Ankylosing Spondylitis: My Journey
Welcome to Totally Chronic! My name is Steff, and I’m 22 years old. I’m starting this blog as both an outlet, and as a place for people with chronic illnesses (or not) to come together and relate. My goal in starting Totally Chronic is to just help one person feel better about their illness. Whenever I’m scrolling through Instagram or Facebook and I see that one post that says something I totally relate to, it makes me feel warm and not so alone in my journey. If I can do that for just one person, I’ll be happy.
All of that being said, I wanted to start this blog off by telling my arthritis story in its entirety (to date). So strap in, this one’s gonna be long.
On February 11th, 2017, I woke up with excruciating pain in my hips, along with a shooting pain going down my right leg. I didn’t think much of it, thinking I either hurt it during exercise or while I was sleeping, so I continued to go to work for 2 weeks with the pain only getting worse. At the time, I worked in a fast food restaurant, which made the pain and the stress much worse. Finally, my GM came to me and said that she could tell something was wrong, and urged me to go to the doctor. The following day, I went to the walk-in and saw the doctor that was in. He told me that he couldn’t see that there was anything wrong with me, and to take a couple of days off of work to rest. He assured me that nothing serious was going on and I should be fine after the few days. Little did we know, this would begin my year long journey of finding out what was truly wrong with me that day.
After those few days, the pain only got worse. I became bedridden and couldn’t walk on my own. I ended up having to quit my job, as my time was now focused on figuring out what was going on with me. We made an appointment to see my family doctor, but before that came, I took a trip to the ER because the pain was so bad. Lying in bed even gave me excruciating pain. I knew something was not right with my body, I just didn’t know what it could be. The visit to the ER did nothing, as the doctor suspected possible sciatica and sent me home with T3, which were of no help to me. I’m allergic to ibuprofen, so all NSAIDS are out of the question for me, just to my luck.
On March 4th, 2017, I had my family doctor appointment. She checked me out, moving my legs certain ways to see what hurt and what didn't. She asked me to take my shirt off and try to touch my toes. That’s when she noticed that my spine isn’t straight. She told me that this was called Scoliosis, and we figured I’ve had it my whole life, but no one ever noticed. She sent me for x-rays to get the angle of the curve, and told me to try out physiotherapy while we tried to figure out what was going on. The angle of my scoliosis is 9*.
After a few more doctors appointments and some muscle relaxers tried (they didn’t help), she finally referred me to a neurosurgeon, a rheumatologist, a neurologist, and sent me for an MRI of my back to see if it could be a pinched nerve or herniated disc. In the meantime, physiotherapy was slowly helping me get back on my feet, and walking was getting a bit easier. I was able to do at home exercises 3 times a day, as well as going for daily walks with my dad. I was beginning to discover that exercising helped calm the pain down.
After my MRI results came back, I had a follow up appointment to see if anything showed up. It wasn’t a pinched nerve like we thought it could be, but they did find that there are small cysts around the base of my spine. These are known as perineural cysts, or Tarlov cysts. Seeing as the neurosurgeons were declining to see me, my doctor told me that the cysts probably weren’t the cause of the pain. She told me that the rheumatologist was who I really needed to see for my chronic pain. The only problem being that this was May, and my rheumatologist appointment wasn’t until October.
Over the course of the summer, physio was helping more and more, and my doctor got me started on Cymbalta for depression and to see if it would help with the pain at all, and it did. It helped to calm down the flares, and make them more bearable when they did happen. I went from not being able to walk on my own, to being able to go out for a few hours with friends within a few months. Although being out always left me extremely fatigued, and would leave me in bed for a few days recovering, I was starting to feel like a human again.
Fast forward to October, when my rheumatologist appointment came. I was extremely nervous for this appointment. I’d been waiting for what felt like forever, and my biggest fear was that he would dismiss my pain just like the other doctors I saw (minus my family doctor).
I had the greatest surprise at that appointment. Someone finally believed me! He checked me out, asked me a lot of questions about family history, and my symptoms, and sent me immediately for further x-rays, blood work, and a special MRI. I left his office that day with a sense of hope, something I hadn’t felt in 8 months of this mystery chronic pain. I felt like things were starting to look up for me.
The bloodwork came back, and he had tested me for the antigen HLA B27. If it’s found in your blood, it can sometimes indicate the presence of an autoimmune disease. As it turns out, I was positive for it. The bloodwork also showed that I had a lot of inflammation in my body, which causes pain. The x-rays came back normal, indicating that there was no damage done to my SI (sacroiliac) joints. This was good news, but I still couldn’t believe that all of the tests were coming back with no real results.
My next appointment with my rheumatologist was in February. If I’m being honest, I wasn’t expecting much from this appointment. He had told me that if they found anything urgent, they would call me and schedule me sooner. I didn’t get a call, so I figured nothing came from the MRI again.
As I sat in the office waiting for him, I was extremely nervous, and not as optimistic as my last visit. When he finally came into the room, he came in with news he was ready to tell me. The MRI showed inflammation in my SI joints, and he diagnosed me with Ankylosing Spondylitis (AS).
Ankylosing Spondylitis is a type of inflammatory arthritis. It typically affects the spine, but mine is found in my hips, and the pain radiates down my legs during a flare up.
My rheumatologist talked to me about my options, letting me know that typically the first form of treatment would be NSAIDS. Since I’m allergic to ibuprofen, that wasn’t an option for me. He then told me about biologics. He told me that typically this drug is extremely expensive, seeing as I didn’t have insurance. Since I live in Ontario, the government covers the biologics until I turn 25, where I’ll have to find insurance elsewhere. He told me that this would be a good option for me to try. I agreed, and left the office that day with a lot of mixed emotions. I finally had answers!! But I was now officially “sick”. Something that took a few months to fully soak in, but I now embrace it, and am fully proud of my body.
I started my infusions (biologic) on April 4th, 2018. The drug I’m currently on is called Inflectra, and I’m getting infusions of it every 8 weeks. I’ve now been on Inflectra for 7 months. For a while, it was really calming down my flares, making my pain easier to deal with, and helping me get back to functioning like a human. Around the 6 month mark, which I hit in October, my flares started up again quite regularly, granted, not as bad as previously, but more than I had become used to. I see my rheumatologist again in December, so I’ll be sure to make an update post once that appointment happens.
I’m currently on Effexor, Pregabalin (Lyrica), and Latuda for the pain, depression, and anxiety. I’m still working with my doctors to find the right “cocktail”, which is both frustrating and exhausting, as I’m sure a lot of you know. I see my family doctor on a monthly basis, and am now seeing a psychiatrist at CAMH in Toronto monthly as well. I’m still unable to work, as all of my time and energy is dedicated to bettering myself and learning more about how my body deals with everything going on in my life.
That basically brings us to today, my primary goal currently is helping my mind and body heal, and working all in unison so I can go through my day to day with peace and ease. Along with this blog, of course, which I’m so excited to start and share with everyone! Thank you for reading my long story, I appreciate it so much, and can’t wait to post more!