My Journey to Getting Diagnosed
Last updated: September 2022
Where do I begin, as it feels for me my journey has been a long one. It has been what I like to call a big roller coaster. A big lonely roller coaster.
I would never imagine waking up one morning, and never feeling the same again. I never thought that it would be possible to happen to me. My symptoms started slowly. I believe, I have been suffering for a long time. I believe I have been suffering from a young age. But growing up, around people that saying my back hurts or feeling unwell, was just some sort of complain, instead of looking more into it.
When I was 8 years old, I was at a friend's house. I stepped outside on the balcony, without any rails, on the second floor, and her brother threw a football, to catch. I tried to grab it, and slipped from the balcony and fell down from the 2nd floor, landed on cement on my bum. The feelings I felt, falling in those few seconds, that fell like minutes of my life just ending. It was so scary, I still have flashes of that moment.
I lost my breath for a few seconds
I couldn't speak or say one word to call help. I just saw stars around me. It took me minutes to realize, what had happened. I am so thankful, until this day, I am lucky to be here. I remember going with some friends to the chapel, opening a candle, before that happened. What are the coincidences.
I never have felt the same. I have always had pain ever since, but thinking "oh it is growing pains" or just disregarding it. Ever since, I been dealing with fatigue, pain, depression, and anxiety. It all makes sense, when I look back. Every time I would plan with friends to go out or any sort of event, it would take me days to feel better. Having to miss school because I would always feel tired.
No matter how much rest I would get, it would just feel not enough
I would wake up unrested. It got worse as I got older. It started affecting my life in so many ways. It affected my social life, my life with family and friends, my life at work. I would wake up with all these emotions, not knowing anymore how to handle it.
One day, I remember being at work. All I had to do was cross the street and walk a block to go get coffee. I walked a few minutes, feeling my back and legs so stiff, like a tin man, rusted, not being able to move them or catch up to my co-worker. I felt so embarrassed to tell him I can't continue and had to return back.
I was seeing a therapist, in the mean time as my anxiety and depression was out of hand. I was put on different medications that were not helping and making me feel any better. I kept feeling worse. Tasks became harder to complete around the house like cooking and cleaning. I started calling sick more often at work, as I was always extremely tired, not able to stand, walk or sit long periods of time. I would sneak on my lunches and breaks to find a place to lay down or put my head down somewhere. I felt embarrassed and ashamed. I felt like there was something wrong with me.
I ended up going on sick leave
It wasn't my first time. This was going to be my third time, but my longest one. I pushed and pushed myself to my limits, where I was not able to go on anymore. I felt stuck. I felt defeated. I felt trapped with no way out.
I was seeing doctor after doctor, telling me it is just depression and anxiety, what I was feeling. Getting dismissed, while my symptoms where out of control. I had developed new symptoms from the medications I was put on. From severe weight gain, to increased pains, to nausea, and vertigo. You name it. I wasn't able to keep my head up. I ended up bed ridden. I always had to lay down to feel better and some sort of relief. I knew this way was not a way of living. I knew it was not normal. I pushed to get more answers. I knew the doctors around me were not helping me. I knew I had to do my own research and find someone that would listen.
Google helped me
I know you have heard don't read and listen to google. But for me, Google is what helped me find the right rheumatologist and get more answers. I was sent to my first rheumatologist who disregarded me in 5 minutes. In and out of his office I went. Discouraged with no answers, all to tell me it is not a rheumatology problem. No tests were even done.
I did not give up, even though I felt like it, in so many ways
I had no one around me that believed what I was going through. Everyone thought I was just making excuses to continue being on sick leave and no wanting to work. I Googled my symptoms and came across ankylosing spondylitis. I then searched for someone that would specialize specifically with AS. I was lucky as he also specialized in fibromyalgia. I emailed him right away, letting him know my journey and everything I was feeling. What was the worst that could happen? Get another dismissal? I was used to it already.
He emailed me back with my first appointment. My first visit, he sent me for tests to be done like blood tests and an MRI. This led to my diagnosis and getting answers. January 2019 was when I was diagnosed with AS and fibromyalgia. Let me tell you, it felt such a relief to finally know, it was not all in my head. But who knew, this was not over. This was just a finished chapter to another one starting.
Has changing your diet helped manage your pain and flares?