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Ankylosing Spondylitis: One of The Most Painful Diseases You’ve Never Heard of

Updated: Jun 20, 2018

By Dr. Andrew Cummins

Ankylosing Spondylitis

Ankylosing Spondylitis is a chronic inflammatory disease that mainly affects the spine and pelvic region, but can affect the ribs, knees, feet, shoulders, hands, and many other joints. It can also affect organs and tissues outside the joints such as the eyes, heart, skin, and gut.

The symptoms of Ankylosing Spondylitis usually start in the low back area of the sacroiliac joints that can cause alternating buttock pain. These symptoms usually start in the late teens to mid 20’s. The pain can be so severe and destructive to the joints that an individual might not be able to walk or perform other normal daily activities.

Symptoms of this condition can start earlier around ages 12 - 16, but pain is usually experienced in areas that are sometimes not associated with Ankylosing Spondylitis such as in the heel and the tendon below the kneecap.

Diagnosis of the condition can take up to 8 to 10 years after symptoms have started because there is a gradual progression of symptoms and changes usually don’t show up on imaging until later. This is unfortunate because lifestyle strategies such as good posture and walking throughout the day need to be implemented early to slow or stop spinal breakdown, inflammation, and fusion.

Living with Ankylosing Spondylitis

The pain and stiffness of AS is usually the worst upon waking up in the morning and late at night. In the morning it can take anywhere from 2 - 3 hours or longer for an individual suffering from AS to start moving well.

The symptoms of pain and stiffness are worse with sitting and standing and are better with movement and walking. For this reason, it is very difficult for individuals living with AS to perform jobs or activities that require a lot of sitting, standing, or bending throughout the day.

It is hard for most people to understand the pain, immobility, and limitations someone living with AS experiences on a day by day and moment by moment basis because they have never heard of Ankylosing Spondylitis.

One of the biggest frustrations I hear from individuals living with AS is that their employer, family, and friends don’t understand the severe pain and struggles they are experiencing. Sometimes they are accused of being lazy or exaggerating their symptoms. The truth is, individuals with AS usually don’t show how much pain they are in. They will try not to show how much pain they are experiencing and push through trying to make the best of life and their situation.

Understanding Ankylosing Spondylitis

One of the first things to understand about someone suffering with AS is that prolonged sitting or standing usually means pain and discomfort. Walking relieves the pain and stiffness of Ankylosing Spondylitis. If you know someone with AS or they are your employee, they need to walk, walk, walk. If they do need to sit it is essential that they have correct posture with an ergonomic chair and the computer or book is at eye level so their chin is back, eyes are looking straight forward, and the back of the neck is long and straight.

The sitting needs to be broken up with at least 5 minutes of walking about every 30 minutes. The amount of time an individual with AS can sit before they experience pain and stiffness may vary, but most of the time the limit is 30 - 60 minutes before they need to take a brisk walk. If there is an acute flare of symptoms walking could be painful at first, but after a certain period of time pain usually starts to decrease with continued walking.

The Pain of Ankylosing Spondylitis

Another major misconception about Ankylosing Spondylitis is that the pain experienced by the individual is not that bad. The pain and inflammation associated with AS is a deep chronic pain that can change location from one day to the next. At the same time the pain of AS can be sharp, acute, and stabbing. One day pain can be experienced in the upper part of the spine, the next day the lower spine and the ribs. On a given day or night pain can be experienced in the right hip and then a few hours later in the left hip.

Some days the inflammation can affect one eye, other days the inflammation can affect the gut causing digestive symptoms. The pain can sometimes be so bad that an individual is unable to walk. The pain and inflammation is unpredictable and can be extreme and demoralizing. If there is pain and inflammation experienced in the ribcage taking in a deep breath can be difficult and painful. The act of sneezing alone can cause such extreme rib pain that it can feel like a rib has cracked.

Even though the pain of AS can move from one location to another, there is always some form of pain. Since the pain is constant, individuals suffering with Ankylosing Spondylitis can also experience anxiety and depression which further affects quality of life.

Ankylosing Spondylitis and Chronic Fatigue

There are many reasons an individual with AS can have chronic fatigue. Constant chronic pain and inflammation wears the body down making someone feel absolutely exhausted. Most of the time individuals with AS don’t sleep very well at night because of deep spinal and hip pain. This pain and stiffness can occur in other areas of the body such as in the ribs, sternum, and knees.

If the pain and stiffness occurs in the back muscles and spine there can be constant tossing and turning to find the right position to relieve the pain. Most of the time no relief for the pain is found so the individual gets very little sleep and the sleep that is achieved is of poor quality.

In addition to the pain and stiffness in the morning, this poor sleep quality is one of the reasons individuals will experience extreme brain fog and lack of focus in the morning. This brain fogginess can last 2 - 4 hours and sometimes never really goes away throughout the day. There are many other factors that can contribute to the brain fog such as high levels of inflammation and poor digestive health.

Ankylosing Spondylitis and Anxiety & Depression

Constant inflammation and pain is a constant stressor on the human body and can elevate stress hormones. In addition, constant inflammation can increase the burn rate of brain chemicals. Both of these can lead to the symptoms of anxiety and depression.

Unfortunately most of the time when an individual with Ankylosing Spondylitis experiences pain, anxiety, and depression their symptoms are treated separately. They will see several health care professionals for the different conditions and symptoms and be given medications for each of their concerns. The reality is the symptoms of pain, anxiety, and depression usually have a common source and cause.

Gut inflammation and an imbalanced gut microbiome can lead to a leaky gut and inflammation throughout the body. This process is referred to as the gut-brain connection and the gut-joint axis.

Ankylosing Spondylitis and Digestive Health

Individuals living with AS can experience digestive problems all the way from severe inflammatory bowel disease to diarrhea or constipation. Others will experience gas, bloating, indigestion, and malabsorption of nutrients.

Even though digestive symptoms might not be experienced by someone living with AS there is usually some kind of gut inflammation. Just like the pain, chronic fatigue, anxiety and depression that are associated with AS, digestive problems can dramatically affect quality of life.

Hope with Ankylosing Spondylitis

I am living proof that a life worth living can be achieved with Ankylosing Spondylitis. I have lived with this chronic inflammatory disease for over 20 years. I remember experiencing extreme pain in my heels, knee, and hips as young as 12 years old. I started experiencing low back, sacroiliac, and alternating buttock pain when I was 18. There were days the pain was so bad in my sacroiliac joints that I couldn’t walk down the hallway without the assistance of a chair in front of me. Today I still live with Ankylosing Spondylitis and deal with the day to day struggles of this chronic disease. I experience the pain and achiness of sitting or standing too long and just simply waking up in the morning.

What has changed for me over these last 20 years is that my quality of life has dramatically improved. I have implemented tools and lifestyle strategies that have reduced my pain and improved my mobility. Anxiety, depression, and chronic fatigue are things of the past. My digestive health, from which it all began, has dramatically improved as well.

My mission is to provide resources through blog articles and videos to share the tools, lifestyle strategies, and research that has helped me, my clients and patients improve our quality of life. I want to empower you with knowledge so you can find hope living with Ankylosing Spondylitis.




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