When I was a teenager, my knees, fingers, toes and feet started being extremely sore and swollen. I wouldn’t be able to hold my pens at school and my friend said I was walking “like a granny.” I was told-after numerous tests-that I had Juvenile Rheumatoid Arthritis. For years, I accepted that. All they did was give me an anti inflammatory gel to rub on my joints. I was resigned to the pain and stiffness. I wasn’t able to curl my hands to hold a cup, the iron… I couldn’t bend my fingers to write.
But for the past two years, that has not happened in the same way, or to the same extent as it used to.
On the other hand, my lower back pain increased dramatically. It was in my early 20’s that I noticed that I wasn’t as ‘well’ as others my age and younger. I worked in a warehouse and my feet, legs and sacral area were sore while others were still strong. I quit that job and found a caregiving job. That too strained my back but I didn’t pay much attention to it till 2011.
I remember the day vividly. I was sitting on a stationary bike and this awful pain shot through what I thought was my coccyx. And it didn’t let up. I’ve had X-rays, MRIs and all I’ve been told is that it’s mechanical, it’s because my hips aren’t swaying enough when I’m walking, and because I put my daughter on my hip. I’ve seen doctors, chiropractors and physiotherapists. No can do. I stopped looking for answers.
Till last year. I was waking up in excruciating pain, begging God to kill me. And so, one last time, I tried to figure out why I was in so much pain. I went to a pain clinic and the GP there sent me for a bone scan. And there it was. Multiple sites of arthritis. She told me I had osteoarthritis, “ordinary wear and tear” and suggested I get facet block injections into my spine and SI joint. After that, a rhizotomy. (Basically killing the nerve so doesn’t feel pain.)
But there was also enthesopathy (inflammation where the ligaments or tendons join my bone) in my lower limbs. What about that? And if the pain and cause were “ordinary,” how come none of my fellow 42 year olds had struggled with intense pain?
I ended up seeing a different doctor. After all, the treatments weren’t guaranteed to get rid of the pain, I didn’t trust the way the enthesopathy (enthesitis) was ignored, and they hadn’t given me a time the day before the procedure was meant to take place in theatre. How was I to get my ‘driver’ ready and available if they didn’t know when they’d need to take me home? Not fair!
Long story short, I ended up seeing a male rheumatologist. He is not my cup of tea! Very uncommunicative. Sent me for blood tests without telling me what he was testing for. He did tell me my mobility was not good! But he gave me a prescription but didn’t tell me what the medication was that he prescribed! I asked him and all he said was, “Painkillers. Don’t worry, there are no anti inflammatories. I know you can’t have those.”
When I got to the pharmacy, it turned out he’s prescribed Omeprazole to protect my messed up stomach lining, Prednisone for three months, and Sulfasalazine for the foreseeable future. I’d never heard of the latter in all my life! And I didn’t know what he was using it for. Four tablets of it per day a day and no explanation! He tests my urine but doesn’t say why either.
I tried two highly rated rheumatologists. One doesn’t even have a date that I can book an appointment for, and the other set me up for next year May!!
An email from the axial Spondyloarthritis association of our country said that we are short of rheumatologists. I can believe that! And most, just like overseas ones, are old. What will we do when the dinosaur rheumatologists retire?
From that first meeting, I also left with a form for an MRI. At my next appointment, he didn’t tell me my results, I had to ask him, though by the time I saw him, I’d already seen the results on my medical aid scheme (health insurance type company) app!
And that is how I was diagnosed with AS.
They said I should write a book 