Ankylosing Spondylitis

Several months ago, I was diagnosed with having Ankylosing Spondylitis. You might be asking, What the hell is that? Don't worry; I didn't know what it was before being diagnosed, either. Ankylosing Spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss), is a chronic, usually painful form of arthritis that particularly affects the spine. The sacroiliac joints (SI) in the pelvis are also affected in most people, and it often causes eventual fusion of the spine. Sometimes known as Bamboo Spine, this disease is commonly mistaken for other things, including Rheumatoid Arthritis. It is a disease that gets progressively worse as time goes on, if nothing is done to slow down the symptoms.

It all began in my right foot. It was constantly sore. Standing, laying down, walking – it was awful. It was determined by my doctor to be Plantar Fasciitis, which is a painful inflammatory condition of the foot, mainly affecting the heel or arch. Next, my left knee suddenly had a large lump on the side of it. It was sore to the touch, and hard as a rock. I thought it was maybe a calcium deposit, but my doctor determined it to be an inflamed tendon. He suggested icing it, and to take an anti-inflammatory, like Advil. Between my foot and my knee, I began taking high amounts of Advil every day to ease the pain, and reduce the swelling.

Not long after I began taking Advil, I began seeing new symptoms which Advil was doing nothing to help. I decided to see my doctor again. I was beginning to have pain in my hips and left butt cheek, my shoulder, my fingers, and worst of all – my back. There were several spots on my back that were tender, but it was particularly bad towards the bottom of my spine, around the SI joints. I was sent for several blood tests, but everything came back normal. We hit a wall.

I was in constant pain from the time I woke in the morning, to the time I went to bed at night. Work became increasingly difficult, and after a while – impossible. I was forced to quit my job, and began to search for something that was easier on my body. If you know anything about Alberta, you’ll know that a huge percentage of the jobs here are labour-intensive. Obviously unable to do these jobs, it became progressively trickier to find work. I applied for Employment Insurance Benefits, but without a diagnosis, I was turned away from receiving any sort of coverage. With no wage, no health benefits, and a steadily dropping level of hope, I became quite depressed. Often staying in bed until afternoon because of the pain, I stopped even bothering to look for work. I was unable to drive my vehicle because I could not afford to. I lost friends because I was unable to participate in activities with them because of my financial and physical state. My credit cards were maxed, I had personal loans that I was completely unable to pay back, and I was stressed. I couldn’t exercise. I couldn’t play with my band (I play the most physical instrument, drums). Simply put, life was not good and there was no hope on the horizon.

My doctor suggested I see a Rheumatologist. The new doctor had me try many different pain relief and anti-inflammatory medicines. Soon, I was taking both Tylenol 3, and Indomethacin, multiple times per day, to try to relieve the pain. It was to no avail. I continued to feel pain in my joints, and the medication made me ill.

Because my fingers were becoming quite inflamed and it was making my life more and more difficult, the Rheumatologist decided to try injecting cortisone into one of them. My right middle finger was becoming increasingly more painful, and often rendered useless for completely everyday tasks. It was impossible to bend, and constantly sore. He also injected cortisone into my heel, to try to relieve the symptoms of the Plantar Fasciitis. The injections worked temporarily. 3 months later, the symptoms returned, and I was back where I started.

Becoming increasingly agitated by my problems, I asked my Rheumatologist to dig deeper. He sat down with me, and we tried to focus on the bigger picture. He asked me questions about my health besides the problems with my tendons. Many of the things he asked seemed strange to me, but I knew that he was trying to narrow things down. He asked about the condition of my eyes, my diet, my nails, my bowel movements.

I remembered an issue I’d had with my eyes a year before. I had seen an Ophthalmologist when my eyes started to become red and painful, and extremely sensitive to light. I had used medicated drops and gels to relieve the symptoms, and after 8 weeks, I was back to normal. The Ophthalmologist suggested that I simply had levels of bacteria and proteins in my eye that were too high.

The Rheumatologist next suggested that I see a nutritionist. I was referred, and booked an appointment. I explained to the nutritionist what my typical diet was like. I am a vegetarian of seventeen years, and am quite careful about getting the proper nutrients at every meal. The nutritionist checked all of my blood work and ruled that I was in good condition. I am average weight for my height, my iron levels were great, my B12 also great. She sent me on my way with no news to report to my doctors.

I had another meeting with my Rheumatologist to discuss my symptoms. He considered the previous problem that I’d had with my eyes to be a symptom. Next, he explained to me that I had most of the symptoms for Ankylosing Spondylitis. He told me that the typical patient is young, aged 18-30. He also explained that men are affected more than women, by a ratio of 3:1. This still did not explain why I would be diagnosed with a disease that predominantly affects the spine, when I had so many other painful joints in my body. This was when he decided to send me for a corticosteroid injection in my SI joints.

Guided by an x-ray, a radiologist injected anaesthetic into the SI joint, to numb the area. Next, several drops of contrast dye were injected into the same area, to make sure that the medication was only injected in the joint. After that, a mixture of anaesthetic and corticosteroid were injected into the joint, very slowly. It was extremely painful, and uncomfortable. I had a strange feeling in my legs as well, almost like sharp growing pains. Twenty minutes after the procedure, I was allowed to simply leave and carry on with my day. I was reminded that the relief from the pain may be temporary, and may come back within 2 weeks.

The next day when I awoke, I was a new person. Easily getting out of bed, I had no pain in my back, foot, fingers, knees, hips – Nothing! I couldn’t believe it! Careful not to get over-excited or hopeful, I kept my fingers crossed for the next two weeks.

Two weeks later, the symptoms had not returned. Three weeks, the same. Four weeks, no change! I let myself rejoice. I booked an appointment with my Rheumatologist to speak to him about my progress. A week later, I was in his office, and he was as relieved as I was. He measured the things he usually would – how far I could bend over, how far I could turn my torso while sitting, etc. Improvement everywhere! With a handshake he bid me adieu, and suggested that I call him if anything changes. I left his office and I have not been back in 3 months.

I am now a new person. Able to exercise and work again, I am hopeful and optimistic. My symptoms may re-occur, but now I know there is something to relieve the pain when it is needed. Corticosteroid injections are not safe to continuously use, though. Over-use can lead to more complications, and should only be done when the pain is peaking, or when a doctor cautiously prescribes it. If left untreated though, the symptoms of Ankylosing Spondylitis could become progressively worse, and (as mentioned), cause fusion of the spine. I plan to do everything in my power to prevent my problems from getting worse. My disease will not conquer me!

[Any suggestions, comments, or conversation on this topic would be greatly appreciated. Thank you so much for reading!]