114 Kilometres in 5 Days: Walking the El Camino de Santiago to Raise Awareness of CRPS

“If I was going to raise money for anything, it was going to be Burning Nights.”

Pain therapist and educator Laura Rathbone undertook a staggering 114 kilometre walk through the winding foothills of El Camino de Santiago in Spain across the span of five days. Her mission? To raise vital funds for Burning Nights CRPS Support. With each step, Laura walked in honour of those who face unimaginable pain every day, raising £653.41 in funds and building visibility, awareness, and support for this little-known but devastating condition.

“As a clinician, CRPS is one of the most debilitating conditions we know… I wanted to use my platform to showcase what Burning Nights is doing to build community and awareness for CRPS.”

A qualified pain physiotherapist and manual therapist, Laura went into practice with a deep sympathy for those afflicted by pain conditions: her own mother suffers from chronic back pain. As Laura started moving into treating complex pain conditions, she encountered more and more patients with Complex Regional Pain Syndrome (CRPS) and witnessed firsthand the significant challenges faced by those impacted by this life-altering condition. 

Laura now has a specialism in treating CRPS and has set up a dedicated clinic in the Netherlands, receiving referrals specially for the condition. Inspired by the courage and resilience of the CRPS warriors she has treated over the years, Laura decided to fundraise for Burning Nights CRPS Support.

“As a clinician, CRPS is one of the most debilitating conditions we know, but it’s not well known and patients are often not believed,” explains Laura. “It’s important that we use as many platforms we have to spread awareness about the condition. And I wanted to use my platform to showcase what Burning Nights are doing to build community and awareness for CRPS.”

“With Burning Nights, you have an organisation that’s patient-led, comes from patient experience, and provides a real sense of community.”

Laura first came across Burning Nights CRPS Support when she was treating CRPS patients in the pain management department at St Thomas Hospital in London. She wanted to refer them to resources that would provide them with solid informational and emotional support, and  found this in Burning Nights.

“With Burning Nights, you have an organisation that’s patient-led, comes from patient experience, and provides a real sense of community,” explains Laura. “I recommend that patients in my clinics go to the Burning Nights website and explore its support services so that they don’t feel alone.”

Laura has been particularly impressed by the online peer sessions and virtual befriending service offered by Burning Nights, especially those offered to younger people.  

“Young people impacted by CRPS need a lot of community support, but haven’t lived a life long enough to have established networks,” Laura notes. “If you’re a 16 or 17 year old with CRPS and you meet a peer of the same age with CRPS, it means so much. It’s brilliant that you’re connecting people with the condition to each other, and some of my patients have gone to these groups.”

Laura also appreciates the supportiveness of the Burning Nights website.

“I love it when patients go to the website and ask me questions,” observes Laura. “As a clinician, it really helps me with supporting patients and turning them away from desperation around medication limitations and unhelpful approaches. There are other ways of managing this condition and helping patients know there are other people living well with it is a helpful therapeutic resource.”

This led Laura to decide to fundraise for Burning Nights. 

“If I was going to raise money for anything, it was going to be Burning Nights,” shares Laura. 

“As a therapist I have a relationship with walking that is really meaningful, professionally and personally.”

As her fundraiser, Laura decided to do the final part of the El Camino de Santiago walk, an arduous five-day trek spanning 114 kilometres. 

Many of Laura’s patients are impacted by lower limb CRPS, and seeing the immense challenges they face, as well as the truly impressive courage they show, has deeply moved and inspired Laura.

“We find that walking is one of the things people with CRPS are desperate to hold onto. And it’s possible for many people, if not all, to walk with CRPS, but you have to accept symptoms,” Laura acknowledges. “It’s a choice, it’s hard and it’s a challenge. Sometimes it’s not possible and people need to come to terms with their grief about walking. But when you see someone struggle and achieve it, it is so inspiring.”

Recognising the challenging journeys that many of her patients must undergo, Laura wanted to honour their bravery, pain, and resilience.

“I wanted to mark how much I respect and acknowledge what is being lost and what is being grieved for, and also honour patients who wanted to work towards walking again,” explains Laura. “That’s why I wanted to do this through the El Camino walk. It would be a significantly painful, tiring thing to go through, and I wanted to do something that would push me well beyond my physical comfort zone.”

“I was wearing the Burning Nights CRPS Support t-shirt all the time. It turned out to be a great way of spreading awareness.”

During Laura’s five-day trek on the final part of the El Camino, she walked an average of 20-35 kilometres per day, carrying a heavy backpack of 8kg throughout.

It was a gruelling, painful journey—but Laura also found inspiration and hope in the strong sense of community on the El Camino trail.

“With around 4000 pilgrims arriving at any one time, you’re never alone, whether you’re religious or non-religious,” says Laura. “Your feet are screaming because they’re full of blisters, but there are others around you and encouraging you. You check on others and others check on you, it connects you as a human in the community.”

Indeed, some of the people who donated to Laura’s fundraiser were other walkers on the El Camino.

“I was wearing the Burning Nights CRPS Support t-shirt all the time,” shares Laura. “It turned out to be a great way of spreading awareness. I’m so pleased I was able to share knowledge about CRPS with some of my fellow walkers.”

“You pick up a stone, you carry it, and when you’re ready to let go of the burden, you put it on the next milestone—because it’s not serving you to get to the next space and you’re letting it go.”

Laura also shared a deeply thought-provoking El Camino tradition that she came across.

“When you’re walking the El Camino, everything in your heavy backpack has to be functional and in service to the walk,” recollects Laura. “But every couple of kilometres on the El Camino, you’ll see pebbles or rocks on top of the milestones. And with this tradition, you pick up a stone, you carry it, and when you’re ready to let go of the burden, you put it on the next milestone—because it’s not serving you to get to the next space and you’re letting it go.”

Laura found this to be a meaningful parallel with the acceptance and commitment therapy process– and a deeply poignant reflection of the experiences shared by many of her patients.

“CRPS is such a deep injustice,” Laura observes. “It’s often acquired out of nowhere, and people can, very understandably, be trapped in a cycle of disbelief, loss and lack of trust in themselves and in others. As therapists, we want to help people rebuild that trust.”

For Laura, an important part of her work is helping her patients understand not only what they have been through with CRPS, but how they are going to move on with their lives after diagnosis.

In some cases, this involves visualising how they can still achieve their goals but how they need to do them differently. 

In others, it’s about letting go of old expectations that no longer serve them.

“People want to help. Give them an opportunity to help, and show how generous and caring people can be.”

Laura was deeply touched by the warm-heartedness, support, and generosity of the others around her while she was walking the El Camino. 

“People do care,” she shares. “People want to help, sometimes they don’t know how. Give them an opportunity to help, and show how generous and caring people can be.” 

Laura feels that valuable parallels can be drawn to the importance of community for CRPS patients, and the work that Burning Nights does here.

“Burning Nights provides lived experience, reliable information and the reassurance to CRPS patients that they’re not alone—and this is life saving for some people,” Laura notes. “CRPS comes with so much distress, but with the right community, up-to-date information and support to achieve acceptance, you can live a rich and meaningful life.”

Burning Nights CRPS Support would like to thank Laura and her supporters for their generosity and kindness in raising vital funds to help us to continue our work. 

If you are interested in exploring Laura’s work and approach, please go to https://www.laurarathbone.com/ and follow her on Instagram @laura.painspecialist and LinkedIn 

 If you or someone you know would like to make a huge difference to the lives of those impacted by CRPS by raising funds and awareness, check out our fundraising ideas page.