Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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As you all know Burning Nights like to share with you CRPS journeys from fellow CRPS sufferers and their families or carers.


This time our journey is from HOLLY BILLINGHURST. Holly’s story has been taken from her own blog site which she kindly gave us permission to reproduce some of it here.


Holly not only has CRPS, but she also has POTS, EDS, degenerated discs in her back and more. So this is Holly’s CRPS story as told on her blog “The Hippy Geek”


Holly's CRPS Story

Holly’s CRPS Story


This all started after I recently (2013) had a bit of a health ‘blip’. By blip I mean riding in an ambulance with massive breathing difficulties, chest pain and a virus that caused medical type people to notice that I had high blood pressure, general tachycardia, raised blood glucose and an immune system that had been beaten to a pulp by a mixture of stress and me ignoring my physical and emotional well being over being good at my job.

So, I realized that I’d rather not die at 33 and have started making small but significant changes to my life which are bringing me closer to being healthier and as a by-product, a bit of a hippy.

This is my experiment to see if I can continue as a nerd and a mother whilst becoming a bit more of a hippy. If that brings more peace to my life then all the better, although I think my husband may have something to say about the free love bit!

Since (and before) then, I have been diagnosed with a number of things until a GP joined the dots in 2015 and identified Ehlers Danlos which takes all the little individual pieces and makes up on gigantic genetic puzzle. Much of my blogging now revolves around my ranting about various dislocations, trying to get up & down stairs on my bum, and a love/hate relationship with the medical profession.

….. you might want to get a cup of tea.



Carry on reading about Holly’s CRPS story at her next Pain Management appointment on her blog site “The Hippy Geek”.

Holly’s blog site – The Hippy Geek

Holly’s Twitter – @WorthingWeb 



Thank you so much Holly for sending us your journey with not only CRPS but also EDS and POTS, and sharing your fabulous blog site as well. Please share Holly’s CRPS story using the social media buttons below the blog!


Share your story


If you would like to share your CRPS story either as a sufferer or as a family member or carer, then please get in touch and let us know! Will you be the next CRPS journey we share??!!



Written: 20/04/2016

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About the Author
As the Founder of Burning Nights CRPS Support, I want to help all those affected by this devastating condition which includes those living with CRPS, their relatives, partners, carers and friends. I'm also barrister, advocate & have lived with Complex Regional Pain Syndrome (CRPS) since 2003. I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!
  1. Phyllis Maria

    I would like to share my journey of how my life changed since my surgery in 2008, leaving me with CRPS & later being diagnosed with Fibromyalgia & PTSD.

    • Victoria Abbott-Fleming

      Hi Phyllis
      If you would like to share your CRPS journey please email us your story up to a maximum of 1000-1250 words and a couple of photos if you’d like?
      Please visit our contact page for all our contact details.
      Best Wishes,
      Victoria and team

  2. Irebeb

    Well I have just been reading this story from Holly and wow how one person can cope with all this is truly amazing. All CRPS story’s paint the same picture. They are all truly amazing human beings. Well done Holly for sharing your story with Burning Nights thoroughly enjoyed reading this. All the very best for the future.

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