Nicole has juvenile idiopathic arthritis

As told to: Annika Lund, first published in Swedish in the magazine Medicinsk Vetenskap no 3/2021.

“I was diagnosed with juvenile idiopathic arthritis when I was twelve, but I became ill when I was six years old. For several years, I mostly had a fever but no joint pain.  

I have most issues with my lumbar spine. It’s a dull ache which is particularly strong in my lumbar spine. When it’s at its worst, it’s at a seven or eight on the VAS scale. Then it’s so painful that I feel sick and am bedridden. When I have to get up, it feels like I’ll be sick. The nausea is just as distressing as the pain.  

A few years ago, I had a relapse of extreme pain for nearly two months. It was debilitating, in the end I started to doubt myself – am I really in this much pain? Or am I imagining it? You’re not yourself when you’re in that much pain.  

My worst pain comes in relapses, and I can’t do much about it. The pain from relapses can only be eased by morphine or cortisone injections, but the needles are so unpleasant that I avoid them.   

I’m also in pain between relapses; I’m always in pain. I exercise to prevent this daily pain. Any exercise works for me. I even play padel, but I need to be careful about that because it’s demanding on my back. I also go to the gym – preferably high-intensity training – I like to sweat. If I’m in more pain, I take it easy, maybe do some yoga. 

I also exercise for pain relief. If I’m only in a bit of pain, a walk can relieve it, but as soon as I stop it hurts again. The same applies to hot baths or TENS – it’s only during that the pain is eased. 

I hope to become pain-free in the future. New medications are constantly being developed for rheumatism. Maybe one will be perfect for me – I hope so.”