Kirria Johnson

Kirria lives in Victoria and has Restless Legs Syndrome (RLS).

I have been living with Restless Legs Syndrome(RLS) for nearly 15 years, a neurological condition that causes uncomfortable sensations in the legs, often described as crawling, tingling, burning, or electric-like jolts, accompanied by a strong urge to move. Over time, my symptoms have also extended to my arms, particularly in the evenings and at night, making it extremely difficult to fall asleep and stay asleep.

For many years, my symptoms were misunderstood and went undiagnosed. Several general practitioners were unable to help, often attributing my symptoms to muscular issues, general fatigue, or post-viral syndrome. It took over two years to finally receive a diagnosis, but even then, there was no cure, little understanding or scientific findings as to why RLS occurs, and very little support on how to manage the condition.

Living with RLS has often felt lonely. Explaining my symptoms to people who don’t understand, or answering questions like “How did you sleep last night?” has been isolating. Not knowing where to turn for support, or having someone with lived experience to talk to, made the journey even harder. 

Over the years, I have gone through a process of trial and error to find a sustainable balance in managing RLS, exploring lifestyle approaches such as diet, supplements, exercise, and daily routines. Through this journey, I have learned which strategies are most effective for me in supporting daily functioning, reducing discomfort, and maintaining a sense of control over the condition. These learnings are still ongoing.

While there is no cure, sharing my story helps raise awareness, supports others in recognising symptoms early, and highlights the need for advocacy and research into effective treatments. I hope that by sharing my journey, I can provide support, encouragement, and insight for others living with RLS so they don’t have to face it alone.

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