Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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A Personal CRPS Journey

2020-03-15

A Personal CRPS Pain Journey

We share your personal CRPS pain journeys in our blog and on our Instagram feed to help show you that you’re not alone in this

Our first CRPS story was by Chuck, however we have now received another CRPS story by a lovely and intelligent lady called Emma.

Thank you Emma for sharing what is a hard story to read as her CRPS started when she was only 12 years old she had to have a month off school to begin with, then returned.

Thankfully her first secondary school had a lift so it was easy to get about, but sadly the second one didn’t so life got a lot harder when she had to use my crutches.. She managed to do well in her GCSE’s but college got a bit iffy because of the second injury, yet she managed.

Here is her CRPS story:

“A Quite Imperfect Fairy-tale.

Once upon a time, in April 2005, an awkward, bumbling and clumsy 12 year old girl, far from being a darling princess, was struck down with a cruel mystery illness of the foot. There were no curses upon her, no evil spells, no magic potions and no scary witch-like step-mothers to bring unwell against her.

This illness made her skin burn, the colour change from a splendid regal purple to a raging beetroot red, electrical sparks ignite beneath her skin and it swell like a balloon that would never burst! The illness mystified the doctors of the kingdom, they poked and prodded with all the tools to hand but still too no avail. The young girl was left to suffer in a never-ending state of torment until a answer could be found.

Over 12 months passed before the mystery was solved! Finally, magician like doctors worked tirelessly to solve her problems, and unveiled her trouble to be a little known disease called CRPS (Complex Regional Pain Syndrome). The young girl found this disease familiar to the one she had read in a recent newspaper cut out, except the article called it RSD (Reflex Sympathetic Dystrophy), unbeknownst to her she had held the key to her fate in that cut out.

The doctors tried their best to bring a ceasefire to the pain but with no luck. A week’s long stay in an Orthopaedic hospital for intensive physiotherapy, a plethora of simple medications and numerous bouts of physiotherapy later and her problem still was not made better.

As the awkward, bumbling and clumsy girl grew into a young woman her CRPS by some magic only affected her in bouts then would settle into remission, but things were all to change for the young spinster.
As time grew on, the CRPS rebelled against remission and spread into her right knee and the left foot following another clumbersome fall in November 2010. Sadly, it was not until 2011, when in the grips of a flare up, until the ‘Pain Clinic’ were called in to her rescue.

The years grew on, as did the many treatments the unfortunate girl faced. The list grew long, from physiotherapy to regional barricades, to lidocaine infusions, lumbar sympathectomy, and various medications later we find ourselves in the present day of 2014.

The girl, now an adult with a heavy labour job and responsibilities, has been in constant flare since April. The pain is disgusting, smothering almost, and consumes nearly every thought! The urge to cry and scream to while away the hours is crushing! In a last ditch attempt to relieve her pain more medicines were tried but they all failed to be the Fairy Godmother she so desperately needed.

To add to her troubles, her poor right foot has now started to twist in on itself like a watered tree root. Her last remaining hope is to visit Bath and it’s mystical waters, with a look to them being able to wave their magic wand and navigate the way to her Happy Ever After! “

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I would like to say Thank You so much Emma for allowing me to post your ‘Imperfect Tale’ as you put it. I hope you’ll continue to visit my website, blogs and perhaps be a part of the forum (FORUM)

LET’S SPREAD AWARENESS of CRPS!
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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. Irene b

    What a fantastic story I have just read. I do hope you are able to live your life as much as you can. Just being apart of this brilliant website BURNING NIGHTS is a great help to us all. This website is a great support to people suffering with CRPS. The work Victoria has done is outstanding and is doing everything to raise awareness for this cause.
    Thank you for sharing your story.

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