Everyday Health’s executive editor Denise Maher sat down with Suleman Bhana, MD, to discuss ankylosing spondylitis, an inflammatory autoimmune disease that can be difficult to diagnose. In this conversation, Dr. Bhana, a rheumatologist in New Jersey and the former chair of the American College of Rheumatology’s communications and marketing committee, explains this form of arthritis and its symptoms. Read on to learn about why ankylosing spondylitis (AS) is hard to diagnose, and how AS is related to other autoimmune conditions such as rheumatoid arthritis and ulcerative colitis.

Everyday Health: What is ankylosing spondylitis (AS)?

Dr. Suleman Bhana: AS, or ankylosing spondylitis, is an inflammatory autoimmune disease. Autoimmune means a condition where the immune system is overactive, hyperactive, and instead of doing what we want, which is to help fight infections, the immune system is attacking its own body. In this case it could attack the joints, causing back pain and stiffness, but it may in fact even attack other body systems besides the back, such as the eyes, the skin, or the intestines, and may be part of a spectrum of disorders that are inflammatory.

EH: How is AS different from rheumatoid arthritis, lupus, and ulcerative colitis?

SB: Ankylosing spondylitis tends to affect the joints more heavily, including the back or spine. Some autoimmune diseases, in contrast, like rheumatoid arthritis and lupus, don’t really have much spine involvement, but in ankylosing spondylitis the spine could become heavily involved, leading to back pain, stiffness, and loss of function. It may affect people quite early in their lives, not just in their fifties or sixties, but even in their twenties and thirties. It’s important to raise awareness about the disease and encourage people, if they suspect symptoms, to get checked out by a rheumatologist sooner rather than later.

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EH: We’ve heard that with AS and other rheumatic diseases it can take a really long time to get a diagnosis. Why is that?

SB: It’s complicated why that may happen, but unfortunately diagnosing ankylosing spondylitis is not as easy as diagnosing appendicitis, for example, where you do an imaging test and know within a few minutes whether somebody has a particular illness. This diagnosis depends on many factors: a thorough history, a physical exam, laboratory testing, imaging testing. All this takes time for the evaluation to come back. And even then, early disease states may not be readily evident. There are issues to do with the diagnostic testing alone, and people may not know if they have the symptoms until the disease has progressed well on its way. The diagnosis may come 10 years into the onset of symptoms. And then, finally, access to care may be another concern for patients; they may have a problem finding a rheumatologist in their local area.

EH: And what’s your typical patient complaining of? Joint pain?

SB: The way we distinguish inflammatory joint pain, which is what happens in ankylosing spondylitis, from mechanical joint pain or mechanical back pain, is, No. 1, chronicity. Is it going on more than three months continuously, as opposed to mechanical pain, which may last for a few weeks and go? And is there stiffness? Stiffness means you feel like the Tin Man from The Wizard of Oz, where you feel like you’re made of rusted metal; and is that predominantly after you’ve been sedentary? For example, when you wake up after sleeping or if you’re in a long car ride or plane ride, if the stiffness lasts 45 minutes, an hour, two hours, that could be a red flag that the pain is inflammatory and may prompt further evaluation.

EH: You mentioned the importance of early diagnosis. Can you talk a little bit about that? Is AS a progressive disease?

SB: Most autoimmune inflammatory conditions are, or can be, progressive. That is, they may further affect the joints if nothing is really done over time. They can also be multisystemic; so besides joints, other body systems can be affected, such as the eyes, skin, intestines. And then lastly there may be comorbidities, meaning that if the chronic inflammation goes unchecked, it may lead to other problems, such as increased risk of heart attacks, cancer, and stroke.

EH: It sounds like there’s good treatment available today if the disease is caught early. What was treatment like 20 to 30 years ago? Has it changed?

SB: Treatment has changed over the past 20 to 30 years. Currently we try to approach treatment for ankylosing spondylitis in a holistic way; there is a very important role for lifestyle changes like diet, exercise, and nutrition, and there’s a role for medical treatments and medications as well. One alone is not enough; having this holistic approach is really important for people’s well-being.

EH: When we talk to people living with rheumatoid arthritis and some of the other diseases you mentioned, we hear a lot about related mental health conditions like anxiety and depression. What is the connection between mental health issues and AS?

SB: There are several connections. In general, people with autoimmune diseases have a higher risk of depression, anxiety, and mental health problems. There are many reasons for that. One can imagine if you’re living life in chronic pain or you’re debilitated and can’t do the things you want to do to enjoy life, that can cause problems in your mood and your function.

Other impacts that this may have is that pain itself is very complicated. Scientists are starting to realize this more and more. That pain is not so much that a joint is dysfunctional and that’s why it hurts, but pain can also come from the brain — that’s called central pain. The brain itself can go on autopilot and try to hyperstimulate pain or even hyperamplify pain, and that tends to happen more often in people that have a history of depression or anxiety disorder.

As we treat people’s physical health, when managing a disease like ankylosing spondylitis, mental health is just as important, and we can’t disconnect our top part of us, our head, from our bottom part of us. The two are intricately connected.

EH: We talked before about how long the wait is to get an appointment with you and many rheumatologists. Why is that?

SB: This is a very challenging situation, access to care for rheumatology. It’s a very complicated discussion beyond the level of what we can talk about right now. But in general, it’s several factors. One is that there is not enough funding for graduate medical education, not just for rheumatology, but for many specialties, to train enough doctors in the U.S. fast enough to meet the current need. There’s also a fairly large swath of older rheumatologists that may be retiring soon or are retiring now from the workforce. Lastly, there is a prevalence or rise in the incidence of rheumatic diseases within the U.S. as well as many other countries.

EH: Any theories as to why?

SB: I’m not exactly sure, to be honest; there may be several reasons. We suspect the cause of autoimmune diseases is a very complex interaction between genetic risks and environmental risks. And it’s possible things in the environment people are encountering now are stimulating the immune system more than previously. It could also be a matter of awareness or selection bias — these people may have been there all along, but were never properly diagnosed. And as more awareness comes around, such as this campaign for ankylosing spondylitis awareness, people are being checked out and evaluated earlier.

* This interview was conducted as part of an ankylosing spondylitis awareness campaign #MonsterPainInTheAS.

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