs of fusing or damage. There might be widening of the sacroiliac joints, erosion of the bone, or whitening of the bone. In more advanced disease, the SI joints can be fused so the joint space will no longer be apparent.
An MRI sends radio waves through your body to produce images of your body’s soft tissues. There can be swelling in the bone marrow of the SI joints on MRI. Widening of the joints and erosions in the bone from inflammation can also be seen on MRI.
Seeing a rheumatologist can be challenging, particularly for pediatric patients and people outside of metropolitan cities. It is so important to find a doctor who has experience in the spondyloarthropathies. Before I was able to see a provider familiar with AS, I was misdiagnosed with other conditions and was told that my pain and suffering was all in my head. Unfortunately, this is erasure is all too common, especially for women and Black, Indigenous, and People of Color (BIPOC) patients. A doctor who validates your symptoms and experiences can make a huge difference in the ability to cope with pain.
Get educated about what AS is and isn't, so that you can have an informed meeting with your doctor. Be prepared to discuss any relevant family history and symptoms. An AS diagnosis is a puzzle that must be put together, so do what you can to advocate for yourself.
Don't do it alone. Ask a loved one to help you navigate the journey, including attending appointments with you. They can provide moral support and help you remember what doctors say. They will also learn about the disease alongside you and can help explain spondylitis to others so that you don't have to spend the energy.
Make sure you’re prepared for doctor’s appointments. Write down all your symptoms, along with what makes them better and worse. Include frequency and severity. Write down questions ahead of time. There’s going to be a lot of information in your early appointments, and it will be overwhelming. Writing important information ahead of time helps reduce the chances that you forget to tell the doctor something because of the stress and anxiety that comes with the situation.
Don’t let yourself come up with excuses for not seeing a doctor. There are so many reasons we do this, especially women. ‘Ankylosing spondylitis is a man’s disease.’ ‘Oh, that back pain is from doing too much in the yard a month ago.’ ‘My running gait is still off? Must be from carrying the baby on that hip.’ Stop it! It could very well be something very simple, but the issues could be something way more serious.
Do your research. AS can be hard to diagnose. Far too many people go in with AS pain and walk out with a diagnosis of fibromyalgia, something else, or nothing at all. Learn the symptoms of AS and make notes about which ones you have. AS is not always on the forefront of a doctor's mind, so you may need to suggest it and show evidence. Be an active patient and take the reins of your diagnosis process.
Because AS symptoms can start gradually and may be mistaken for other health problems, it can typically take a long time to get diagnosed. Once you have an appointment with a rheumatologist, the following tips can help you get ready. Preparing in advance can help your appointment run smoothly and ensure you have time to address all your concerns.
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