When I was 23 years old, I started running a fever and it didn’t go away for over a year. Thankfully, my physician was determined to figure out what was going on inside of me and referred me to many colleagues, including infectious disease specialists and immunologists.
Sometimes, it felt like mononucleosis, which I’d had before, but it wasn’t. I also didn’t have lupus even though some of my symptoms were similar. Later, I pushed back against a diagnosis of fibromyalgia because I already knew too many women who ended up with that “catch-all” diagnosis.
I wanted more information.
It was an incredible relief when I saw a rheumatologist and he put his hand on my shoulder and said, “I know what this is. You have ankylosing spondylitis.” I felt validated that I found the answer to my “What is wrong with me?” question. With an accurate and specific diagnosis, at least I knew I could be treated effectively, even if I didn’t know anything about ankylosing spondylitis, or AS, yet.
More than Back Pain
Despite being a form of arthritis, AS is an autoimmune disease that tends to attack in early adulthood, and some may even experience symptoms as teenagers. The most common symptoms are inflammation, pain, and stiffness most often in the spine and the joints located just above the tailbone, called the sacroiliac joints. People with AS often describe an ongoing, dull pain that feels like it’s coming from deep within their lower back or buttocks, along with morning stiffness. The pain often awakens people from sleep. There’s also inflammation where ligaments and tendons attach to bone, such as the Achilles tendon at the ankle.
As I was pursuing diagnosis, I remembered having persistent back pain, but it was never my main complaint. For me, AS presented with a feeling of general malaise, fatigue and not feeling well. One of the reasons AS is hard to diagnosis is because there is no definitive test for it.
It can take a long time to get diagnosed with AS. From the time I started experiencing symptoms to the time I was diagnosed with AS two years had passed. According to data presented by CreakyJoints, the digital patient group for people with arthritis, at the 2018 European League Against Rheumatism (EULAR) annual meeting, nearly one-third of patients with AS reported that it took more than 10 years to receive a formal diagnosis after seeking medical attention.
Yes, You’re Young. Yes, It Could Be Arthritis
Part of the reason it takes so long for AS to be diagnosed is that many younger adults will assume their persistent back pain (or other symptoms) is because of something that they did. Maybe they slept funny, lifted a box wrong, or had a fall. They assume it is mechanical back pain, which is when the parts of the back (the spine, muscles, intervertebral discs and nerves) aren’t fitting and moving together well. This kind of pain is usually temporary and can be fixed with rest and other treatments, such as physical therapy.
But the symptoms and back pain caused by AS will not go away because it is caused by the immune system attacking its own body. It needs to be treated because the inflammation can permanently damage joints. Most people with AS, like me, use sophisticated medicines, often biologic medications, which both address the symptoms and prevent joint damage.
Sharing My AS Backstory
It never occurred to me that arthritis wasn’t just a disease for older adults. I was barely out of college when my AS symptoms started. But once I started treatment and began to feel better, I realized that I needed to talk about my diagnosis with my family and friends so that they could understand my experience and what to expect. The AS community is also really wonderful. They embraced me and accepted me on my good days and on the days when I have a flare and need support. I track my up and down symptoms using the ArthritisPower free app so that when I see my doctor I can better remember what has happened since our last appointment.
My experience learning about AS and joining the community is helping me to live well with a chronic disease. That’s why when CreakyJoints asked me to share my story and participate in YouTube web series about AS called My Back is Killing Me, I immediately said yes. I want to educate other young people about AS and pay it forward.
Are you wondering if your back pain might be AS? CreakyJoints suggests asking yourself the following questions. If you answer yes to most, it might be a good idea to make an appointment with a rheumatologist.
- Did your back pain start when you were younger than age 40?
- Does your back pain wake you in the middle/second half of the night and prevent you from falling back asleep?
- Does your back pain feel better if you exercise or move around?
- Does your back pain feel worse when you rest or sit for long periods?
- Does your back feel stiff first thing in the morning for at least 30 minutes?
- Does your back pain feel better when you take NSAID drugs, such as ibuprofen?
- Has your back pain lasted, on and off, for more than three months?
- Does your back pain occur with any other symptoms that may seem unrelated, including eye inflammation, inflammatory bowel disease, psoriasis, or pain in your peripheral joints, such as your ankles or knees?
Raising the Voice of Patients: Living with Ankylosing Spondylitis, CreakyJoints, 2017. Available at https://creakyjoints.org/education/ankylosing-spondylitis-patient-guidelines/
Ogdie, A., Nowell, WB., Reynolds, R., Gavigan, K., et al. Poster: Diagnosis Journey of Patients With Ankylosing Spondylitis in theUnited States. EULAR 2018. FI0180