She's one of only a few rheumatologists in the United States who also has ankylosing spondylitis or AS. Hillary Norton, M.D., of Santa Fe, NM, has made it her mission to demystify her condition—a type of arthritis that primarily affects the spine. When it comes to empathy for her AS patients, Dr. Norton, a medical director at Santa Fe Rheumatology, has plenty, along with the most current knowledge about what it takes to manage this condition successfully. We asked Dr. Norton, who's lived with AS for more than a decade, about the ins and outs of working with a patient base that has many of the same symptoms and needs as she does, and what she’s learned along the way.

Dr. Norton Bio Image

DR Norton Bio

## What were things like for you before being diagnosed with AS?

I was in my late 20s and not yet in medical school. I was working on a master's degree, doing pre-med courses in preparation for school. I also knew something wasn't right, but in the beginning phases, the pain would come and go, and didn't happen on a consistent enough basis to cause me to really do anything about it. In the daytime, once I was moving around and becoming active, the pain would go away. 

I'd awaken at night with back pain that was pretty severe, and I knew the only way to relieve it would be to move—but then I had difficulty moving. This went on for a few years. At first, it was intermittent, but as the disease progressed, I was in pain every night. Finally, it limited my ability to stay in bed. At first, I could sleep until 4 or 5 a.m., but then that became 3 a.m., and then 2 a.m., and eventually, I could sleep for only about two hours and then I had to be in an upright position.

Sometimes it could take me 15 minutes to be able to turn over, and once I did, I knew I could get another hour or two of sleep. 

Like other undiagnosed AS patients, I'd go on the internet to search my symptoms, and I'd see information about chronic illness and disease. I'd skip that whole section because I thought, "I don't have a chronic disease," and as it turned out, I was missing the correct diagnosis from the beginning. I thought, "I'm a young, healthy, active person who just has a back issue." 

I saw a sports-medicine doctor who thought it must be something related to athletic activity, which at that time was trail running, riding a mountain bike, and swimming. Like others, I was misdiagnosed with a mechanical back issue, usually caused by excessive or repetitive strain on the back—and was sent to physical therapy. That all began a complicated journey and delay that ultimately meant I wasn't diagnosed until 10 years after my symptoms first started. 

Rounds of physical therapy (PT) didn't help. I did weeks of it, several appointments, as often as I could—it was difficult while in medical school. Later, I was sent to PT again for what was diagnosed as a weight-lifting injury in my shoulder—I know now it was actually AS—and I did several more sessions then. 

I tried to go on with life. I certainly wasn't looking for a diagnosis of anything chronic, and honestly, if there was a chance to ignore my symptoms, I did that.

## At what point did you realize that this was not run-of-the-mill back pain?

On the first day of my internship at the University of New Mexico, July 1, 2007, and on a 30-hour shift with a lot of stress involved, I developed inflammation in my left eye. When I had to go outside, the light shining on my eye caused terrible pain. My supervising resident thought I might have [uveitis](https://www.healthcentral.com/slideshow/possible-complications-of-ankylosing-spondylitis)—when the anterior or front of the eye gets inflamed—and called an ophthalmologist in on an emergency basis. That doctor examined me and asked me if I ever had any back pain. I said I'd had horrible pain for about 10 years and I still wasn't sure what the connection was. He said, "You need to see a rheumatologist." 

## And when you did, what happened next?

When I saw that rheumatologist, she asked about other tests, my family history, a physical exam was done, and x-rays were ordered. My blood work showed that I had the HLA-B27 gene, a risk factor for ankylosing spondylitis.

## How did your rheumatologist explain the HLA-B27 gene?

Some people have the gene and no disease associated with it. When it functions well, the gene instructs a protein to be made on white blood cell surfaces that helps to differentiate between the body's own cells and foreign invaders—like an infection. It's not known how HLA-B27 confers risk of AS, and there are multiple theories.

You can have the gene and have no AS, but more than 90% of patients with AS have the gene. Used in the context of someone who has inflammatory back pain, it can be very helpful in diagnosis. People can also be [diagnosed with AS](https://www.healthcentral.com/condition/ankylosing-spondylitis-tests-diagnosis) and not have HLA-B27. Again, it's important that we interpret the test with other clinical information that we gather, to come to a correct diagnosis. And remember, this is not a simple diagnosis; there is no one single test for AS. That's why it's so complicated and why so many patients are missed.

## What did you think when you finally received your official AS diagnosis?

On one hand, I thought it was good to have answers about my symptoms after wondering what was wrong for so many years. But quickly I moved on to: "I don’t want to embrace being a patient with a chronic illness," and that's where my next struggle began. Not wanting to embrace the diagnosis led to a delay in treatment for me—another five years. 

I was doing my residency in internal medicine, and then my fellowship in rheumatology. I was living with a lot of pain and sleep deprivation, but I was trying to treat my disease with exercise and yoga. 

## How did you approach treatment and particularly the issue of taking a biologic?

In hindsight, if I had known what my life was going to be like after starting a biologic, I would have started sooner. Biologics are genetically engineered proteins that target specific inflammatory molecules in the immune system. Doing that would have allowed me to get back to normal life sooner. I took a TNF inhibitor, which was the only class of biologics approved to treat AS at that time. 

I do understand that, for a young person, when we talk about starting a significant treatment, there can be a lot of reasons to hesitate. I wish someone had told me everything is just a trial, and that this is not a permanent commitment. If it's a great fit for you, you'll want to continue. It's about getting past the hurdle of having a chronic illness and going on a medication medium- to long-term. That was a hard thing for me.

## How did you feel once you started the medication? 

I was fortunate in that I had a dramatic response to medication. It was like turning back the clock. I slept until the sun was out, and I got out of bed on my own for the first time in years. It sounds a little weird, but it felt as if a ghost finally left my body. I'm so grateful that I had this response. Medication has allowed me to be myself again.  
## Why does it take so long for people to get diagnosed in general? 

The average time for diagnosis is 7 to 10 years. This is an invisible disease and the primary symptom is back pain. Most people have back pain at some point in their lives, the disease comes on at a young age—usually the mid 20s—and initially many patients don't seek treatment for that. I was one of those. People may think it's something they did during their workout, and if they do seek treatment, it's often from a chiropractor, or like me, from a sports medicine physician, or it can be from a number of different providers. The last thing they're thinking is that this could be a chronic disease. 

Also, AS is under-recognized by many providers, further delaying a referral to the rheumatologist. To help others avoid the long road to diagnosis that I experienced, I really try to raise awareness about unexplained back pain that could be AS.

## Did you share your diagnosis with your boss or colleagues and how did they react?

In the medical-training environment, most of the time you really don't want to show vulnerability to peers. Having a medical issue while in residency is not something you want to be forthcoming about. I tended to keep to myself, to cope with it, not talking. People would say, "I heard you injured your knee or ankle," and I would smile and nod and keep going. I didn’t want to tell anyone about being diagnosed with something chronic.

## When you did discuss it, what kinds of responses did you get? 

As surprising as this sounds, even physicians in other specialty areas would say, "Well, you can't have AS because it's a disease of men." That's another example of how AS is just not well understood, how much misinformation was—and still is—out there. Earlier studies showed more disease in men, but more recent studies show the ratio of men to women has declined.

There was one time during training when I confided in someone and the response was just not supportive. That person said something like, "Your SI (sacroiliac joint, where the lower spine and pelvis join) is going to fuse and you can live with that, so don't make a big deal about this." 

They were talking about my AS diagnosis!

That response lit a fire under me to go into treating AS as a specialty in my practice, and to raise awareness so other people didn't hear that same response

## How does having AS impact your approach to patient care now?

I think I have a unique perspective and ability to really understand what patients are going through. During my own journey, I've discovered how misunderstood this disease really is. That's something you can't learn completely from a textbook.

I think we all have different comfort levels about what symptoms we're willing to live with before we accept treatment. I do know now that without treatment, there was a 100% chance my disease was going to significantly impact my life. To the extent my career was in jeopardy, it took me getting to a pretty bad place in terms of symptoms before I was willing to accept that.

I was having difficulty walking. I couldn't go up and down stairs and had to take an elevator. I saw a wheelchair in my future.

I was very fortunate that I responded so well to treatment. I've sat on both sides of the issue of how disease can impact you and what treatment can do for you.

## What do you always tell patients that are just diagnosed with AS?

There are three things I tell them: 

- __Know you are not alone.__ An invisible disease can be very isolating and even people close to us may not understand what we're going through—we can look perfectly healthy during the day. 

- __Be kind to yourself.__ I do this, too: When we have flare-ups, we ask ourselves, "What did I do to cause this?" There are things we can do positively with our lifestyle choices, like managing sleep, our routine, exercising, eating a healthy diet, and of course, not smoking. But, this is a disease we can’t control all the time. 

- __Be hopeful and positive.__ There are some really good treatment options and only more to come. 

## Of all the new AS treatments in the works, which ones are you most excited about?

There are a number of things, actually. We do clinical trials in my office, and I would say there are exciting treatments in the pipeline, both with biologics and small molecules, that are coming and are very helpful. Small molecules are a newer class of medications being used in rheumatic diseases. They are oral medications, and having a low molecular weight, they can enter the cell where they can affect gene transcription and thus decrease the inflammatory response. Stay tuned!

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Learn what it’s like to be a doctor who treats patients with the same chronic condition as yourself.

Rheumatologist With AS

Rheumatologist Hillary Norton, M.D., has spent her career caring for people with ankylosing spondylitis—including herself. 

When Your Doctor Has Ankylosing Spondylitis, Too

__Gender Differences with AS:__ *Clinics* (*Sao Paolo*). (2011). "Gender Differences in Ankylosing Spondylitis-Associated Cumulative Healthcare Utilization: A Population-Based Cohort Study." [ncbi.nlm.nih.gov/pmc/articles/PMC3059876/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3059876/)



What It’s Like to Be a Rheumatologist With Ankylosing Spondylitis

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 From Star Athlete to AS Patient Advocate-GCJ5640-Edit

Learn how to navigate diagnosis, treatment, and daily life with ankylosing spondylitis, a rare and painful condition that afflicts men and women of all ages.  

Ankylosing Spondylitis: We've Got Your Back

There’s so much misunderstanding about __ankylosing spondylitis (AS)__—a chronic and incurable form of inflammatory arthritis that primarily targets the spine—that it can take eight or more years to get a diagnosis. That’s a problem for the 1.1 million people in the U.S who have AS because research shows that those who are diagnosed within two years of developing symptoms are more likely to achieve remission and have a better long-term prognosis. When diagnosis is delayed symptoms tend to be more severe, and people with AS don’t respond as well to treatment. This causes their disease course to worsen, limiting day-to-day functioning and mobility.

So, why does it take so long to get answers? “AS usually begins as lower back pain in young adults,” notes Ronald Rapoport, M.D., chief of rheumatology at Southcoast Health in Fall River, MA, “but lower back pain in young, otherwise healthy individuals is often overlooked. Both patients and their primary care providers often assume they just did something playing sports, or whatever, and it will get better.” But with AS, it doesn’t. Red flags that what you’re experiencing isn’t just the result of wear and tear include pain and stiffness that:

- Is insidious, meaning it comes on slowly and persists for at least three months
- Is at its worst first thing in the morning and improves with activity and exercise during the day
- Wakes you in the middle of the night and keeps you awake unless you get up and move around.


AS Myth Video

Whether you’re searching for the right diagnosis for your symptoms, or trying to process a new diagnosis of AS and what it means for your future, we’ve got you. Wise up about these five myths so you can advocate for the best possible treatment—and get on with your life.

## Myth 1: AS Is a Man’s Disease

__Fact:__ This fallacy may have done more to prevent women from getting the diagnosis and treatment they need than any other. Until the last few years, AS was believed to affect men three times more often than women—and, technically, that’s still not *entirely* wrong. Classic ankylosing spondylitis is typically confirmed when an x-ray picks up visible erosion in the lower spine and sacroiliac (SI) joints, which connect the spine to the pelvis. This type of inflammation-related damage continues to be more frequently diagnosed in men, notes Joseph Martinez, M.D., a rheumatologist in Austin, TX.

But experts have come to understand that not everyone presents with these classic signs—and that symptoms can exist for a long time, even decades, before damage appears on imaging tests. So, the definition of AS has been expanded to include a broader family known as __axial__ __spondyloarthritis__. This new category considers more peripheral symptoms, which may be the first sign of the disease in many women. “It’s not uncommon for uveitis—inflammation of the eye that can accompany AS—to occur in women before back pain,” notes Dr. Martinez. Some research also indicates that women may have more pain in their neck or peripheral joints, such as the knees and ankles, than men do, and they may be more likely to have other related conditions such as psoriatic arthritis or inflammatory bowel disease (IBD).

When this broader definition is taken into account, the __true ratio of men to women with AS appears to be closer to 1:1__. “Rheumatologists now know to look for a broader range of symptoms and not to dismiss female patients if they don’t fit the classic definition,” notes Dr. Rapoport, “but a primary care doctor or an eye doctor may not, so it’s important to get to the right specialist.”

## Myth 2: Only White People Get It

__Fact:__ “Population studies do show that the highest prevalence of AS occurs in Caucasians and that the lowest rate is in African-Americans,” notes Dr. Martinez, “but anyone, of any race or ethnicity, can develop AS.” 

AS is most commonly seen in Northern European whites as well as certain Native American tribes in the western U.S. and Canada. However, research shows that other ethnic groups may have a worse prognosis than Caucasians. African-Americans have higher levels of disease activity, greater impairment, and more visible damage on imaging tests. Latinos may also have more severe disease than whites, and the less common juvenile onset version of AS is more common among Native Americans, Mexicans, and people who live in developing countries. With that said, __it’s clear than all ethnicities can get [AS](https://www.healthcentral.com/article/alicia-graf-mack-ankylosing-spondylitis)__.

## Myth 3: There’s a Genetic Test That Confirms AS

__Fact:__ We know there’s a genetic link to developing AS, and it does run in families, but experts believe there are also environmental triggers that help to “turn on” the disease. 

A number of genes have been linked to AS, with the most common one being the HLA-B27 gene. However, the presence of this gene alone is not diagnostic. HLA-B27 is a normal gene found in 8% of the Caucasian population, most of whom will never develop AS. Overall it’s estimated that no more than 2% of people with the HLA-B27 gene will develop AS, but this association also varies among racial and ethnic groups. About 90% to 95% of Caucasians with AS will test positive for HLA-B27, whereas about 80% of AS patients from Mediterranean countries will test positive, and only about 50% of African-Americans with AS do.

Because of this, testing for the HLA-B27 gene (via bloodwork) is important when AS is suspected. The presence of this gene is another piece of the puzzle (along with symptoms, imaging tests, and other inflammatory markers) that, taken together, can help confirm a diagnosis. “If you’re seeing your primary care provider about persistent lower back pain that’s not easily explained, ask to be tested for the HLA-B27 gene and referred to a rheumatologist for further investigation if you’re positive,” advises Dr. Rapoport. Bottom line? __Your genes are a single factor—and not the only clue—that can help determine whether or not you have AS__.

## Myth 4: If You Have AS, You Can’t Take NSAIDs

__Fact:__ While there is *some* risk of abdominal pain or gastrointestinal bleeding, yep, you probably *can* take these OTC medications—IF you work closely with your rheumatologist. NSAIDs (nonsteroidal anti-inflammatories such as ibuprofen, naproxen, and aspirin) are the first-line treatment for AS, along with exercise to strengthen the muscles that support the spine and other affected joints, helping you maintain function and mobility. In fact, some people are able to manage their disease for a very long time with just these inexpensive options.

“There are risks you need to be aware of, but if you’re otherwise healthy you can take NSAIDs long-term under the supervision of your doctor,” notes Dr. Martinez. “We look at it on a case-by-case basis. People who shouldn’t do this include those with cardiac and kidney issues, as well as IBD, which is aggravated by NSAIDs. Antacids can also be used to help protect the stomach lining and minimize GI problems—the most common side effect—in some people.”

Dr. Rapoport concurs: “When a patient has NSAID side effects, we can switch them to a lower dose, prescribe them every other day, or have people take them for, say, five days and then go off for two days. As long as they’re helping and your inflammatory markers in your bloodwork aren’t going up, there’s no reason to advance treatment.” So, __go ahead and take the NSAID that works best for your symptoms—but only after you get your doctor’s clearance first__.

## Myth 5: You Won’t Be Able to Stop the Pain and Long-Term Damage of AS

__Fact:__ If NSAIDs don’t provide the relief you need, the next step is biologic medications known as tumor-necrosis factor (TNF) inhibitors, such as Humira (adalimumab) and Enbrel (etanercept). These breakthrough drugs do typically help AS patients with pain that hasn’t been well controlled by NSAIDs and exercise, but their long-term benefits as far as limiting structural damage is still debatable.

“With other inflammatory illnesses such as rheumatoid arthritis, biologics have been proven to minimize disease progression and we don’t see bad deformities anymore, but we don’t yet have the evidence that these meds do the same for AS,” explains Zeeshan Sarder, M.D., an orthopedic surgeon who specializes in spinal conditions at Columbia University and New York Presbyterian Hospital in New York City. 

Plus, TNF inhibitors have their own side effects (suppressing your immune system and making you more vulnerable to infection is a biggie), are more expensive, and less convenient because they have to be given either by injection or infusion. They may also lend a false sense of security: “It’s not uncommon for us to switch someone to a biologic because NSAIDs have lost their effectiveness, and they feel so much better they try to do something they shouldn’t and end up with fractures because their bones are still weakened by AS,” adds Dr. Rapoport.

## Myth 6: AS Will Leave You Hunchbacked

__Fact:__ You can absolutely avoid this scenario—and the vast majority of people with AS today never reach this stage. The backstory: The term *ankylosing* refers to the formation of additional bone mass in the spine that fuses with the ligaments and joints. This happens over many years—literally decades—as a result of the reoccurring process of healing and repair after inflammation. In worst-case scenarios, the spine can permanently fuse in an immobile forward-curving position, leading to stooped posture known as kyphosis (yep: a hunched back).

“All patients will develop some level of fusion—usually in the SI joints at first, and it may travel up the spine,” notes Dr. Sardar, “but it can take 20 to 30 years to reach the lower (lumbar) spine and even longer to impact the complete spine. It’s rare now that AS progresses to the point that patients become so disabled that they require surgical correction, and that’s not until they’re in their 60s and 70s.” People with AS are more likely to require surgery because they fracture their unstable spines, or need hip or knee replacement to improve their mobility. “Patients who do get to the kyphosis stage may have gone underdiagnosed for a long time, or they were misdiagnosed,” notes Dr. Rapoport. “In short, we haven’t done our job well enough.” __So put away all outdated notions of Quasimodo: Very, very few people with AS in modern times go on to develop a hunched back__.

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young woman back pain-iStock-1008001668

A lot of people—even some doctors!—think ankylosing spondylitis is mainly a man’s disease that only affects white people. We’ve got the facts about this condition to clear up these misconceptions, and more. 

AS Myths

"Ankylosing spondylitis only affects white men." FALSE—but we've got the truth about this misconception (and more).

6 Common AS Myths You Can Let Go

- __Delays in Diagnosis:__ *Clinical Rheumatology*. (2015). “Delayed diagnosis is linked to worse outcomes and unfavorable treatment responses in patients with axial spondyloarthritis.” [ncbi.nlm.nih.gov/pubmed/25185731](https://www.ncbi.nlm.nih.gov/pubmed/25185731)
- __Gender and Diagnosis:__ *Journal of Rheumatology*. (2017). “Understanding how the diagnostic delays of spondyloarthritis differs between women and men: A systematic review and metaanalysis.” [ncbi.nlm.nih.gov/pubmed/27980009](https://www.ncbi.nlm.nih.gov/pubmed/27980009)
- __Ethnicity and Disease Severity:__ *Clinical Rheumatology*. (2017). “Ethnicity and disease severity in ankylosing spondylitis—a cross-sectional analysis of three ethnic groups.” [ncbi.nlm.nih.gov/pubmed/28780639](https://www.ncbi.nlm.nih.gov/pubmed/28780639)
- __Epidemiology of AS:__ Medscape. (2019). “Ankylosing spondylitis and undifferentiated spondyloarthropathy.” [emedicine.medscape.com/article/332945-overview#a5](https://emedicine.medscape.com/article/332945-overview#a5)
- __TNFs and Spinal Bone Formation:__ *Arthritis Research & Therapy*. (2019). “Inhibition of spinal bone formulation in AS: 10 years after comparing adalimumab to OASIS.” [arthritis-research.biomedcentral.com/articles/10.1186/s13075-019-2045-1](https://arthritis-research.biomedcentral.com/articles/10.1186/s13075-019-2045-1)


J.D. Miller, M.D., RhMSUS

Medical Reviewer

6 Common AS Myths You Shouldn't Believe

There are many misconceptions about ankylosing spondylitis, a chronic inflammatory form of arthritis. We've got the truth.

6 Top Myths About Ankylosing Spondylitis You Can Let Go

Tema Smith, 36, was living with ankylosing spondylitis (AS) for 20 years—yes, really!—before she even had a clue what the condition was. When she was 12, Smith experienced what she now knows was her first flare from juvenile-onset AS. 

From then on, for literally the next two decades, pain and fatigue would come and go, but they were always easily passed off as symptoms of something else:

- That pain in her feet, ankles, hips, and legs? Of course they hurt, she worked on her feet all day and was accident prone.
- The wrist and finger pain? She did spend a lot of time writing and playing her violin.
- Feeling beyond exhausted? She'd been diagnosed with hypothyroidism and then there was the bout of mononucleosis—hello, fatigue!
- And that low-back pain? It seemed so run-of-the-mill—until one day it really didn’t.

Smith, who lives in Toronto, had major flares of these symptoms at ages 17, 25, 27, 29, and finally, “the flare of flares” at age 32. That’s when she knew something was clearly wrong. She remembers being in tears from both the pain and the frustration of not know what caused it. She saw her doctor, who promptly referred her to a rheumatologist. That specialist said within 10 minutes of her visit: “I think you have AS.” Three months later, test results confirmed it.

AS is a systemic chronic disease that causes pain and inflammation primarily in the spine and sacroiliac (SI) joints, which connect the spine to the hips. AS can also affect organs, such as the eyes, heart, and lungs. There isn’t a cure for the condition—at least not right now—but getting the right medications and therapy started ASAP can not only improve your pain and symptoms, but it can also prevent long-term complications and joint damage. Some studies show treatment can also slow disease progression.

So how do you know if your persistent pain is AS or something else? Let’s dig into the differences between more the more common type of back pain—mechanical—and back pain that might signal something deeper is going on.

## The Causes of Mechanical Back Pain and AS Are Different

If you have back pain, you have plenty of company. Up to 90% percent of Americans have some form of acute back pain in their lifetime—meaning pain that lasts up to six weeks—says rheumatologist Fardina Malik, M.D., an instructor in the department of medicine at New York University’s Langone Health in New York City. Mechanical back pain is usually caused by a degenerative process in the joints or discs around the spine, Dr. Malik says.

That can include structural changes to discs, bones, and soft tissue, such as muscles and ligaments, says Lynn M. Ludmer, M.D., medical director of rheumatology at Mercy Medical Center in Baltimore. 

What causes routine back pain? Many things, including:

- Doing too much, resulting in a ligament sprain or tendon or muscle strain
- Radiculopathy, which occurs when a spinal nerve root is injured. Sciatica is a form of radiculopathy that occurs when the sciatic nerve in the buttocks and back of the leg is compressed. 
- Spondylolisthesis (don't bother trying to pronounce it!), which occurs when a lower-spinal vertebra slips out of place. According to Penn Medicine, this isn't the same as the term "slipped disc," which usually refers to a disc *between* the vertebrae moving out of place or rupturing.
- A traumatic injury
- Spinal stenosis or narrowing of the spinal column
- Skeletal irregularities of the spine, like scoliosis, which causes the spine to curve

AS, on the other hand, is caused by out-of-control inflammation—no injuries, muscle pulls, or lifting heavy boxes. Estimates say AS may affect approximately 1% of American adults. It’s unclear what triggers the inflammatory response in the first place, but genetics play a role. More on that in a bit.

## The Symptoms of Mechanical Back Pain and AS Are Different

According to the Cleveland Clinic, symptoms of mechanical back pain may include:

- Muscle spasms 
- Pain that radiates to the thighs or buttocks
- Pain that occurs mostly in the lower back
- Pain that seems most noticeable when you flex your back or lift heavy objects

While some symptoms may seem to overlap, the signs of AS are pretty distinct once you know what you're looking for. First and foremost: “Chronic back pain lasting three or more months that's caused by inflammation could be ankylosing spondylitis,” says Dr. Malik. So, think about your back pain for just a sec. It could be AS if:

- Your pain began at a relatively young age, typically before age 45. Smith is among the 10% to 20% of AS patients who develop symptoms before age 16.
- You wake up several times during the night with back pain, and then it's really hard to go back to sleep.
- You wake up in the morning feeling very stiff—it's the worst time of your day.
- Your lower back and buttocks may hurt first, and discomfort can switch from one side of the body to the other and back again.
- Your pain actually gets worse with rest. But if you start walking or stretching, usually after 45 minutes to an hour, your back pain gets better and you might even forget you woke up miserable as your day goes on. 
- You also have irritable bowel disease (IBD), psoriasis, or uveitis—a type of eye inflammation.
- You have tightness in your ribcage making breathing difficult.

AS, mainly affects the spine, but beyond that, the disease:

- Can affect hips, ribs, shoulders, knees, and feet 
- Can also affect organs, such as the eyes, heart, and lungs
- In severe cases, bone spurs can fuse the spine into an inflexible column. 


## The Path to Diagnosis Is the Same (to a Point)

When you visit your doctor for back pain, the first step will be a physical examination and discussion of your symptoms. Don’t expect any blood work to rule out a potential underlying disease like AS right away. You may not even get any imaging tests either. It isn’t realistic to do imaging on every patient who comes in with back pain. 

“We try to narrow it down to patients with chronic back pain and other clinical features that raise suspicion for AS,” says Dr. Malik. “A chronic low-back pain patient whose images don't show SI joint issues may have another cause of back pain.”

If your doctor suspects you've got something other than mechanical back pain going on, they’ll refer you to a rheumatologist who specializes in AS or arthritis. If you don’t get a referral, but think you need one, Dr. Ludmer says it’s important to speak up.

“Since it is uncommon, some primary care physicians do not think about the AS diagnosis in patients with chronic back pain and overlook clues to that diagnosis,” says Dr. Ludmer. “If a physician is not taking a patient's complaints seriously, they may need to find another physician.”

If your rheumatologist thinks you might have AS, they will:

- Take your medical history and ask you about family history: Any history of AS or autoimmune diseases in other family members?
- Do an overall physical exam.
- Do blood work. This could include measuring C-reactive protein (CRP) and  erythrocyte sedimentation rate (SED), which both indicate inflammation when elevated. A genetic test can also look for HLA-B27, but its presence is only an indicator, not a “for sure.” Though not often tested, genes IL23R and ERAP1 also raise the chance of developing AS, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), so they're not a "for sure" either.
- Perform imaging, such as X-ray, CT scan, or MRI to assess bone and joint health. Rheumatologists look closely at the spine and pelvic area, in particular the SI joint.

Smith's blood work, for example, showed high inflammation and that she had the HLA-B27 gene. Her MRI revealed sacroiliitis—an inflamed SI joint—and some swelling in her spine. 

“Since AS has strong genetic links, having a family history of the disease can be a strong clue,” Dr. Ludmer says. “HLA-B27 can be helpful in considering the diagnosis, but the majority of people in the United States with this gene do not have AS, so its presence needs to be considered in the context of other features.”

## Treatments AS and Mechanical Back Pain Vary

For mechanical back pain, the type of treatment you’ll get depends on what’s causing the pain. Some issues will resolve with rest and over-the-counter pain relievers, while other issues may require prescription medications, injections, or even surgery.

For AS, treatments typically include:

- Nonsteroidal anti-inflammatory drugs (NSAIDs). These include aspirin, Advil (ibuprofen), Aleve (naproxen), or Cambia (diclofenac). Patients who use NSAIDs have been shown in studies to have less X-ray damage over time. NSAIDS are also used as remedies for other back pain, but the doses needed to treat AS may be higher since AS has an inflammatory basis compared to mechanical back pain. Dr. Ludmer points out that people with AS shouldn’t dismiss the role of NSAIDs as an initial treatment to help with symptoms of joint pain and stiffness.
- Biologics, such as a tumor-necrosis factor (TNF) blocker or interleukin-17 (IL-17) inhibitor, work similarly to block the proteins that fuel inflammation. For AS patients who continue to have symptoms despite high-dose, continued NSAIDs, biologic medications really can be help, Dr. Ludmer says. They target proteins the body produces during an inflammatory response. FDA-approved TNF inhibitors include Humira (adalimumab) and Remicade (infliximab); Cosentyx (secukinumab) is an IL-17 inhibitor.
- Physical therapy to help relieve pain and increase strength and flexibility, as well as maintaining motion, Dr. Ludmer says.
- Surgery for severe pain or joint damage, sometimes to replace hip joints. A laminectomy to remove bone over the spinal canal may be done if fractures put weight on the spinal cord and adjacent nerves. Surgery is usually discussed if previous treatment options haven't provided enough relief. The idea, as always, is to ensure the best quality of life with a condition like AS.

Dr. Ludmer cautions that “AS does not come in one size. We do not know how to predict who will go on to do permanent damage, but joint replacements in hips and shoulders are not uncommon as is loss of motion in the all areas of the spine. The damage may be slow and difficult for patients—and physicians—to detect.” 

That's why early detection and treatment is so important. Jed Finley, a special-education teacher from St. Louis, was diagnosed at age 12 with AS. Now 38, Finley considers himself lucky to have gotten a diagnosis so early in life so he could begin treatment. He shares this message with anyone who suspects AS may be causing their back pain: “If you have back pain that you know isn't normal, don't let your doctor leave the room until you are satisfied because they can't get a good understanding of a patient in just five minutes.”

Finley and Smith are great examples of “if you feel something, say something.” And in Smith's case, keep saying something. If your back pain isn't getting better, and you suspect it's something more, listen to your body, and talk to your doctor.


black and white photo of nude woman with shadow going down spine

black and white photo of nude woman with shadow going down spine-helen-thomas-zOT1lNNQ5GE-unsplash

Learn how to tell the difference between AS, a chronic inflammatory condition, and other causes of your low-back pain.

Low Back Pain vs. AS

Ankylosing spondylitis (AS) is a chronic, lifelong form of arthritis that strikes early, usually between the ages of 17 and 45.

More Info on Ankylosing Spondylitis

AS Symptoms

Anca Askanase, M.D.

Rheumatologist, Director of Rheumatology Clinical Trials

Howard Blumstein, M.D.

Rheumatologist, Clinical Professor of Medicine

Jonathan Greer, M.D.

Rheumatologist, Assistant Clinical Professor of Medicine

We went to some of the nation’s top experts on ankylosing spondylitis to bring you the most up-to-date information possible:

Ankylosing Spondylitis Signs and Symptoms

Is that lower back pain and stiffness due to normal wear and tear or something more serious like ankylosing spondylitis? We've got the doctor-approved details to help you know the difference.

How to Spot the Signs of AS

Ankylosing Spondylitis Signs & Symptoms

Is that lower back pain and stiffness due to normal wear and tear or something more serious like the inflammatory condition ankylosing spondylitis? We've got the doctor-approved details to help you know the difference.

Let's Talk About Ankylosing Spondylitis Signs and Symptoms

Most of us have back pain at some point—90% of us, in fact—and it has lots of potential causes. Ankylosing spondylitis is one of them. Here’s how to know if AS might be behind yours.

Could That Back Pain Be Ankylosing Spondylitis?

- __Ankylosing Spondylitis:__ The Arthritis Foundation. (n.d.). [arthritis.org/diseases/ankylosing-spondylitis](https://www.arthritis.org/diseases/ankylosing-spondylitis)
- __Primer on Ankylosing Spondylitis (1):__ National Institute of Arthritis and Musculoskeletal and Skin Diseases. (n.d.). [niams.nih.gov/health-topics/ankylosing-spondylitis/advanced#tab-risk](https://www.niams.nih.gov/health-topics/ankylosing-spondylitis/advanced#tab-risk)
- __Primer on Ankylosing Spondylitis (2):__ Mayo Clinic. (n.d.). "Ankylosing Spondylitis." [mayoclinic.org/diseases-conditions/ankylosing-spondylitis/diagnosis-treatment/drc-20354813](https://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/diagnosis-treatment/drc-20354813)
- __Primer on Ankylosing Spondylitis (3):__ The Spine Hospital. (n.d.). [columbiaspine.org/condition/ankylosing-spondylitis-2/](https://www.columbiaspine.org/condition/ankylosing-spondylitis-2/)
- __Juvenile Spondyloarthritis:__ Spondylitis Association of America. (n.d.). "Overview of Juvenile Spondyloarthritis."[spondylitis.org/Juvenile-Spondyloarthritis](https://www.spondylitis.org/Juvenile-Spondyloarthritis)
- __Ankylosing Spondylitis and Spondyloarthropathy:__ Medscape. (2019) "How does the prevalence of ankylosing spondylitis (AS) and undifferentiated spondyloarthropathy (USpA) vary by age?" [medscape.com/answers/332945-70050/how-does-the-prevalence-of-ankylosing-spondylitis-as-and-undifferentiated-spondyloarthropathy-uspa-vary-by-age](https://www.medscape.com/answers/332945-70050/how-does-the-prevalence-of-ankylosing-spondylitis-as-and-undifferentiated-spondyloarthropathy-uspa-vary-by-age)
- __Spondylolisthesis:__ Penn Medicine. (2017). "What Does Your Spondylolisthesis Diagnosis Mean?" [ennmedicine.org/updates/blogs/neuroscience-blog/2017/december/spondylolisthesis](https://www.pennmedicine.org/updates/blogs/neuroscience-blog/2017/december/spondylolisthesis)
- __Mechanical Back Pain:__ Cleveland Clinic. (n.d.). "Acute Mechanical Back Pain." [my.clevelandclinic.org/health/diseases/4879-acute-mechanical-back-pain](https://my.clevelandclinic.org/health/diseases/4879-acute-mechanical-back-pain)
- __Spondyloarthritis and Gender:__ *The Journal of Rheumatology*. (2017). “Understanding How the Diagnostic Delay of Spondyloarthritis Differs Between Women and Men: A Systematic Review and Metaanalysis." [ncbi.nlm.nih.gov/pubmed/27980009](https://www.ncbi.nlm.nih.gov/pubmed/27980009)
- __Axial Spondylarthritis Prevalence:__ *Arthritis Care & Research*. (2014). "Prevalence of Axial Spondylarthritis in the United States: Estimates from a Cross-Sectional Survey." [ncbi.nlm.nih.gov/pmc/articles/PMC4032290/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4032290/)
- __Chiropractic and Ankylosing Spondylitis:__ American Chiropractic Association. (2016). "Chiropractic and Ankylosing Spondylitis." [acatoday.org/News-Publications/ACA-News-Archive/ArtMID/5721/ArticleID/79/Chiropractic-and-Ankylosing-Spondylitis](https://www.acatoday.org/News-Publications/ACA-News-Archive/ArtMID/5721/ArticleID/79/Chiropractic-and-Ankylosing-Spondylitis)
- __Ethnicity and Disease Severity in Ankylosing Spondylitis:__ *Clinical Rheumatology*. (2017). "Ethnicity and disease severity in ankylosing spondylitis: a cross-sectional analysis of three ethnic groups." [ncbi.nlm.nih.gov/pmc/articles/PMC5693696/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5693696/)  


Brian LaMoreaux, M.D.

Is It Low-Back Pain or Ankylosing Spondylitis?

Symptoms of ankylosing spondylitis, a form of inflammatory arthritis affecting your joints and spine, can be improved with the right fitness routine.

Back-Friendly Moves for AS

Ankylosing spondylitis (AS) is incurable, but treatment advances can control pain and stiffness by preserving posture, flexibility, and quality of life.

ThinkstockPhotos-587883044

AS is incurable, but treatment advances can control pain and stiffness. The American College of Rheumatology’s treatment goal is to ease symptoms and preserve normal posture, flexibility, and the ability to work and enjoy life.

Treatment Options for Ankylosing Spondylitis

Ankylosing Spondylitis (AS): Medications Can Maximize Quality of Life

Illo2

spine-friendly-Illo2

Strengthening your back will go a long way to easing pain and staying on top of ankylosing spondylitis.

8 Moves for a Healthier Back

Exercises to Strengthen Your Back with Ankylosing Spondylitis

Spine Extension

Spine Rotation

Hip-flexor Stretch

Neck Stretch

Calf Stretch

I-Y-T Exercise

Prisoner Squats

Belly Breathing

8 Exercises for a Healthier Back

When you learn you have ankylosing spondylitis (AS), a systemic  inflammatory condition that primarily affects your spine, the diagnosis can be difficult on you—and your partner. “When describing what it’s like having AS, the word ‘challenging’ is an understatement,” says Roselyn Tolliver, 54, of Merced, CA, who was diagnosed in 2018 and has been married for a decade. “That’s why it was so hard to explain to my husband that when you have AS, your pain never goes away.” 

And when you’re living through something like that, being able to rely on your partner is everything. That said, it’s not always easy to know how to do this. We’ve got you: If your partner was recently diagnosed with AS, you can rely on this time-tested advice from three couples who know what works. You’ll be on your way to earning “Partner of the Year” in no time.

## Be Kind to Your Partner—Especially in the AM

For many people living with AS, mornings are punctuated by lots of pain, especially if a fitful night’s sleep just occurred. “When I wake up, I remain in pain for several hours,” says Regan Reynolds, 39, of Raleigh, NC, who was diagnosed with AS in 2002 and has been married to her husband, Jason, since 2006. “It takes a lot to get going in the morning and my husband is always there to help me no matter what I might need.”


Reynolds2

## Advocate for Your Partner

This type of support can take many different forms but, for Jed Finley, 38, of Lake St. Louis, MO, who was diagnosed with AS when he was 12 years old and currently experiences such AS symptoms as neck pain, shoulder pain, fatigue, and brain fog, he is especially appreciative of his wife of 14 years, Brighid. She is always the first one to speak up for him at family dinners. “She’ll say things like ‘Hey, Jed can’t eat that,’ when someone serves something with dairy and sugar since that causes a lot of inflammation for me,” he says. “I can’t fully express how much that means to me.”


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## Remember That Listening Is Often the Best Medicine

If you like to talk through a problem, it helps to have a partner who is a good listener. “I rely on my husband not to fix things but to help me process what I’m going through,” Reynolds says. Her husband also lives with chronic illness—cerebral palsy—and he uses a wheelchair. “He understands what I mean when I say ‘I’m not feeling well enough to go out.’ He’s the first to say ‘Let’s order in.’ He always offers a different solution to whatever we’re going through and I really appreciate that.”


Reynolds1

## Show Your Love by Showing Up for Doctor Appointments

When Reynolds has a medication change or a challenge, she finds it extra helpful when her husband accompanies her to her rheumatologist appointments. “When my current medication is failing or beginning to fail or I’m at the end of my options, it’s a very stressful time,” she says. Having her husband along for appointments means he can be clear-headed and bring up things he’s observed in her since the last appointment. “For example, I have this random finger that swells up,” Reynolds says. “I wouldn’t have remembered to discuss this with my doctor recently if my husband wasn’t with me at my appointment.”


## Expect Flares—and be Kind to Each Other During Them

If you’re having a flare, you want your partner to be prepared—and never take any outburst personally. “I get really grumpy when I’m in pain,” Finley says. “When I have a pain flare, I come across as being angry with the world and I never want my partner to think she did something wrong.” To prevent any hurtful feelings, keep communicating, Finley says. And this works both ways. If you’re the one with AS, “the best thing you can do is to update your spouse and say ‘I’m having a really bad day today. I’m sorry if I come across as grumpy,’” he says. “Talking about this is way better than blowing up.”


## Be on the Lookout for New Ways to Spend Time Together

Ask Tolliver and she’ll tell you that she and her husband used to love their weekly golf outings. Unfortunately, as her AS flares began happening more frequently, the couple had to discontinue their trips to the links. “This was something the two of us loved doing together but the AS didn’t allow for it.” Recently, the couple discovered that they could play miniature golf together instead, and Reynolds noticed that she could play a relatively pain-free round. “I want people to know that with AS you may not be able to do everything you once did,” she says. “There was a grieving process for the life I had lost but my husband helped us find ways to continue to be fun-loving people—and spend time together, too.”


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Relationship advice for helping your loved one through flares, doctor appointments, family get-togethers, and all things AS.

Real talk from people with AS about how their partners always have their back.

6 Ways to Support Your Partner With Ankylosing Spondylitis

How to Support Your Partner With Ankylosing Spondylitis

Growing up, Charis Hill knew that her father had an illness with a hard-to-remember name that curved his back and left him in chronic pain. But she’d been told this disease only affected men, so she lived her life without concern for her genetic inheritance. 

A star soccer player in college, she found work as a professional mover, a bicycling advocate, a fashion model — jobs that took advantage of her physical strength and willowy good looks. Then she was diagnosed with ankylosing spondylitis (AS), just like her father. Today she <a href="https://beingcharis.com" target="_blank">blogs about her experiences</a>, leads her <a href="https://www.spondylitis.org/Community/Support-Groups/Sacramento" target="_blank">local AS support group</a>, and advocates for the chronic-illness community — including women with AS. 

Current studies show that more men than women have AS, with some sources claiming the ratio is 3:1, yet that ratio has decreased and is expected to continue to decrease. Charis shares her story with HealthCentral.

__HealthCentral (HC):__ When and how were you first diagnosed with AS? 

__Charis Hill:__ I learned I had AS five days after my 26th birthday, in 2013. I had been battling an upper-respiratory bug for months and was having significant trouble breathing. Antibiotics were not helping — in fact, I kept getting worse and became mostly bedridden. I even went to urgent care twice over a two-week period for a pneumonia scare and a heart attack scare, but tests didn’t indicate anything abnormal. 

On paper, I was the picture of health. In person, I was very sick. When doctors tried to say it was all in my head and give me anti-anxiety medication and antidepressants, I reached out to my estranged father to find out more about our family’s <a href="https://www.genome.gov/27527640/family-history-my-family-health-portrait/" target="_blank">medical history</a>. I knew he had AS, but I never once considered I would inherit it — growing up, I was told it was a man’s disease. His email response still haunts me: “Charis… it sounds like you could have AS… I need you to call me.”

Although I was diagnosed at 26, my symptoms began when I was 13 or even younger. I used to think my growing pains were worse than my peers. I kept quiet about it because I was embarrassed, but looking back I realize this was an early <a href="http://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/symptoms-causes/dxc-20261125" target="_blank">symptom of AS</a>. 

__HC:__ You gave <a href="https://www.youtube.com/watch?v=Lxc2peaGkig" target="_blank">a TedX talk</a> in which you call AS “an invisible disease.” How so?

__Charis Hill:__ We live in a world that is so fast-paced, it almost seems that everything is temporary; that if someone is sick today, they should be better tomorrow. I think this attitude causes society to blame people who have a chronic illness. This creates a stigma, leading most people with AS to, well, hide it as much as possible so we can “pass” as functioning members of society. 

People with ankylosing spondylitis are often in pain 24/7, but we’re also some of the strongest people you’ve ever met with our superhuman pain tolerance and ability to accomplish things with no energy. We didn’t choose to be strong — we have no choice but to be strong, just to survive.

__HC:__ How did your father’s experience with AS shape your perspective?

__Charis Hill:__ Growing up, I saw my father only once a year in wintertime. I struggled to understand why he was hunchbacked but was more curious about how he adapted to his physical deformity. 

I spent a lot of time practicing (in private) how he would balance on one foot and point the other toe into the ground to pivot his torso backward so he could look at me instead of directly at the ground. I knew he had a disease but I could never remember its name.

My father also smoked a lot and was an emotionally scarred person who handled anger in really unhealthy ways, and I somehow connected that to his disease. When I was diagnosed all I could see in my future was becoming a severely physically deformed, manipulative, violent, and lonely person living in a RV. I am still doing a lot of self-work to believe that my future is completely different!

__HC:__ What have you done to improve your day-to-day life with AS?

__Charis Hill:__ I have learned — incredibly slowly, as I am stubborn — to embrace anything that makes my life easier, no matter how geriatric it makes me feel. I used to believe that using a brace, compression gloves, or a cane would drastically compromise my identity as a young, formerly active person, but I have learned how much more they help me participate in life! I now shamelessly take advantage of any assistive technology, whether it’s special pillows for my bed or a wheelchair at the airport, so I can do more important things with the energy I have.

Another simple thing I do is freeze ready-made food in single portions so I can just thaw and microwave a healthy meal whenever I am not able to spend any energy cooking.

__HC:__ Can you talk about the intersection of AS and mental illness?

__Charis Hill:__ According to the National Institute of Mental Health, <a href="https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml" target="_blank">people with chronic diseases have a higher risk of depression, and people with depression have a higher risk of developing chronic diseases.</a> 

Ankylosing spondylitis is a very stressful illness and since people tend to hide it, they are more likely to feel isolated — a common theme for many chronic-disease sufferers — which leads to poor mental health. I live with a few mental illnesses on top of AS, including [depression](http://www.healthcentral.com/slideshow/16-things-consider-about-depression), anxiety, and [post-traumatic stress disorder.](http://www.healthcentral.com/anxiety/d/diagnosis/post-traumatic-stress-disorder-0) 

They all interact with each other and require different approaches to treatment. The challenge is not just juggling medications, but also paying attention to how my physical symptoms are exacerbated when I am having a particularly stressful time mentally, and vice versa. 

Since my psychiatrist works in a different office than my AS specialist, I often have to be their liaison, which puts a lot of pressure on me as the patient. Sometimes I will get dizzy and it takes a lot of work on my part to communicate with all my doctors to figure out whether the dizziness is a symptom of a medication or an effect of one of my conditions.

Many people do not understand that I also struggle mentally because I can generally interact with people without showing that I’m under psychological duress. It’s hard for me to express that my mind is as broken as my body, and that I often climb right back in bed as soon as I get home to rest my mind as well as my body.



Charis Hill didn’t think women were at risk for ankylosing spondylitis. Then she got her diagnosis. Read this powerful Q&A with a former star soccer player turned AS patient advocate.

Charis Hill holds a cane and looks off camera.

Charis Hill didn’t think women were at risk for ankylosing spondylitis. Then she got her diagnosis.

Star Athlete Turned AS Patient Advocate

From Star Athlete to Ankylosing Spondylitis Patient Advocate

*If you’re here, you’re hurting, and that’s no good. Even though there’s no cure for ankylosing spondylitis (AS), there are highly effective treatments available, with more on the horizon. And, here’s something surprising: One of the best remedies may very well be the simplest, the cheapest, and the safest. Curious? Read on to learn more about a lifestyle change that can make a real difference, plus what you need to know about breakthrough biologics and how you can avoid ever needing surgery. We’ve got you.*

## What Is AS, Anyway?

Let’s review: You know that osteoarthritis causes pain and stiffness in the joints of older people due to wear and tear. 

__Ankylosing spondylitis__ (pronounced *ank-eye-low-sing spon-dill-eye-tiss*) is different: It's a form of inflammatory arthritis that strikes at much younger ages, typically between 17 and 45 years of age. The [hallmark characteristic is chronic inflammation in the sacroiliac (SI) joints](https://www.healthcentral.com/condition/ankylosing-spondylitis-symptoms), which join the spine to the pelvis. Although AS primarily affects the spine, other areas can become inflamed as well, including the shoulders, hips, ribs, heels, and small joints of the hands and feet, and it can lead to severe, chronic pain and discomfort. In more advanced cases, this inflammation can lead to ankylosis—new bone formation in the spine—causing sections to fuse into a fixed, immobile position.

You may not have heard of AS until now, but the condition is not that uncommon. About 1 out of every 200 adults in the U.S., or 1.1 million people, has AS, according to The Spondylitis Association of America. Once considered primarily a male disease, there is increasing evidence that women may be underdiagnosed and the true ratio of men to women might be closer to 1:1.

## What Are the Best AS Treatments?

Ankylosing spondylitis is a not your usual chronic disorder because one of the first-line treatments isn’t a serious drug or surgery. 

In fact, this remedy would be considered a *complementary* therapy for pretty much every other lifelong illness on the planet. We’re talking about good old-fashioned exercise, folks, and the benefits of breaking a sweat to AS patients are vast. 

What’s more, there’s a good chance that another first-line treatment is already sitting in your medicine cabinet, no prescription required. That would be nonsteroidal anti-inflammatory meds, otherwise known as NSAIDs. (You know them as aspirin, Aleve (naproxen), and Advil or Motrin (ibuprofen.) It’s not unusual for AS patients to manage on just these two “treatments” for years. Here’s the lowdown on how and why they work, and what you need to know when it’s time to move on to other medication options like biologics.


Basics

Our in-depth overview shares the latest doctor-approved info on symptoms, diagnosis, treatments, and what it's really like to live with ankylosing spondylitis.


Get the Basics (and So Much More) About AS

## Exercise

It's a no-brainer that moving your body and getting your blood pumping is good for everyone. Exercise increases strength, endurance, balance, and flexibility. It also improves cardiovascular endurance, reduces high blood pressure, increases good cholesterol (HDL), maximizes bone density, helps in weight management, lowers stress levels, boosts self-esteem, and even has the potential to better the body’s response to medications. 

AS patients can add even more to this mega-list of benefits: Exercise loosens up the joints, relieves pain and stiffness, and keeps the spine flexible, while also improving posture, fatigue, and breathing capacity. It’s not a stretch to say exercise will improve your overall function and quality of life. 

Huge, right? But before you get nervous about having to train for a marathon, know this: We’re not talking extreme exercise, which isn’t great for people with AS, either. We’re going for a gentler approach here. You’ll need to avoid anything high-impact (running, jumping rope) or risky (black-diamond ski runs). Instead, your routine should include these important exercise components:

- __Stretching:__ These exercises should be done daily to take the muscles and joints through their full range of motion. Think neck, side, and hamstring stretches, or even the warm-up type of exercises you’d do *before* playing a sport. Yoga, too, is great for AS. Those downward dogs can do wonders for the lower back. 
- __Strengthening:__ You can use weights, resistance bands, or just your own bodyweight to build muscle. Think: sit-ups, planks, hip and leg extensions, and [Pilates](https://www.liebertpub.com/doi/10.1089/acm.2018.0405). It’s especially important to focus on strengthening your core muscles in your abdomen and back because they support the spine, reducing the stress on it and minimizing back pain. Aim for two to four times a week.  
- __Balance:__ This type of exercise should be done three to five times a week to reduce your chances of falling, which is especially important because people with AS have lower bone density and are at increased risk for fractures. Balance moves include single-leg stands, standing up from a chair without using your hands, or standing with one foot in front of the other with your toes touching your heel. The ancient Chinese tradition of Tai Chi also promotes better balance, reduces stress, improves mood, and even helps you sleep better.(You can also try this [balance workout](https://www.healthcentral.com/slideshow/balance-exercises-multiple-sclerosis).)
- __Cardiovascular activity:__ Low-impact aerobic activities should be performed for a sustained period of time to increase blood flow to the heart and [improve heart and lung function](http://www.jrheum.org/content/early/2018/06/21/jrheum.170726). Swimming, cycling, or using an elliptical trainer are all good options. Also: plain, old walking. Cardio exercise should be done three to five times per week for a total of at least 75 to 150 minutes each week.

Timing is also important. You’re going to need to get moving as soon as you can in the day to loosen up those screaming joints, but you still need to take a gradual approach.

Where to start? Gentle stretching is your best bet, followed by other types of exercise later in the day when you feel better. Ask your doctor about prescribing physical therapy when you’re first diagnosed to help you learn the most effective exercises and proper techniques, as well as ways to improve your posture. 

If your posture is poor and your spine begins to fuse, there’s a risk that it will do so in a stooped position—almost as if you’re bending over or forward—which can increase your risk of complications including breathing or cardiovascular problems. But again, building your overall strength and flexibility will go far in helping you prevent complications like this. 


## Medication


Exercise

### Nonsteroidal Anti-inflammatories (NSAIDs)

These easily available and inexpensive meds work by blocking prostaglandins, a substance in the body that increases inflammation and pain. They have a [proven track record](https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD010952.pub2/full) in treating AS.

Over-the-counter options such as ibuprofen, naproxen, and aspirin may be all you need early on—along with exercise, of course—and many patients with milder symptoms are able to utilize them periodically for years before having to move to something else. No one type of NSAID is believed to be better than another for AS, so whichever one works best for you is fine. 

While taking NSAIDs on an as-needed basis is usually best, most people with AS do need to take them regularly—but always as directed by a doctor, as overuse of NSAIDs can sometimes cause, liver, kidney, and gastrointestinal problems. Another important caveat: If you have AS with IBD—known as enteropathic arthritis—you should definitely *not* take NSAIDS (unless your doctor specifically directs you to take them) because they can aggravate IBD symptoms. 

It’s not uncommon to need prescription-strength doses of NSAIDs for relief, which means side effects are more likely. The most typical side effects are stomach upset and gastrointestinal issues because NSAIDs can reduce the amount of protective mucus in the stomach, resulting in irritation. Eventually, heartburn, gastritis, ulcers, and bleeding in the digestive tract can occur. Talk to your doctor ASAP if you experience any side effects. 

Other OTC meds such as antacids and acid reducers may help protect you and reduce your symptoms but talk with your doctor about which ones are appropriate. 

One type of acid reducer you should avoid unless directed by your doctor is a proton-pump inhibitor (PPI) such as Prevacid (lansoprazole) and Prilosec (omeprazole). PPIs have been associated with an increased risk of osteoporosis because they reduce calcium absorption. This is a problem you definitely don’t need with your already compromised bone density. Another class of NSAID, known as COX-2 inhibitors—which includes the medication Celebrex (Celecoxib)—may reduce the risk of these GI side effects.

NSAIDs

### Biologics

These groundbreaking meds are made from living microorganisms, plants, and animal cells, and they're delivered via injection (which you can learn to do yourself at home) or IV infusion at your doctor’s office. 

When NSAIDs and exercise are not effective enough to control your symptoms, or the side effects of NSAIDs become too severe, your doctor will likely turn to this class of medication. You may be prescribed a biosimilar, which is a [less expensive version that works the same way](https://www.healthcentral.com/article/save-money-prescription-medications), similar to a generic medication. There are two main types of biologics (and biosimilars) used to treat AS:

__Tumor-Necrosis Factor inhibitors (TNFi)__

Also known as anti-TNF agents, these drugs work by binding to and putting the brakes on an inflammation-causing protein known as tumor-necrosis factor alpha (TNF-a). The TNFi biologics approved to treat AS include:

- __Cimzia (certolizumab pegol):__ Nearly 6 in 10 AS patients saw reduced inflammation by 12 weeks, with some showing improved symptoms by one to two weeks. Cimzia injections are needed every four weeks.
- __Enbrel (etanercept):__ Enbrel was the first biologic approved by the FDA to treat AS in 2003. It has been shown to be effective in three out of five adults after six months of use. Inflammation reduction was reported at two weeks in 46% of patients, and 59% saw benefits within eight weeks. Enbrel injections are needed weekly.
- __Humira (adalimumab):__ Reduced inflammation has been seen by some patients as early as two weeks, with 58% of patients seeing at least a 20% improvement after three months of use. Humira injections are required every other week.
- __Remicade (infliximab):__ About 60% of patients see an improvement in symptoms after six months on Remicade. Infusions are given in three starter injections at 0, 2, and 6 weeks, then as a maintenance dose every six weeks 
- __Simponi/Simponi Aria (golimumab):__ More than 73% of patients experience at least a 20% reduction of inflammatory symptoms by 16 weeks. Simponi injections are required every four weeks; Simponi Aria is given as a baseline dose, followed by a second one at four weeks, then every eight weeks thereafter.

__IL-17 Inhibitors__

If a TNFi is not effective, or you can’t tolerate the side effects (more on these below), your next option is known as an IL-17 inhibitor. They work in the same way as TNFi biologics, but target a different inflammatory protein known as interleukin-17. The two approved for treating AS are:

- __Cosentyx (secukinumab):__ More than 60% of people saw at least a 20% improvement in AS symptoms by 16 weeks. An injection is needed every four weeks.
- __Taltz (ixekizumab):__ The most recent FDA-approved biologic for AS, Taltz has been shown to significantly improve inflammatory symptoms in 48% of patients by 16 weeks. Taltz is given as a two-injection starter dose the first time, then one injection is required every four weeks.

__Side Effects and Safety__

All types of biologics suppress your immune system, so an increased risk of infection may be the biggest side effect you could experience. If you carry a dormant infection, such as tuberculosis or Hepatitis B, it may also become reactivated when you take a biologic. 

You’ll need to be tested for both of these infections before starting treatment, and stay up-to-date on all necessary vaccines, including an annual flu shot. IL-17 inhibitors have also been shown to exacerbate IBD symptoms associated with ulcerative colitis and Crohn's, or bring on [new cases of IBD](https://ard.bmj.com/content/78/4/473), so they are not appropriate for people with enteropathic arthritis.

Be sure to discuss these and any other health issues you may have with your rheumatologist. Your doctor can determine if the benefits of biologics outweigh the risks for you.

While they vary by biologic, other side effects may include:

- Bruising
- Chills
- Fever
- Headache
- Hives
- Itching
- Rashes
- Redness
- Swelling at site of injection

Rarely, biologics—especially TNFis—may increase your risk of:

- Other forms of arthritis
- Liver problems
- Lymphoma
- Lupus-like reaction that includes rash, joint pain, muscle ache and fever

### Corticosteroids

There is no question that this class of medication, known as steroids for short, is an effective pain reliever. Unfortunately, oral steroids such as prednisone have systemic side effects that can be severe if they’re used long term, meaning more than three consecutive months at a time. For this reason, steroids are generally given as an injection directly into inflamed joints to treat AS. Steroids are not typically injected into the spine, however, so this treatment is used in AS when those peripheral joints (shoulders, knees, heels) are being affected.

### One Last Note About Two Other AS Meds

Although neither is particularly effective at treating spinal arthritis, you may encounter two older drugs during your AS journey.

The first is __sulfasalazine__ (brand name Azulfidine) and the other is the chemotherapy drug __methotrexate__ (brand name Rheumatrex). 

Both limit tissue damage from inflammation, but the Spondylitis Association of America only recommends their use when a biologic is not available (perhaps due to cost) or has lost its effectiveness over time. That said, methotrexate can help relieve inflammation in other parts of the body, including the eyes, and it can help biologics maintain their oomph by preventing the development of antibodies that interfere with how the drugs work. 


Biologics

## Surgery for AS

Don’t stress about having to go under the knife eventually—odds are you won’t. In all but the most extreme situations, spinal surgery is not used to treat AS because it’s such a high-risk procedure. 

Only when AS restricts breathing (rare!) is surgery performed to straighten a spine that has curved forward. In these situations, the surgeon will cut through the vertbrae and reposition them into a straighter, more vertical position. 

Medically designed metal (usually titanium) rods, bars, wires, and screws are used to hold the repaired spine in place—usually permanently, although they are sometimes removed later in rare cases if irritation or infection occurs.

Some AS patients may eventually need joint replacement therapy—usually in the knees or hips—for severe damage that makes daily activities like walking or climbing stairs difficult. During this procedure, the surgeon removes the damaged joint and replaces it with one made from metal, plastic, or ceramics.

Surgery

No! Chiropractors may provide relief for other types of backache, but their treatment is not appropriate for AS. In fact, they can make things worse. The decreased flexibility of the spine makes anyone with ankylosing spondylitis highly prone to spinal fracture, so the hands-on adjustments chiropractors make is *not* recommended.

Would a chiropractor be helpful?

The best we can say right now is maybe. Some studies suggest that they do not, while others have shown that they can reduce the progression of spinal damage seen on an X-ray by as much as 50%.

Do biologics prevent AS damage?

Yes! The right kinds of exercise go a long way towards both relieving pain and stiffness and maintaining flexibility in your spine and other affected joints. For many AS patients with mild to moderate symptoms, exercise and using NSAIDs as needed are effective treatments.

Can I just stick to exercise if it’s helping?

That’s perfectly okay. You should adjust your routine, focusing on your stretching exercises to maintain your range of motion and do light aerobic activity, such as a short walk. Hold off on strength and balance exercises, as well as more intense aerobics or sports, if they worsen your symptoms.

What if I can’t exercise as much during a flare?

AS Treatment FAQ

Ankylosing Spondylitis Treatment

There's no cure for Ankylosing Spondylitis (AS), but there are highly effective treatments available. One of the best remedies may very well be the simplest.

AS Treatment

Ankylosing spondylitis (AS) is a form of inflammatory arthritis. About 1 out of every 200 adults in the U.S. has AS.


Ankylosing Spondylitis

We went to some of the nation’s top experts on AS to bring you the most up-to-date information possible.

We’ve got the doctor-approved scoop on causes, symptoms, treatments, and a jillion other facts and tips that can make life with AS easier.

Let's Talk About Ankylosing Spondylitis

Ankylosing Spondylitis: Symptoms, Causes, Treatments

We went to some of the nation's top experts on ankylosing spondylitis to bring you the most up-to-date information possible:

woman-exercising-bear-body-of-water-1300526

Having a chronic illness can be a tough adjustment—but managing the pain doesn't have to be. With ankylosing spondylitis, you've got plenty of options.

Everything You Need to Know About Treating AS

- __AS in Women (1):__ *BMJ Open.* (2014). "Increasing Proportion of Female Patients
With Ankylosing Spondylitis:
A Population-based Study of Trends in
the Incidence and Prevalence of AS." [bmjopen.bmj.com/content/bmjopen/4/12/e006634.full.pdf](https://bmjopen.bmj.com/content/bmjopen/4/12/e006634.full.pdf)
- __AS in Women (2):__ *Current Rheumatology Reports.* (2018). "Gender Differences in Axial Spondyloarthritis: Women Are Not So Lucky." [doi.org/10.1007/s11926-018-0744-2](https://doi.org/10.1007/s11926-018-0744-2)
- __2019 Axial Spondyloarthritis Treatment Recommendations:__ *Arthritis & Rheumatology*. (2019). "2019 Update of the American College of Rheumatology/
Spondylitis Association of America/Spondyloarthritis Research and Treatment Network Recommendations for the Treatment of Ankylosing Spondylitis and Nonradiographic Axial Spondyloarthritis" [rheumatology.org/Portals/0/Files/AxialSpA-Guideline-2019.pdf](https://www.rheumatology.org/Portals/0/Files/AxialSpA-Guideline-2019.pdf)
- __The Role of Exercise:__ Spondylitis Association of America. (2018). "The Role of Exercise in Spondyloarthritis/"
[spondylitis.org/LinkClick.aspx?fileticket=fo_RrqLaNaQ%3d&portalid=0](http://www.spondylitis.org/LinkClick.aspx?fileticket=fo_RrqLaNaQ%3d&portalid=0)
- __Combining NSAIDs and Biologics to Treat AS:__ American College of Rheumatology. (2016). “Combination of NSAIDs and TNF-inhibitors shows benefit for ankylosing spondylitis.” [sciencedaily.com/releases/2016/11/161113154759.htm](http://www.sciencedaily.com/releases/2016/11/161113154759.htm)
- __Exercise Recommendations:__ *Seminars in Arthritis and Rheumatism*. (2016). “Exercise for Ankylosing Spondylitis: An Evidence-Based Consensus Statement.” [ncbi.nlm.nih.gov/pubmed/26493464](http://www.ncbi.nlm.nih.gov/pubmed/26493464)
- __The Latest as Therapies and Most Recent Discoveries:__ *F1000 Research*. (2018). “Recent advances in ankylosing spondylitis: understanding the disease and management.” [f1000research.com/articles/7-1512](https://f1000research.com/articles/7-1512)
- __Role of Methotrexate:__ *Annals of Rheumatic Diseases.* (2015). "The Effect of Comedication With Conventional Synthetic Disease Modifying Antirheumatic Drugs on TNF Inhibitor Drug Survival in Patients With Ankylosing Spondylitis and Undifferentiated Spondyloarthritis: Results From a Nationwide Prospective Study." [pubmed.ncbi.nlm.nih.gov/25710471/](https://pubmed.ncbi.nlm.nih.gov/25710471/)


Ankylosing Spondylitis Treatment: Medication, Exercise and Surgery

Having a chronic illness can be a tough adjustment—but managing the pain doesn't have to be. With AS, you've got plenty of treatment options.

Let's Talk About Treatment for Ankylosing Spondylitis

In her powerlifting class in high school, while squatting 450 pounds, having anything wrong with her spine was the furthest from Ashley Romereim's thoughts. Afterall, she was hoisting the weight of three adults confidently over her head. Ashley, diagnosed with [ankylosing spondylitis (AS)](https://www.healthcentral.com/slideshow/10-facts-about-ankylosing-spondylitis) at age 16, was an athlete in the strength sport that includes the squat, the bench, and the deadlift categories. Now 30, she has found relief from some of the pain that comes with AS from a spinal stimulation device. Ashley talked with HealthCentral by telephone about what it was like to learn she has AS and how she lives a full life right now.

__HealthCentral (HC): How did you begin your AS journey?__

__Ashley:__ It began in 2004, when my first clue was pain in my back that didn't go away. I thought I'd pulled a muscle. But my dad and grandfather had AS, and so when I went to my primary care doctor, there was shadowing on the X-ray of my spine, and especially on the sacroiliac (SI) joint. This is common with AS, often as a first symptom. 

I was really active and this news was so frustrating. I had to quit softball — I was a catcher — and I couldn't lift anymore. I also had to quit marching band, where I played trumpet, which broke my heart. Music was my life and I was an opera singer who performed at Carnegie Hall with the Master Arts Chorale and at the Kennedy Center in Washington, D.C.



Ash 2

Ashley Romereim lifting

__HC: You've talked about dealing with the pain and how exhausting that was. What did you do recently about that?__

__Ashley:__ On December 6 last year, I had a spinal stimulator surgically implanted. It's essentially an internal version of a TENS unit — which stands for transcutaneous electrical nerve stimulation. I have a battery pack implanted on the back of my left hip, right above my gluteal region. Two leads are attached on either side, and they go between my thoracic and lumbar vertebrae. The device transmits low-voltage electrical impulses, via electrodes, to the body part that's in pain.

This works really well for my lower back. The electrical stimulation relieves a lot of the pain, and I've been able to cut my dosage of oral pain medications in half. This is a big step for me, since I've been taking pain meds regularly since I was 18.

__HC: What else did you use in the past for your pain?__

__Ashley:__ I know they work really well for lots of people, but I don't react well to biologics. I did take Humira, a TNF blocker (tumor necrosis factor blocker), and I think I tried every TNF blocker, some for a few years, some for a short time. I also tried a biosimilar to the biologic drug Remicaid, called Inflectra, but I had a side effect of heart problems, with my heart skipping beats, along with tachycardia or really fast beats. I was tired of being in pain and tired of not working. I don't want to have to rely on my parents for help. Thanks to my device, now I have a receptionist's job at a doctor's office.



Ash 3

Ashley Romereim

__HC: Tell us about your day-to-day health maintenance.__

__Ashley:__ I have to "recharge myself" daily, because the unit contains a battery. I use a portable charger. Oh, and I haven't had any issues with going through metal detectors! About those pain meds that I still take: I use the antidepressant Cymbalta, which in addition to helping my mood, is actually approved for the kind of pain I have. I also use muscle relaxers when I need to.

I confess I'm eating kind of terribly right now. But I try to do cardio and weights three-to-four times a week — I love the gym and also yoga. Oh, and I'm also hypermobile, which means my joints are much more flexible than normal and so I haven't had much fusion, which is both a blessing and a curse. For me, it means my knees pop out of my joints when I'm trying to take a class!



Ash 1

Ashley Romereim Supergirl

__HC: What else is relevant in your life right now and what "completes" you?__

__Ashley:__ I think it's so important not to view AS as "the end of the world.” Yes, it's disheartening to have this condition, but there's also a lot to learn, so do your research and find good doctors. Find a community of other people with AS. Being a part of that helps my depression immensely, for having people who understand what's going on has helped me more than anything — which brings me to therapy. It can be a godsend, especially when you are grieving the loss of life as you knew it. You learn to come into a new life, knowing you're never going to be the same person, but this is your new normal. There are still so many things you can do.


Ash 4

Ashley Romereim with owl

An implanted spinal stimulation device has reduced this woman’s low back pain and reduced her need for oral pain medication.

Spinal Stimulation & AS 

Ashley Romereim has been taking oral pain medication for her ankylosing spondylitis since she was a teenager. Now, a surgically implanted spinal stimulator has reduced her low back pain and cut her oral pain meds in half.

‘Internal TENS Unit’ Brings AS Pain Relief for This Former Powerlifter

Spinal Stimulation for Ankylosing Spondylitis Pain

 How one woman with ankylosing spondylitis found relief from a spinal stimulation implant

A Surprising Solution to Decades-Long Back Pain  

Zach Kornfeld announced he has [ankylosing spondylitis](https://www.healthcentral.com/slideshow/10-facts-about-ankylosing-spondylitis) (AS) [on YouTube in 2017](https://www.youtube.com/watch?v=v9iTfaYmH5E). Since then, he has continued to share his experiences with the disease as a member of The Try Guys, a YouTube comedy quartet Zach describes as “four guys who have tried everything from simulating labor pains to, trying drag, to swimming in the ocean with sharks.”

HealthCentral interviewed Zach by phone and discovered his approach to using ankylosing spondylitis as an opportunity to live a healthier and better life.

This interview has been edited for clarity.

__HealthCentral (HC): What is it like living with ankylosing spondylitis and being a Try Guy?__

__Zach Kornfeld (Zach):__ I’ve found that my job pushes me in a way that is positive. It’s encouraged me to be active, to be out there, and be open to new experiences. But at the end of the day there are just some things that I’m not gonna be able to do the way that I used to.

Honestly, the hardest part about my job isn’t the things I do on camera. I’m a total workaholic, and a lot of success of our show is built on a ton of late-night editing and that’s just not feasible anymore. My body lets me know now: “It’s time to stop working.” 

It’s funny, I mean, the disease is not good, and not fun, but it has forced me to revisit a lot of my work-life habits. I used to be wildly unathletic and unphysical, and AS demands that I change those things. It demands that I don’t work huddled over a computer for 16 hours a day. I’m the kind of person who doesn’t change anything until I absolutely have to, so life gave me a pretty loud wake up call, and I’ve tried my best over the past year-and-a-half to really listen and change the way I live.

Zach Kornfeld holding a copy of the book "The Hidden Power of Fucking Up."

49641298 763002217390778 1875121814765344310 n (2)

Zach Kornfeld book

__HC: Since your diagnosis, what else has changed?__

__Zach:__ After that video I had so many people reach out to me. There were people that got diagnosed with AS after hearing me talk about my symptoms. The biggest thing is that friends and family are now holding me a lot more accountable to my treatment. It was easy to go through the day without doing my stretches and not eating as well, but now that the videos are up, people are like: “Oh my god, you feel this way? You have to take *care* of yourself!” I get a lot more calls from my mom checking up on me and seeing how I’m doing, and from my grandma as well.

It’s hard for anyone who’s not experiencing it to really fully understand. I definitely have times where family members are frustrated that I’m not doing *more* to help myself, and I have to tell them: “Changing everything in your life all at once is really overwhelming, and everyone goes at their own pace. I’m handling it the best I can, making changes steadily, and improving my life steadily; but it is a process.”

__HC: How do you approach your self-care and treatment?__

__Zach:__ Before [my second video](https://www.youtube.com/watch?v=lbu8LLDB2dU), my medicine stopped working and it was a really slow process of acceptance. I just wanted medicine to solve all my problems.

The diagnosis was the first wake-up call. Once the medication stopped working, that was the second wakeup call. That really forced me to take a long look in the mirror and say:

“This is a lifestyle commitment. I can’t just rely on medicine. I need to be proactive about this. I need to test different things and monitor how different activities make my body feel. I need to commit to [stretching and exercise](https://www.healthcentral.com/slideshow/exercise-for-ankylosing-spondylitis) to get ahead of this thing and to *stay* ahead of this thing. And if I ever want to go into remission it’s not going to be just because the medicine was magically working, it’s gonna be a combination of so many things.”

I’ve noticed lately that [diet is a big one](https://www.healthcentral.com/article/diet-and-ankylosing-spondylitis), so I’ve just been conscious of triggers. Especially on big weeks, the cleaner I eat, the better I feel. I do a walk every morning with my dog. I try and do stretches every morning before I shower. I have a [portable TENS unit](https://www.healthcentral.com/article/the-truth-about-tens-devices-for-joint-pain). It’s just having these things; even if they don’t totally help 100 percent, they just make me feel better mentally knowing I have them.

39820368 1900866126665465 1415011039052824576 n (2)

Zach Kornfeld and Bowie

__HC: Why is it important to speak out about ankylosing spondylitis?__

__Zach:__ When I was a kid, I got diagnosed with Obsessive Compulsive Disorder (OCD) and I had bouts of depression. In seventh grade, we were learning about OCD and there was this printout of famous filmmakers and artists throughout history who suffered from OCD and depression. Something that simple was enough to make me feel like I wasn’t alone.

Now I have this platform, and our content is about making the world a smaller place and highlighting people and making everyone feel less alone. I do that for other people’s passions and identities, and now I have an opportunity to do that for something I’m going through as well.

Talking about it has only led to positive things and changes in my life. Being open about my AS has introduced me to other people, it’s helped me deepen existing relationships, and it’s brought me new information about ways to care for myself in ways that I would have never expected. If you keep it to yourself, you’re just a one-person-army fighting this burden all on your own.

__HC: Is there anything else you want to share with HealthCentral?__

__Zach:__ For me the diagnosis was scary, but it was also a tremendous relief. Despite the fact that it’s not something I enjoy, it has forced me to become a better person and that’s made me ultimately a happier person. I’ve discovered pretty quickly that treatment is a bumpy road; but it’s a bumpy road that, with luck, keeps you trending in the right direction.

You can keep up with Zach on [Twitter](https://twitter.com/korndiddy) and [Instagram](https://www.instagram.com/korndiddy/).



Zach Kornfeld beach

Zach Kornfeld hero

A 2017 diagnosis of ankylosing spondylitis meant "Try Guy" Zach Kornfeld had to make choices for a healthier life with chronic illness.  

Along with Zach Kornfeld three YouTube partners, he'll try anything. Now he's trying a healthier life with ankylosing spondylitis.

"Try Guy" Zach Kornfeld Talks AS

"Try Guy" Tries Positive Approach With Ankylosing Spondylitis

How an AS Diagnosis Made YouTuber Zach Kornfeld Happier

If you have ankylosing spondylitis (AS), care may be managed by your interdisciplinary team but your own care is up to you — and it’s just as vital. Try these tips for AS self care.

Self Care for AS 

Woman sitting, thinking, and holding a fallen leaf.

iStock-622982604

Woman thinking and holding a fall leaf

Just as important as your medical team and medication regimen is your practice of self-care. Sometimes this means choosing the right workouts, and sometimes it’s about prioritizing your priorities. At the end of the day, remember that you matter more than your condition.

While You’re Treating Your AS, Treat Yourself, Too

Self-care for Ankylosing Spondylitis 

Counteract forward flexion

Manage flare-ups

Choose non-weight-bearing exercises

Assess your fitness

Mind your mindfulness

Determine what self-care means to you

Think before you do

Prioritize your priorities

It's about you

Self-Care for Ankylosing Spondylitis: You Matter

This month marks 10 years since [ankylosing spondylitis (AS)](https://www.healthcentral.com/category/ankylosing-spondylitis) dramatically changed the trajectory of my life. If I could look my younger self in the eyes, place my hand on her shoulder, and speak words that would bring comfort, this is what I would say.

Dear KJ,

You are so afraid, and I want you to know you have permission to fear and flail and break. The pain in your body bewilders you, and you fear you’ll never receive validation for how profoundly and rapidly your life has changed. 

You will.

I want you to know you never gave up. 

At times you feel the uncertainty of not having a diagnosis or a secure [path to treatment](https://www.healthcentral.com/slideshow/treatment-options-ankylosing-spondylitis) might make your soul crumble. It won’t. 


“So, look up and live, even though your body sometimes feels like death.” -KJ Ramsey, ankylosing spondylitis blogger

You will survive the uncertainty. Learning to accept the unknowable nature of your illness will enlarge your soul instead of diminish it. Embracing the tension of living with pain while longing for wholeness will make space for you to know what many can’t see — that joy can coexist with pain. What you learn in the dark will create more beauty than you can imagine. Your pain will make you radiant. 

But you don’t have to figure out the purpose of your pain for your life to be meaningful. Trying to parse out why you got sick and what the point of it is could keep you from seeing the good right in front of you. So, look up and live, even though your body sometimes feels like death. See the good right in front of you, even if it’s only the beam of sunshine filling the room you haven’t left all week. Feel its warmth, and let it fill you. Sickness will slow your life, but in slowing you will see the beauty others blaze past.

Courage is not simply something we possess but something we can cultivate. And
the courage you cultivate will be beautiful. Your assertiveness and determination to live well will get you the help you need to find a path forward. You feel stuck, but you aren’t.

Some doctors won’t hear you, and I wish I could spare you from this pain. Their arrogance will make you feel hopeless but know this: You will not lose hope. You *will* be heard. Doctors will eventually listen and see what burns beneath your skin. So keep speaking up about how terrible you feel. Keep insisting a 20-year-old should not feel like you do. You will not be undiagnosed forever. 

You feel like you are the only young person suffering and sick. Let your loneliness move you toward others, even though it may come at great cost. Not everyone will receive you well, but many will. Learn to not be offended by the well-intentioned-but-hurtful things people say in response to your illness. Instead of being resentful, consider honoring your need to be known, seen, and supported as worth the work of helping others know how to relate to you. On the other side of awkward conversations will be the sweetest friendships of your life. 

Pain makes the distance between your life and those of your peers feel far. But it’s not. As you share your pain with safe people in your life, they will learn to let their pain be seen, too. You’ll realize everyone hurts and your sorrow won’t be what keeps you from others, it will connect you to them. 

Your life will be good. I can’t tell you how good or how hard, for that is yours to discover. But know there is good to come. You’ll be wildly surprised by the things you can and will do.

Your tenacity, assertiveness, and willingness to see your own pain in all its fierce darkness will make room for more goodness than you can imagine in both your life and the lives of so many others. I see you in all your fear and overwhelm, with dreams dangling and hope languishing, and you rise again and again. In both your weakness and your strength, you, my younger self, are beautiful. Thank you for never giving up.

With gratitude and respect,

Your older self




iStock-665038220

Woman writing in journal

Blogger K.J. Ramsey was diagnosed with ankylosing spondylitis in her 20s — she was afraid and in pain, and had no idea what the next decade would bring. This is what she would say if she could go back and talk to that 20 year old.

Living with AS

K.J. Ramsey was diagnosed with AS in her 20s — she was afraid and in pain, with no idea what the next decade would bring. If only she could go back and talk to that 20 year old...

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