My journey with spondylitis

This is the long version of what I’ve gone through with spondylitis, for anybody curious about what kinds of symptoms I’ve had. Maybe you’ll find something to identify with, or maybe you’ll get a better understanding of spondylitis. Or, maybe you’re looking for a shorter description over here.

(If any of the medical terms get too confusing, check out the quick guide to medical terms.)

A slow realization

The first thing I had a problem with were my Achilles tendons. At the time, and even years later, I didn’t realize that it was connected to my later symptoms, but it’s actually not uncommon for tendonitis to be the first sign of spondylitis in children. This is because enthesitis is associated with spondylitis.

(The science: with spondylitis, the immune system can attack the entheses, or the places where the tendons and ligaments attach to the bone. This causes inflammation of the entheses, or enthesitis. It can also lead to inflammation of the tendons, or tendonitis. Achilles tendonitis and plantar fasciitis are common with spondylitis.)

Next I had on-and-off problems with my right hip and knee. The ache would start when I sat for too long, and soon it was in my low back, too. Then it became a pain that felt like it was going down the back of my leg. When I went to doctors, they tended to focus on one problem, usually my back. They would take x-rays of my back, find nothing wrong, and stop looking. No one looked at the back pain and hip pain and knee pain as one.

(In children, spondylitis will often start as arthritis of a major lower joint, such as the knees or hips. Later, it will progress to arthritis of the spine.)

Soon, though, my back and hip and knee problems took back seat to something else. Freshman year of high school, I joined marching band. The exercise was probably good in general for my arthritis, but I ended up messing my shoulder up pretty badly. No one could figure out what was wrong, and a year of physical therapy for “muscle weakness” didn’t help. I know now that it was probably some kind of muscle damage, complicated by inflammation from my arthritis. Aching shoulder pain haunted me throughout high school, and while the other joints still hurt, I definitely didn’t notice them as much as my shoulder.

Junior year of high school, though, I started getting more symptoms, like unexplained fevers and chills along with spreading pain. Slowly, more joints became effected – my wrists, my hands, my neck. My chest would hurt. And still no one could figure out what was wrong.

Someone finally told my mom that I should see a pediatric rheumatologist. The first one I saw had no idea what was wrong either, but he seemed to like the mystery of it. Which meant I only had to wait three months to see him again. Three months. With no treatment in the meantime.

I got so frustrated that I started doing research myself. If my sister hadn’t started getting massively swollen joints, I probably wouldn’t have looked into arthritis. At the time, I didn’t even know that there were types of arthritis. I learned about juvenile idiopathic arthritis (JIA), which is used to diagnose arthritis in people whose symptoms start before they’re 16. JIA is called inflammatory arthritis because it’s caused by the immune system attacking the joints.

The type of JIA that seemed to fit my symptoms was enthesitis-related arthritis (ERA). It includes symptoms like tendonitis, knee, hip, and back pain. Having some idea what might be wrong really made life easier as I kept going to doctors. When the next doctor that I saw tested my back flexibility and brought up ERA, she was shocked that I’d already heard of it.

Unfortunately, I soon had to move on to adult rheumatologists, which presented some problems. A lot of rheumatologists hold different opinions about the existence of ERA, juvenile spondyloarthritis (JSpA), and adult spondyloarthritis (SpA). Some will say that ERA doesn’t exist, that juvenile SpA is the same thing.

(Spondyloarthritis is often used as a synonym for spondylitis. It is the family of arthritis that includes ankylosing spondylitis (AS) and other diseases that involve arthritis of the spine.)

The problem is, ERA seems to have criteria that can be applied more broadly than spondyloarthritis criteria, making a diagnosis quicker to come to. Blood work, x-rays, and MRIs can be used to diagnose arthritis, but a lot of blood work and x-rays will come back negative in people who have SpA. It’s also common that women have less damage from arthritis visible on x-rays and MRIs, even though they have similar or worse symptoms than men with the disease. This and other factors combine to make diagnosis a long process.

It took several doctors and many visits, but I finally found a rheumatologist who would take the time to treat me while still figuring out what to diagnose me with. Too many were afraid to try something since they couldn’t slap a diagnosis on immediately, which left me in a lot of pain. Diagnosis of AS and related diseases takes a lot of time—an average of 8 years is often quoted, and it’s longer for women. Thoughtful treatment is very important in the meantime.

Treatments

For treatment, NSAID after NSAID after NSAID didn’t provide enough relief to make it worth taking, since they all caused serious acid reflux and digestive problems. Next we tried methotrexate, then injectable methotrexate, but the effects didn’t last long enough. Sulfasalazine helped for awhile, but higher doses made my white blood cell count drop, and it wasn’t helping my back.

(A lot of science: NSAID stands for non-steroidal anti-inflammatory drug. These drugs reduce inflammation and include names like ibuprofen, aspirin, and naproxen. Methotrexate is called a disease-modifying anti-rheumatic drug (DMARD), and it’s known to slow the progression of rheumatoid arthritis and other autoimmune diseases. Sulfasalazine is a drug known for its anti-inflammatory effects for inflammatory bowel disease and spondylitis.)

Finally, my symptoms were enough to make my doctor think about putting me on a type of drug called a biologic. I was really hesitant at first, because biologics are known for some scary side effects. I decided that I needed to be able to function, though, and I started Humira.

(More science: A biologic is a kind of drug that comes from a biologic source. For example, a drug like aspirin can be made by mixing chemicals together, but a drug like Humira has a much more complicated structure that can only be made from proteins. Humira and Enbrel, two common biologics for arthritis, work by inhibiting parts of the immune system that may be attacking joints. Because the immune system is inhibited, there is a greater risk for infections and cancer that are usually stopped by the immune system.)

Exercise has been really helpful for me to ease symptoms, especially roller skating in the summer and various other exercise in the winter. Exercise is not a cure-all for arthritis, though. (I’ve had people without medical experience arrogantly tell me that it is.) It’s really helpful for easing symptoms, but I have to do a lot of exercise to get benefits, and sometimes the exercise also hurts me. So, what makes my joints feel better, for example, might make my enthesitis worse. It’s a tricky balance, and once I sit down for awhile, I’ll start feeling stiff again even if I just exercised. Exercise works best in combination with good medication.

Getting enough sleep is also really important. I touched on it in my article about gaming with arthritis, but on days when I don’t get enough sleep, everything will start to hurt. Sometimes I can get away with it for one day, so it doesn’t seem like such a big deal, but if I ignore sleep a second day, I always regret it.

What about now?

Since going on Humira my symptoms have gotten a lot better. I also try to exercise regularly to keep them under control. I still have disease flares, though, and lately, my shoulder, tailbone, and hip have been acting up.

If I take care of my body, though, I can still do what’s most important for me. I just have to watch for warning signs that I’ve pushed myself too far, and also watch for signs of worsening symptoms so that I can get in to see my doctor and discuss what to do. When flares happen, though, I’m forced to slow down and prioritize what I need to get done, because just existing can start to feel exhausting.

In general, though, I’m in a much better place than I was a few years ago. The medical system can be slow, but I’ve gotten good results finally. I understand about my condition and I found a good doctor, so I feel optimistic about things and able to take on life, even if I have some bad days.

-Bri

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