The problem is not in my head.
Hi there, fellow AxSpa warriors! My name is Lenka, I’m 29 and I’m a girl from Slovakia. I have a story to tell. Brace yourself, grab a popcorn and a heating pad because it’ s going to be a long one.
My story began a year ago, when the world shut and we had to stay at home. I am a teacher so my daily life changed drastically from one day to another. I was used to running around the school, leading quite an active life and suddenly, I was forced to spend the majority of my work time sitting on a chair in front of my computer. To be honest, I have always experienced some kind of pain because I suffer from the hyper-mobility syndrome so I went through multiple surgeries in the past.
One diagnosis provided but the support harsh
To be fair, I enjoyed the long-distance teaching quite a lot because I could just sip my coffee while teaching and didn’t need to rush anywhere. However, I quickly changed my mind when my back started to hurt. At first, I wasn’t really able to locate the pain so I thought that maybe the chair was too cold and my kidneys decided to shout at me. I went to visit my doc and she sent me to a CT scan of lower abdomen area which showed that my kidneys were just fine and my problem was not that far away from where I located it originally. They found out that I have severe sacroiliitis – inflammation of joints on my lower spine on both sides. I didn’t know where to go and one of my acquaintances advised me to visit this super skilled neurologist in a town nearby. They told me how amazing he was and if there was anyone who could help me, it would be him. So I went there, convinced that my pain won’t torture me any longer.
The doctor was horrible. He rejected all the tests I had done, from blood-work, CT and MR scans to opinions of all the doctors I visited. He didn’t even examine me, told me to lie down and he injected a painkiller into my back, without explaining anything or asking about my allergies. When the torture was done, he told me that I was healthy, the only problem I had was in my brain and if I fixed my head, I would be okay. I was so messed up after the visit that I really did believe him and went several months in pain without trying to solve the problem convincing myself that there is nothing wrong with me.
Clear answers only after enduring great pain
It wasn’t until August 2020 when I couldn’t walk anymore because I was in so much pain. My parents had to rush me to emergency where I met a young doctor who gave me IV painkillers, relaxants and some anti-inflammatory stuff. In about five minutes, I fell asleep because the pain was slowly fading. She told me to come a few times during the week for more IVs so I did. I felt better for a month or so, then had to go through another visit with the neurologist from hell because the pain started to be debilitating. He realised that oops she really is in pain, I should sent her to get an MRI scan. So I went for the scan and it revealed that it indeed was sacroiliitis, that now developed into a severe problem that even caused swelling of joints which was pushing on my spine. I barely could walk so he sent me to a rheumatologist which, looking back, was a gift from God because I finally was diagnosed properly and was given proper medication. I have axial spondyloarthritis, with psoriasis on some of the joints. Who would have thought, huh?
Recently ill and recovering
I was on Metothrexate and now have to inject myself with Cimzia. I swear I was getting to the point where I thought I was feeling better but then I tested positive for Covid-19 and had to stop injecting myself. It got so bad that I had to be hospitalised in the National Institute of Rheumatology for two weeks because I wasn’t able to function properly. They gave me IVs with prednisone, painkillers and some other anti-inflammatories. I also underwent an intensive training with a physiotherapist to get me walking properly again and let me tell you, the lady was a miracle.
Recently home, recovering, and nordic walking
In less then one week I was walking almost normally and able to practice at least a light yoga again. What is more, she introduced me to nordic walking, which is amazing, I try to practice it every day in our local park. I still can’t do super long distances but hey, baby steps, right? I still can’t say I’m getting better or my pain is less intensive. However, I am thankful for my stay at the Institute because they showed me how to fight it and how to ease the pain. For that, I will be eternally grateful.
This all happened only recently, I came back home last Friday. Today, I used the last injection from the first round of the treatment. I will go back for check-ups at the end of March and the doctor said that there is probably a change of the biologics and more injections coming my way. However, I am prepared to fight and be patient.
Thank you, doc, for listening to me, for helping me, for shouting at me when I gained weight after Christmas… I know your intentions are good and you want to help me.
Thank you, dear physiotherapist, for making me mobile again, for your wise advice, for believing in me, you make a wonderful friend.
Thank you, all the new friends I made at the Institute, who know exactly how I feel so when I say “ouch” and “oh” multiple times a day, I don’t have to explain myself.
Thanks to you, dear reader, you probably know exactly what am going through because chances are you experience it yourself.
Remember to use your meds, stay positive and try to find good things even in the weirdest situations. Like me yesterday, I realised that I love my body so much that even my immune system gets so jealous it starts attacking itself
Does reading AxSpA patient stories help you in your journey?