Strength and Living with Ankylosing Spondylitis
Strength and Living with Ankylosing Spondylitis
By: Maggi Daigle
I met the author of this blog in June 2016 at the Pain Rehab Center Mayo Clinic Rochester, Minnesota. It was there we received treatment to deal with chronic pain through cognitive behavioral therapy, or CBT. She is a lovely human being with the biggest heart. I was so struck by her honesty, kindness, and the ease in which she related to all around her. It is an honor to have Maggi share her story with Keep Moving Help RAD.
Here is a glimpse into her brave story:
Ankylosing Spondylitis, have you heard of it? The answer is likely no.
Ankylosing spondylitis (AS) is a chronic, aggressive form of arthritis, primarily affecting the spine. Ankylosing spondylitis, in severe cases, causes a curvature or hunch in the spine. This is caused by a repetitive process of bones in the spine breaking and calcifying together over time. Calcification of the spine typically starts at the base of the spine and the neck, and works its way inwards. Curvatures in the spine, due to this process, are often visible in elderly patients. Calcification may also occur in the ribs. Supposedly elderly victims are in less pain because the spine has become thick and fused together, making it no longer as painful. Although, mobility is greatly impaired.
Hallmark symbols of Ankylosing Spondylitis include morning stiffness, back pain, new bone growth, and inflammation of the sacroiliac joints (SI joints). Over time, complications often occur in smaller joints, commonly hands, shoulders, knees, ankles, and jaw. Many experience gastrointestinal (GI) complications. Often, one with AS will receive other diagnoses along with the disease such as ulcerative colitis, irritable bowel syndrome (IBS), inflammatory bowel disease (IBD), uveitis, or experience heart complications.
Did you know that roughly 2.7 million Americans have Ankylosing Spondylitis? This compared to more commonly recognized diseases one can question, why is there not more awareness? Let’s put this into perspective:
Ankylosing Spondylitis is more common than the listed diseases combined!
The cause of AS is still unclear. Many individuals diagnosed with the disease have a history of GI bleeding. Chronic GI infections are a main suspect in instigating the disease prominence. There is no definitive testing for AS. A majority of patients diagnosed with the disease test positive for the gene HLA-B27. However, you can have the disease without the gene. Fusing of the spine is not evident in every case. It is more likely to diagnosed in men than woman. More often than men, women are diagnosed by evidence of chronic inflammation of the SI joints which is visible via X-ray. AS is a type of seronegative spondyloarthropathy. In layman’s terms, it is a type of arthritis where no inflammation markers are found in the blood, yet inflammation and redness around the effected joints is commonly visible.
No two cases of AS are the same. This is why diagnosis, in many cases, is delayed. Sufferers of AS experience a wide range of symptoms that are usually unspoken of when referring to information online or in literature. Some struggle for years to find doctors who recognize the severity of AS symptoms. Ankylosing Spondylitis is not comparable to your grandparent’s typical case of arthritis. It has an array of rarely touched upon symptoms, which some could consider the most debilitating aspects of the disease. A few symptoms commonly discussed on an AS online support group consist of: weakness, chronic fatigue, decreased appetite, depression, nerve pain, heat exhaustion, and food sensitivity. For some, complications of the disease and new conditions are to blame on treatment drugs and autoimmune responses to medications.
Currently, there is no cure for AS. There are mediations classified as TNF inhibitors which slow the process of joint destruction, although these drugs can come with risky side effects. There has been scarce research and clinical studies performed on these drugs. Many are too new to determine long-term effects. Diet modification and daily exercise have been proven beneficial.
I was diagnosed with Ankylosing Spondylitis, in late 2015, after a five-year battle with mystery diagnosis. AS is considered an invisible illness. While my body was in complete and utter havoc, all of my test results were coming back normal. From the outside, if I am not walking with my cane, I appear healthy. Underneath, my body is plagued by fatigue and wide-spread, crippling pain.
My story was unheard of during the time I saw well over 25 specialists in my area. I was dismissed and labeled insane, time and time again. I was denied treatment and labeled a drug seeker more times than I was taken seriously. After hundreds of appointments and trials of medications, I had convinced myself that I was dying a slow and painful death. I thought nobody would find out in time to help me. A constant black cloud followed me for years. It stole all of my friends and my personality. It kept me confined to my house, took away my ability to work, do chores, care for myself, to smile, enjoy life, and the ability to maintain healthy relationships.
Hope was regained after my diagnosis. I learned I am, in fact, not alone. I am one out of the 2.7 million Americans fighting in this war against ourselves. Finding my diagnosis was the key I needed to endure recovery. Post diagnosis, I read many personal experiences written by others with AS. Their stories were much like my own… unwillingly giving up years of life to physical illness and the fear of the unknown. Their stories provided me with a sense of belonging in a world where I was alone.
My hardships and stories of others with AS have inspired me to share my personal battle with the disease. There is an importance of putting our experiences out there. We are the ones who need to educate our health care professionals and the general public. If health care professionals worldwide recognized signs and symptoms of AS, there could be significant decrease in the delay of diagnosis. It is time that ankylosing spondylitis becomes as commonly recognized as other diseases. We need to provide hope and quicker treatment to others effected.
You can read my full story leading to my diagnosis here: https://asanecdotes.wordpress.com/diagnosis. I encourage responses, feedback, and sharing of my story. It is also just as important to share positive ways we are coping with the disease. What medications, exercises, diets, etc. are working? What side effects we are experiencing?
Warriors of AS, you are not in this alone! It is time our voices are heard in aspiration to promote education!