A Year Of Unexplained Agony And My Journey To Diagnosis
“Ankylosing” and “spondylitis” are two Latin words that are not in the average person’s vocabulary. So when it suddenly felt like a knife was being plunged into my back with every step I took, I didn’t have the words for it. I didn’t have anything. All I had was agony, confusion, and theories from everyone around me, including, “you probably just pulled a muscle” or “it must be an overuse injury” or “it’s probably from slouching too much.” No one ever guessed that I had developed arthritis at the age of 18.
The first time
I will always remember the first time I felt it. It was the morning after I had moved out of my first-year university dorm and I was brushing my teeth. As I leaned forward over the sink, I felt a sharp pain in my lower back that made me wince and gasp. I thought, “what the **** was that?” From that moment onward, the pain progressed. I went from being healthy and thriving to walking with a limp within a matter of days.
I spent that summer in pain, trying to keep up with friends, embarrassed of my limp. Many nights I woke up crying and unable to move, in pain that I can only describe as unbearable. It didn’t make any sense! What was my body doing to me? I saw a few different doctors, who suggested various causes, like growing pains or sports injuries related to my involvement in figure skating. No doctor seemed to have a solution. I started visiting the chiropractor weekly. She explained how the adjustments would help and advised me on posture. The pain did not cease.
The pain didn't go away
When I returned to university in the fall, life was treacherous and foggy. I attempted to continue life as normal through a haze of constant pain. I lost count of doctor's offices and bloodwork referrals. A sports doctor referred me to physiotherapy, which I went to twice a week. It wasn’t helping; in fact, the pain was progressing and spreading to other joints in my body. I was being prescribed pills like Prednisone and Tramadol, even though the root cause of my pain was still a mystery.
So I went to the ER
The boiling point that led to my diagnosis came on a day when I was in fiery, persistent pain that was spreading to my whole body. The only thing I could think to do was visit the ER. When I was finally seen, I was exhausted from the pain and fighting back tears. I couldn’t move into any position that the doctor asked. He left the room and returned a while later with a prescription for Percocet.
“Hmmm,” the doctor said. “It seems like something called ankylosing spondylitis, which is odd because it usually occurs in males.”
He mentioned a referral to a rheumatologist and sent me home.
I finally saw a rheumatologist
It was four months later, in February of 2018, when I had my first appointment with a rheumatologist. After she ran bloodwork and listened to me describe my symptoms, she confirmed the diagnosis of ankylosing spondylitis.
And I got a plan
This confirmed that my pain was not due to growth or sports, but something out of my control and permanent. That was one of the hardest things to grasp — that it wasn’t going away. I remember being handed a pamphlet about AS and being sent down to radiography. I was overwhelmed, relieved, and terrified all at once. Right away, I was started on a treatment plan including Humira, an immunosuppressant injection. In the following weeks, I dealt with the shock and grief of the diagnosis and learned how to use an auto-injector.
Most healthcare providers never mentioned AS
In total, my journey to diagnosis took less than a year after the onset of my symptoms. I was very fortunate to access the healthcare that I did; otherwise, I would have been suffering for a longer period of time. Unfortunately, AS is not widely known, even though it is a somewhat common disease. Many of the doctors, physiotherapists, and chiropractors I saw never even suggested the possibility of an autoimmune disease. Because of my diagnosis, I was able to start treatment that has not “cured” the disease or eliminated the pain, but has improved my quality of life greatly.
At least it has a name
Now, I have a term to explain my symptoms: ankylosing spondylitis. Although it was heartbreaking to receive news that I would be living with a chronic illness for the rest of my life, my diagnosis led me to the understanding and treatment that I needed. It was a difficult and taxing journey that I never could have predicted when I felt that very first stab of pain.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?