*My CRPS Journey & Why I’m Walking/Jogging the Hastings Half Marathon 2026*

Living with a rare chronic condition like Complex Regional Pain Syndrome (CRPS) can turn your world upside down — and from personal experience, it certainly did for me.

CRPS is one of the most painful conditions you can experience and on the McGill pain scale it marks 42 out of 50. CRPS is also referred as the “suicide disease” due to the massive amount of pain it causes.

My name is Lucy, and I was diagnosed with CRPS at just 13 years old. Since then, it has affected every part of my life and continues to do so today.

CRPS is an invisible condition, which means that although I live with pain every single day — sometimes manageable, sometimes overwhelming — most people can’t see it. This has been one of the hardest challenges. When others can’t see your pain, they often struggle to believe it. Throughout my time in education, I was bullied and accused of “faking” my condition. Even some teachers questioned whether what I was experiencing was real.

Shockingly, the lack of awareness doesn’t stop at schools. Throughout the years, I’ve had to hand out leaflets and educational materials to doctors and medical professionals, explaining my own condition so they knew how to treat me. Still, many suggested it was “all in my head.”

CRPS remains misunderstood and underrepresented — and that’s exactly why I’m taking on a huge challenge.

*In 2026, I will be Walking the Hastings Half Marathon*.

This is something I never imagined possible. At the peak of my CRPS, I was taking more than 30 tablets a day to manage my pain and relied on crutches and a wheelchair when out and about.

My pain levels have never changed — and they likely never will. I’ve simply learned better ways to manage the condition day-to-day. But CRPS is unpredictable, and I don’t know what the future will look like. So I’m doing this now, while I can, to raise money for a charity that means so much to me: Burning Nights, an organisation dedicated to supporting those with CRPS and raising the awareness that is so desperately needed.

*Your support means everything.*

By donating, you’re not just supporting me — you’re helping bring recognition, understanding, and hope to thousands of people living with CRPS.

Thank you so much for reading and for any support you can give 🧡

Burning Nights CRPS Support is an independent UK charity dedicated to not only raising awareness for this debilitating & life-changing condition but to also support anyone who’s lives have been affected by it.

We are here to support CRPS patients & their families, friends & carers with our frontline services.

Raising awareness of CRPS is crucial to get patients diagnosed quicker & treatment started sooner, to give a better prognosis.