My story goes back quite a few years. Almost 27 years.
I don’t remember the first time I really felt any sort of pain but when I was around 7 years old, I developed a pain in my ankle. It was persistent and never went away. After many blood tests, X-rays and doctors visits I was finally diagnosed with Juvenile Rheumatoid Arthritis. Although the pain was generally only in one ankle and knee, I was told I was going to be wheelchair bound by the time I turned 16. Not a great start to life. Due to the JRA, I couldn’t compete in many sports, play with my friends or live a normal life. I had to take a handful of pills every day, the worst of course, Cortisone. Fast forward a few years and the pain and flares started to decrease. Entering high school, flares were down to maybe 1 a year, but I always had a persistent back and neck pain.
Going to the doctors was now second nature and the back and neck pain was never linked to any auto immune condition. Lots of visits to the physiotherapist to alleviate the pain. By the time I was 16, I had not had any flairs like the ones I had when I was younger. My GP told me that I was in remission. Fortunately, I was not in a wheel chair. And able to play sports.
Over the years, the back pain never disappeared, but I did start developing a blinding hip pain. Almost like sciatica, and a pain in my rib cage. A pain that would lead to many sleepless nights and lots of tears. In the back of my mind, I always knew it was somehow related to JRA but I was too scared to do anything about it. When the neck pain got bad, it was generally treated with a cortisone injection, physio and Chiro. That would put it at bay for a couple of weeks sometimes months. This was my normal.
Fast forward to Christmas 2012. I woke up on Christmas morning with a burning pain in my big toe. Initially I though I was bitten by a spider but the pain was intensifying and would not go away. Me, being me, I avoided visiting the doctor till the new year. After my first visit to the Dr, I was diagnosed with gout. I put on my Dr google hat and searched the internet for any cure for gout. I tried it all, but the pain never subsided. Back to the Dr. My Gp has treated me all my life. He knew my history with JRA and diagnosed me with Rheumatoid Arthritis. I was not happy with this diagnosis and went about to get a second opinion. We started again with gout as the blood tests didn’t show any rheumatoid factor. My uric acid levels were normal and still had the pain, pain that had started extending into my knee. I was diagnosed with Sero-negative Rheumatoid Arthritis.
With this diagnosis I thought my best bet for treatment was to see a rheumatologist. I managed to get a booking with Dr Benitha. We all know how getting a booking with a specialist takes a good couple of months and by the time my booking came around, I had developed inflammation in my right fingers and wrist and also developed plants fasciitis in both feet. I couldn’t walk for long periods of time, and I couldn’t even pick up a 2kg weight and hold it. This was a problem because I was a personal trainer and these symptoms were affecting my livelihood. Thankfully I had understanding clients.
At my first appointment, Dr B went over my extensive medical history, took the time to listen and at the end of the assessments, she said she is almost 100% sure I have Ankylosing Spondylitis. She ordered blood tests for the HLA-B27 gene, and X-rays on my back, neck and hips. HLA-B27 came back positive. The X-rays showed no fusing of my neck or back but my SI joints showed some fusing.
The nice thing about Dr B, is that she is very careful with her prescription of medication. She did not want to rush straight to biologicals, but rather start with methotrexate and NSAIDS. It took a couple of months to find the right dose and NSAID that worked. I was also put on Salazapyrin at a later stage.
As we know, medication is only one aspect of treatment and management of this condition. I have always had a background in sports and fitness. Before I was diagnosed, I enjoyed weightlifting. I always had some sort of pain after heavy weight sessions but I put that down to the training. After the diagnosis I changed my approach to training and started a new sport that I still do. That is rock climbing. I believe that climbing has helped me manage the effects of AS to a large degree. Not only has it helped with being stronger and more mobile, but it has also had a great effect on me mentally. AS has taken me to many dark places and the climbing helps take my mind off of it.
My journey has taken me many places, emotionally and physically. But, it is a part of my life that will never go away. I have accepted this and I will carry on. I don’t know what the future holds, but I am going to enjoy my life to the best I can.