As with most chronic conditions, ankylosing spondylitis (AS) can be difficult to explain to others. This has resulted in a lot of misconceptions about the disease. That’s why we’ve gathered this list of myths and debunked them for you.

1. Myth: AS affects only your back

The distinguishing feature of AS is that it mainly affects the back. One of the main signs of the disease is inflammation of the joints between your spine and pelvis (sacroiliac joints). Inflammation can spread to the rest of your spine.

Lower back pain and stiffness are common symptoms, especially upon awakening

AS is not confined to your back, though. It can spread to other joints, including your:

  • shoulders
  • ribs
  • hips
  • knees
  • feet — primarily heels

In some cases, people with AS develop eye inflammation. In rare cases, it can damage the lungs or heart.

So it’s more than a back problem. It’s an inflammatory disease that can affect your whole body.

2. Myth: Young people don’t get AS

Most people think of arthritis as something that occurs with aging. But if you’re young and have AS, you’re far from alone.

AS symptoms typically begin to appear from the ages of 17 to 45. It can also affect children and older people.

It’s not a disease of aging, and you didn’t do anything to cause it.

3. Myth: Exercise makes it worse

If you’re experiencing back pain, your instinct may be to avoid physical activity. You probably should avoid heavy lifting and other activities that strain your back.

The flip side of that is the right kind of exercises can make you feel better right now and in the long run. In fact, exercise is an important part of AS treatment and it can help preserve flexibility.

Before starting a new exercise routine, talk with your doctor about which exercises are best for you. Then, start with something easy and gradually build up your routine.

Consider consulting with a physical therapist or personal trainer familiar with AS. They can show you how to perform exercises safely and effectively. Once you gain confidence, you can work out on your own.

Strength training can help build muscles to assist in supporting your joints. Range-of-motion and stretching exercises improve flexibility and ease stiffness.

If exercise is hard, try working out in a swimming pool, which can be a lot easier and less painful, while providing tremendous health benefits.

It also helps to be mindful of your posture, keeping your spine as straight as you can at all times.

4. Myth: A fused back and severe disability are inevitable

AS doesn’t progress at the same rate or in the same way in everyone with the condition.

Most people do have periodic episodes of mild to severe inflammation, stiffness, and back pain.

Repeated bouts of inflammation sometimes cause the vertebrae to fuse. This can severely limit movement and make it impossible to keep your spine straight. Fusion in your rib cage can reduce lung capacity and make it hard to breathe.

This doesn’t happen to everyone. Many people with AS have milder symptoms that can be effectively managed. It may require some lifestyle or occupational changes, but it doesn’t necessarily mean you’ll have severe disability or a fused back.

5. Myth: AS is rare

You’ve probably heard a lot about multiple sclerosis and cystic fibrosis, but neither affects as many people as AS does.

About 2.7 million American adults are living with this condition. It’s more common than many people realize.

6. Myth: There’s nothing I can do about it, anyway

AS is chronic and progressive, but that doesn’t mean there’s nothing you can do about it.

The first step is to work with your doctor to create a personalized treatment plan. The short-term goal is to ease symptoms. The long-term goal is to try to minimize or prevent disability.

There are many medication options, depending on your particular symptoms. Some of them are:

  • disease-modifying antirheumatic drugs (DMARDs): to control disease progression
  • nonsteroidal anti-inflammatory drugs (NSAIDs): to lessen inflammation and pain (high doses may prevent disease progression)
  • corticosteroids: to fight inflammation
  • biologic agents: to relieve symptoms, slow disease progression, and prevent joint damage

Joint replacement surgery is an option for severely damaged joints.

Regular exercise can build muscle, which will help support your joints. It can also help keep you flexible and help reduce pain. Exercise also helps you maintain a healthy weight, which is easier on your back and other joints.

It’s also important to be mindful of your posture when sitting as well as standing.

Be sure to keep your doctor informed about your symptoms as they change. That way, you can adjust your treatment to reflect those changes.

7. Myth: AS isn’t common in women.

While it’s true that men are twice as likely to have AS than women, before MRIs were used to diagnose the disease, it was believed that AS was three times more common in men.

This was probably because men are more likely to have bone changes that X-rays can detect. Women with AS are more likely to experience inflammation, which can be detected in an MRI.

8. Myth: AS isn’t a genetic disease.

AS may be hereditary. About 1 out of 5 people with AS have a relative with the disease.

More than 85 percent of AS patients test positive for a gene called HLA B27. However, only 1 in 15 percent of people with this gene develops AS, meaning there must be other contributing factors.

9. Myth: AS affects all races the same way.

AS is three times more common in white Americans than in Black Americans.

About 8 percent of white Americans and 2 to 3 percent of Black Americans carry the HLA B27 gene associated with AS.

A 2019 study that examined data for 10,990 people with AS between 1999 and 2017 found that the disease may be more severe for Black Americans, who had higher inflammatory markers and more coexisting conditions than white Americans.

10. Myth: AS is easy to diagnose.

There isn’t a specific diagnostic test for AS. To rule out other possible causes of your pain, your doctor may perform a detailed physical examination, with emphasis on the peripheral and spinal joints, and order blood tests and imaging tests such as X-rays or an MRI.

In the early stages of AS, imaging tests may not show spinal inflammation or fusing of the spine, so a diagnosis may sometimes take years.

11. Myth: AS is strictly an autoimmune disease.

AS is classified as an immune-mediated inflammatory disease.

This means that it is both an autoimmune disease, which occurs when your body attacks healthy tissues, as well as an inflammatory disease that causes swollen or inflamed joints.

12. Myth: AS is a form of rheumatoid arthritis.

Although AS and rheumatoid arthritis (RA) are both common rheumatic diseases with similar symptoms, they are not the same thing.

AS involves bone overgrowth, while RA is characterized by bone erosion.

Another difference is that AS results in inflammation where your tendons and ligaments attach to your bones (enthesitis), but RA results in inflammation of the membranes inside your joints (synovitis).

13. Myth: AS can be cured.

There is currently no known cure for AS. Still, medications, a healthy lifestyle, and a tailored exercise program may help relieve the pain, preserve some mobility, and prevent damage to your joints.

14. Myth: AS doesn’t go into remission.

About 1 percent of people with AS get what’s known as disease burnout and enter a long-term remission, which is considered a low level of joint stiffness and pain.

Clinical remission of AS may be determined by various measures, including the Ankylosing Spondylitis Disease Activity Score (ASDAS) and the Ankylosing Spondylitis Quality of Life Scale (ASQoL).

15. Myth: People with AS shouldn’t take NSAIDs.

Nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen (Advil and Motrin) and naproxen (Aleve) are a common treatment for relieving the pain and inflammation associated with AS.

However, over-the-counter and prescription NSAIDs may have side effects.

The Food and Drug Administration (FDA) warns that they may increase the risk of having a heart attack or stroke. NSAIDs may also increase your risk of kidney disease and ulcers.

A 2019 study of 628 people with AS found that those who continuously took NSAIDs over a 7-year period were 12 percent more likely to develop hypertension than those who took NSAIDs less frequently.

To help prevent these health issues, your doctor may recommend the lowest possible dose of an NSAID for the least amount of time.

16. Myth: There are no complications associated with AS.

Besides the spinal pain, people with AS may experience the following complications and comorbidities:

  • Osteoporosis: More than half of people with AS also have this disease that weakens their bones.
  • Uveitis: This eye condition that can cause blindness affects about 26 percent of people with AS.
  • Heart disease: Up to 10 percent of people with AS have heart issues. Having AS may increase your risk of heart disease and stroke by 25 to 60 percent.

17. Myth: People with AS will always have a poor quality of life.

Although a 2018 Swedish study suggested that people with AS may have a lower health-related quality of life than people who don’t have AS, progress is continually being made in improving treatments for the disease.

A 2020 study in China found that when 91 people with AS took adalimumab (Humira) for six months, the drug significantly reduced their symptoms, and their physical function improved.

As treatments improve, so could the quality of life for those who have AS.

It’s hard to predict how your AS will progress in the long term. One thing that is certain is that it will require lifelong disease management.

Good medical care, exercise, and medications are key to managing your condition. Learning all you can about this condition will enable you to make good decisions for your health and well-being.