“But you’re too young to have back problems.”
A familiar refrain I heard over and over again, from relatives, co-workers, even doctors. It’s true, I was only 19, but the constant pain I experienced was hardly kids’ stuff. And it would be another 10 years before I received a true diagnosis.
It wasn’t until after several sleepless nights, countless visits with various specialists, and so many X-rays I could practically run the machine myself that I found out I was suffering from ankylosing spondylitis – an autoimmune disease and type of inflammatory arthritis that affects between 150,000 and 300,000 Canadians.
My story is not unique. The average patient with an autoimmune disease sees five or six doctors before they are finally diagnosed. And nearly half are labelled hypochondriacs in the early stages of their illness, according to the American Autoimmune Related Diseases Association.
I figured out early on in my journey that if I was going to get any answers, I would need to do the legwork myself. Being a passive patient was not going to get me very far.
The misery of misdiagnosis
When I first noticed the sharp pain in my lower back and hips, I thought I had just pulled a muscle. The pain went away after a couple of days – only to return a few weeks later. My doctor still shrugged it off. I was too “healthy” for anything to be seriously wrong. The morning I couldn’t pull myself up off the toilet because my entire lower half was suddenly frozen in agony, I had to respectfully disagree.
From that point on, my life centred around pain. I would be walking across a room and suddenly get stuck, unable to put one foot in front of the other for fear of the excruciating shooting pain I knew was coming. I remember riding on the city bus, staring wistfully out the window at people running and wondering if I would ever know that feeling again. At cottages and amusement parks I pretended I was totally fine ‘just sitting this one out.’ (Wakeboarding isn’t really that much fun, is it?)
Eventually at one of my many Groundhog Day appointments, my doctor concluded I had sciatica. A pinched nerve was the cause of my misery. Later, a CT scan showed a herniated disc and my doctor seemed satisfied enough.
I accepted my diagnosis and began looking for solutions. I tried chiropractic, massage, acupuncture, broke down and reluctantly took painkillers, briefly considered dark magic. Nothing worked. I was trapped in a revolving door of debilitating pain with only brief intermissions of relief.
This pattern of flare-ups and remissions continued for several more years. I also developed what my doctor dubbed ‘chest wall pain’ (costochondritis), a tenderness and pressure in my ribs and collarbone area that made me terrified of hugs and sneezing. I tried decompression therapy and started seeing an osteopath. Still no improvement. I wore my back problems like a label, it was my new normal.
In the fall of 2014 I finally got an answer to the question I had almost given up asking when I ended up in the ER one morning with a severe migraine. My chest wall happened to be inflamed at that time, and even though I explained it was a chronic issue I was already dealing with, I was sent for an X-ray anyway.
A few days later I got a voicemail from the doctor who had treated me at the hospital. She had noticed something on my X-ray that may explain the chest pains and she wanted me to get tested for a genetic marker, a protein called HLA-B27. It was the first time I heard the words ankylosing spondylitis. I replayed the message four times trying to decipher what she was saying.
It was soon confirmed that I did carry the gene – 90 per cent of people with AS do – and my diagnosis became official. However, not everyone with the gene develops the disease, and not everyone with the disease has the gene. There is no definite cause of AS; although many researchers believe a triggering environmental factor (like a bacterial infection), may increase the risk factor.
In addition to no known cause, there is no known cure. In an autoimmune disorder, the immune system attacks the body – in the case of AS, the spine is the target. Usually starting in the sacroiliac joints (check) during late adolescence (check), the inflammation can spread to other areas of the spine and body, like the chest (check). As it spreads, new bone forms as a way to repair the damage and the spine begins to fuse together in a fixed position (um, check…?). This fusion process can ultimately lead to a permanently stooped posture, known as kyphosis.
As scary as the prognosis sounded, I was relieved to at least be able to put a name and explanation to my condition. My next question was, now what?
To drug or not to drug
Turns out my disenchantment with doctors was only just beginning. My family physician proudly informed me I was his first patient with the disease, which didn’t exactly inspire confidence. He referred me to a rheumatologist who immediately prescribed the NSAID Celebrex, and then proceeded to yell at me when I was hesitant to take it.
I became frustrated all over again. I had waited years to get answers and now instead of receiving any sort of an explanation, I was simply handed a prescription and told to carry on my merry way.
The specialist also recommended I start biologics medication. Biologics are antibodies engineered from living organisms, designed to suppress the immune system and slow inflammation. Again, I was hesitant. A suppressed immune system means a hindered ability to fight infections. Reported side effects have included tuberculosis, cancer, hepatitis B and heart failure. I wasn’t convinced it was a fair trade-off.
Then there’s the monetary cost: $1,600 a month. That’s for one shot of Simponi, a TNF-inhibitor, common class of biologics and one of the most expensive drug classes in Canada. There are some financial assistance options available and certain extended benefit programs may cover a portion of the cost, but most plans still leave a few hundred dollars to pay out of pocket each month.
Finding a way around AS
The thought of being on heavy medication indefinitely didn’t appeal to me anyway, so I sought out a more holistic approach.
I began seeing a naturopathic doctor and my diet was the first thing we looked at. Inflammation and autoimmune conditions are often reactive to certain foods, which can lead to a flare-up. I discovered I had a Candida overgrowth and started taking probiotics and antifungals, in addition to following a tortuous elimination diet. During this time I also began a daily yoga practice to help keep my spine and joints flexible.
After three weeks of eating like a rabbit and avoiding social functions, I relaxed a little on the diet. I still ate pretty ‘clean’, but I won’t pretend I bravely gave up every food I ever loved; I still indulge occasionally. I also added vitamin D, magnesium and fish oil to my supplement regimen and tried to stay as active as I could.
I went months without a flare-up. Yes, there were still bad days, but nowhere near the level of pain and immobility I was used to experiencing. I had taken charge of my health and was now practically symptom-free for the first time in more than a decade. I continued to research everything I could about my condition and ways to keep it under control.
I recently learned about a link between AS and the bacteria Klebsiella pnuemonae. UK-based rheumatologist Dr. Alan Ebringer found the bacteria may mimic the HLA-B27 gene, meaning a Klebsiella infection can trigger the immune system to mistakenly attack the HLA-B27 molecule. This bacteria can be subdued by a low starch diet and antifungals – much like the approach to eradicating Candida – which may explain why my elimination diet worked so well.
Yet even with all my success taking the natural route, my rheumatologist still insisted I begin the biologics treatment, inciting the fear of permanent spinal deformity in me. I finally conceded and began what turned out to be quite the rigorous process.
It took an entire team to set up my treatment. I had a medical coordinator help me figure out my coverage and financing, a pharmacy that delivered the medication (in a cooler I was sure contained an organ for transplant when it arrived on my doorstep), and a nurse who came to my house each month to administer the needle. While I am grateful to live in a country where medical services such as this are available, it all seemed so dramatic compared to my probiotics and downward dog approach.
In a twist of fate I found out I was expecting after only my second dose. Naturally, I stopped the treatment right away. In fact, I was relieved to have a reason to discontinue the medication.
For the past eight months I’ve been managing my symptoms the best I can, in ways that I feel comfortable with and that work for my body. Pregnancy takes a toll on even the healthiest of women, but as I watch my body transform to accommodate the little life flourishing inside, I’m inspired by just how adaptable it is. It’s made me more determined than ever to be proactive about my health and figure out what exactly my body needs to heal. Living with a chronic condition doesn’t make me incapable.
After all, I’m too young to have back pain.
Do you have an autoimmune disease? How long until you were diagnosed? What has your treatment been like? Tell us your story! Leave a comment below.