The Start of My Journey
Last updated: March 2022
Hi, as I am fairly new to the group I thought I would share my story as to when I got diagnosed with AS.
So here goes!
Diagnosed with ankylosing spondylitis
I was 15 years old and very active in gymnastics, dance, running, and the gym at school. I think to be honest looking back my symptoms started at a much younger age as I used to complain of hip pain a lot which was like sciatica pain. But after many visits to the doctors, they just brushed it off as growing pains. Which to me is quite laughable now seeing as I didn’t grow very quickly and I am now an adult woman just shy of 5ft.
Anyway, I was doing so much exercise at school, I think partly as a stress release “ not going to bore you all with my childhood “ but my parents were sadly going through a messy breakup and the exercise I was doing gave me a massive relief and kept myself busy and overall I felt happy.
Awful back pain
So, when I woke one day with awful back pain I thought I had pulled all the muscles in my back, it hurt to sneeze, cough and just any slight movement was agony. After a few weeks of being in this pain and taking NSAIDs every day my mum took me to see the local G.P who was unfortunately very unhelpful!
She seem to be more worried about my petite size which again is madness when my dear mum is only 4ft 10, my dad was under 6ft, and my older sister is 5ft 2. So, we are a small family and unless I was going in for Britain’s top model (lol which I wasn’t) being small wasn’t really a concern of mine.
She referred me to the hospital and luckily I saw a really lovely and helpful doctor who was straight away concerned about my back pain and by this point my massive, swollen knee too that I was hobbling around on.
Blood work and imaging scans
So he referred me to see the rheumatologist who again was very helpful and did my blood, X-rays and at some point arranged for my knee to be drained which I remember was a huge relief when I could walk more freely again.
The blood work showed that I was HLA-B27 positive and X-rays that I had inflammation around my spine. I was given NSAIDs, to begin with, and over the years I have gone through many more brands, steroid injections, and now on and off oral steroids which I love as they work wonders for me even on a very small dose. But I have been told that I can not take them forever so my new journey begins with trying a biologic.
I still try to stay fairly fit with Pilates, swimming, and eating a healthy balanced diet but the AS has become more troublesome with more flare-ups. I am praying the biologics will help and that I will have fewer flare-ups in the long.
You are not alone!
Thank you if you decide to read my story. I will continue reading others and I am so grateful I found this group where people can share their experiences.
Do you notice worsening flares in colder weather?