Will I ever have a pain-free day again? This was a frequent question of mine that began my senior year of undergrad, and became a real frustration over the course of the past 5 to 6 years.
My name is Katie and I am a 27–year–old female. I was diagnosed with ankylosing spondylitis (AS) about one year ago. During college, around the age of 20, I first experienced neck pain and headaches that I chalked up to poor posture and excessive sitting from studying. It was manageable but a nuisance. Then came grad school, and the headaches and neck pain continued to the point where I sought out help. My GP performed cervical x-rays and they came back normal. Since the pain was bad enough, I decided to complete a bout of physical therapy anyway. It helped some but the pain was still a daily occurrence. There were times the neck/head pressure was so strong that I would feel nauseous and be unable to focus. I also dealt with chronic fatigue that started around the same time. I thought it was just something I had to live with but I longed for the days when I didn’t feel like I was in a fog.
At the age of 24, I began to have bouts of alternating buttock pain. Not the kind of pain that’s easy to explain to people, when they ask why you’re limping! I was in graduate school obtaining my doctorate in physical therapy (PT), and had recently begun to increase my strength-training regimen. I just thought the new pain was due to the exercises. So being the good PT student I was, I did what I knew best. I treated the pain with muscle release techniques such as foam rolling, stretched out my hips, and began focusing my strengthening on stability exercises. The pain continued. It was generally mild at the time, and would disappear just as quickly as it came. Sometimes for months at a time I would feel fine; I didn’t think much of it.
However, the real sign that something was wrong happened about a year and a half ago. I went to stand up in the middle of the night, and experienced a lightning bolt stabbing pain in the buttock when I stepped onto my left leg. I had never had a pain like this. I hobbled to use the bathroom, but every step was excruciating. I was confused at what was happening. This all made me very nauseous and light-headed. I knew I was about to pass out and actually had to lie on the floor to recover my wits.
After this instance, the pain would happen again and again with varying degrees of severity, lasting anywhere from 3 days to a week. There were fewer and fewer good days in between. It was even beginning to affect my work as a PT. Being a PT involves a lot of movement and requires constant attention to one’s body mechanics. I’d hobble around the clinic trying not to make it too obvious. I mean, if the PT treating you looked hurt, would you trust them with your bodily issues? There were days where I’d have to sit down more, or avoid certain treatment techniques. I couldn’t even demonstrate some spinal mobility exercises without setting myself into a flare. I hate to admit it, but I even began to question if I’d be able to continue down this career path. I love being a PT but my pain was seriously affecting my ability to function.
I had my co-workers try dry needling on me, attempted McKenzie based back therapy, and SI joint muscle energy techniques. Nothing worked, and now my pain was becoming a daily occurrence, not to mention the continued fatigue. I began to feel defeated. I trusted that God would make a way, whether a healing or finding the right treatment plan, and even if I didn’t get an answer, I knew His mercy would be sufficient. I really had to press into this hope during that difficult time.
I have always been an active person. I enjoy hiking and working out at the gym. As the pain worsened, I was unable to perform these activities as often and was very disheartened. In January of 2019, I finally went to my primary care doctor. He ordered x-rays of my sacroiliac (SI) joint. This revealed mild bilateral symmetrical sacroiliitis and sclerosis. I was very surprised. Even though the pain was bad at times, I was floored that there were actual structural changes going on in my body. Prior to the x-ray, I was beginning to think it was just muscular, and I was over–exaggerating. My primary doctor wanted to send me to an orthopedic for an SI joint cortisone injection, but I did my own research on SI inflammation causes and came across ankylosing spondylitis.
Using my own experience as a PT, I decided I should see a specialist prior to getting an injection. I wanted to know the “why” behind the pain. I saw a physiatrist, a physical medicine and rehabilitation doctor. She agreed that we needed to rule AS out before moving forward. She did bloodwork looking for the HLA-B27 gene (a hallmark gene seen in many people with AS), along with rheumatoid factor and antinuclear antibody (ANA) tests. The gene was negative, RF was negative, but ANA was positive. The physiatrist said that because I was HLA-B27 negative it could not be AS, and a cortisone injection would be my best treatment option. However, she advised that I see a rheumatologist due to the positive ANA. Again, I had to use my own judgment here and advocate for myself. I decided to hold off on the injection and see what the rheumatologist had to say.
In February of 2019, I saw the rheumatologist for the first time. She did not agree with the physiatrist or my primary doctor and said the injection would only act as a Band-Aid. She, like myself, believed there was an underlying cause and wanted to get to the bottom of it. She ordered an MRI of my SI joint. She also told me that you do not need the HLA-B27 gene to be diagnosed with spondyloarthritis.
The MRI was consistent with my previous x-ray, and revealed the hallmark feature of AS – inflammation of the SI joints on both sides. However, because my symptoms were not exactly aligned with AS, she diagnosed me with seronegative spondyloarthropathy. She suggested I start a biologic TNF inhibitor to help keep my immune system from attacking my spine. Finally, I was getting answers! If my ANA test had not been positive, I wouldn’t have been sent to the care provider who knows the most about diagnosing AS, and I would have gotten the cortisone injection, postponing a diagnosis even further. No wonder it takes so many years for most women to be diagnosed!
Although answers were coming about, I was afraid to start on such a strong medication. My internal dialogue consisted of, “Increased cancer risk! Potential increased risk of infection! I don’t think I feel bad enough yet to go onto this.” Thankfully, I have wonderful co-workers and a wise mother who convinced me to get another rheumatologist’s opinion. In the interim, the pain was still quite bothersome at times. If I sat on a hard bench, or on any surface for that matter, I would get a burning ache in my low back. I was still getting sharp buttock pains that didn’t allow me to walk or work out as I’d like. I passed up social events and cried a lot more than I’d like to admit. I began to feel fed-up with conservative treatments.
Then I saw the second rheumatologist. After reviewing my history, doing her own physical exam, and looking at the x-ray and MRI she diagnosed me definitively with AS. Her confidence in diagnosis made me feel much more at ease in moving forward. She explained to me that biologics were the only way to slow the progression of my AS. She said I could wait but eventually it would be inevitable. After much prayer and deliberation, I jumped on board.
Let’s just say I am over the moon that I did! Humira has been a game changer for me. Within the first month, the nagging buttock pain was gone. I could exercise and hike as much as I wanted without going into a flare. I have been on it since Halloween of 2019 and have had no flare-ups since. No more lightning-bolt, burning pain! My pain finally had a name, and I no longer felt as if I were overreacting. It was not in my head.
The fatigue is still there and I still feel general achiness some days, but overall I am doing quite well. I don’t know what the future will look like but one thing I can say with certainty is that God’s hand was orchestrating the whole diagnostic process. I felt peace and comfort in the storm, and hope in His faithfulness even when there was no end in sight. The misfortune I went through has allowed me to become a more empathetic physical therapist and better educator.
My word of advice to those still looking for answers: Do not give up or give in. If you feel something is being overlooked or if your doctor is not confident, seek another opinion. You know your body best and you deserve a doctor that believes you and desires to work with you. Educate yourself and be your own advocate!