Living with Ankylosing Spondylitis

A Multi-faceted Approach

Young woman doing yoga.
Sofie Delauw / Getty Images

Ankylosing spondylitis (AS) is more than just arthritis. It is a chronic, inflammatory disease of the spinal joints and other joints, like the shoulders, hips, and knees. Ankylosing spondylitis may create further havoc in the body by causing fatigue, eye pain, and even heart or lung problems.

Despite the complexity and "whole-body" involvement of AS, you can live well with this disease—it may require some preparation and resiliency, but it can be done by taking it one step and one day at a time.

Emotional

The pain experienced by those with ankylosing spondylitis has psychological consequences, commonly causing feelings of helplessness, fear, anxiety, and sadness. These are normal human responses to a difficult situation, and it's ok to feel however you feel. However, if you think your feelings are getting out of hand, you may want to find additional ways to cope.

Watch out for signs of clinical depression. Depression is more common in people with AS than in the public at large. If you have stopped enjoying activities you once found pleasurable or are feeling sad every day, please contact a healthcare professional. Depression is a very real disease and can be treated with an antidepressant and/or talk therapy.

Even if you are just a little down, it never hurts to reach out to others to connect. Remember to keep doing the activities that give you pleasure and enjoyment.

Some people find comfort in complementary therapies like yoga, tai chi, or meditation. While there is limited research into the role of mind/body therapies in AS, they may help you feel good and/or de-stress, if nothing else.

Physical

Exercise

Exercise is a critical part of the treatment of ankylosing spondylitis. Your doctor or your physical therapist can show you safe exercises that will increase your strength, flexibility, and mobility. Exercises to help improve your posture can also lessen the possible long-term complications of the disease. Gentle exercises like walking and swimming can be particularly beneficial. In general, exercise will help lessen the disease's impact on your life, and it may improve your mood as well.

Alcohol Use

Some evidence suggests that excess alcohol use may worsen disease symptoms in AS. For optimum functionality (and for your overall health), don't drink to excess.

Smoking Cessation

Research shows that smoking is linked to a worse disease state, meaning more AS-related pain and inflammation, so it's critical for people with AS to quit. In people with AS, smoking is also linked to reduced functioning in everyday life, as well as a poorer quality of life—and this is irrespective of how long a person has had AS, their age, or their gender.

In addition, ankylosing spondylitis is linked to disease complications like heart and lung problems. Of course, smoking too can negatively affect the heart and lung (regardless of whether a person has AS). This is a double whammy, so stopping smoking is really in your best interest.

When you are ready, talk with your doctor about the best strategy for you to stop smoking. The good news is that there are a number of ways (medications, counseling) and often a combination of them works the best.

Diet and weight

Maintaining a healthy weight is also important if you have AS. Extra pounds can put additional strain on your joints. The good news is that you can attain a normal weight through calorie restriction, daily exercise (which will help maintain spine mobility anyway) and a nutritious diet. Make losing or maintaining your weight a family or partner affair, so the focus is on living healthily and feeling well.

Social

It can be very helpful to reach out to others when dealing with AS. It’s important not to let the stress of the disease make you feel isolated and alone. Non-profit groups like the Spondylitis Association of America can be a powerful way to connect with others who are successfully dealing with the condition. Both on-line and in-person groups are available. Sharing notes with others can be a great source of both practical information and emotional strength.

Try to communicate directly and clearly with your friends and family members about your condition. Especially when you are having a disease flare, you may need more support. Let people know your limitations, and don’t be afraid to ask for help. 

Practical

Finding the Right Health Team

If you have ankylosing spondylitis, it is important to work with a healthcare team that has experience with your form of arthritis. The first step is finding a rheumatologist—a doctor who specializes in diseases of the joints and muscles. Even among rheumatologists, some tend to focus on specific diseases. Be sure to find a rheumatologist who has experience seeing patients with ankylosing spondylitis.

Be assured that it is OK to seek out second opinions or change therapists (or doctors). The doctor-patient relationship and the therapist-patient relationship is a two-way street, meaning both parties have to feel comfortable and at ease. A healing, trusting partnership is vital to your AS and overall health.

Preparing for Flares

Like many other chronic illnesses, people with AS experience flares or worsening of their symptoms, notably back pain or other joint pain that can limit functioning. Having a plan in place on what to do when you or your loved one's pain flares can reduce any unnecessary panic.

This plan may include an ordered list of medications you should take to alleviate the pain—including dosages, how long you should wait between dosing, the maximum dosage allowed for that medication, and side effects to watch out for.

The plan may also include reminders about when to use a hot versus cold pack on your area of pain, as well as exercises or stretches you should engage in or avoid during a flare. Warning signs that warrant a phone call to your doctor is also a good idea to include.

It's also best to plan ahead of time how to manage daily activities like work tasks, driving, or chores. Consider asking a friend or family member to assist you when you are experiencing a flare. This way you can focus on healing and easing your discomfort, without worrying about life's everyday stresses.

A Word From Verywell

There are things you can do to ensure a healthy, happy life with AS. This is not meant to minimize the challenges that your disease may present. It can and will be difficult for some people more than others. But with a take-charge attitude, you can care for your body and mind the way it deserves.

Was this page helpful?
Article Sources