What is CRPS?

Thomas was diagnosed with CRPS in late 2017 after many weeks of increasing pain and no answers. This post will answer some questions and give you a small insight into Thomas’ experience.

On physical constraints: It was annoying that I couldn’t move properly and get to all my lessons, or do all my Scout stuff. When the paediatrician said I couldn’t do sports, and especially never karate, it was terrible. It left a big black hole inside me.

Complex Regional Pain Syndrome (CRPS), formerly Reflex Sympathetic Dystrophy, is a poorly understood condition which affects many people in the UK and across the globe.

On being a wheelchair user: It feels kind of cool having wheels, but it’s really frustrating not being able to move properly and I felt trapped.

CRPS can cause a person to experience persistent, severe and debilitating pain. The condition may develop after an injury, surgery, stroke or heart attack, but the pain is out of proportion with the severity of the initial injury — and is neurological rather then physiological or psychological in source: conventional painkillers do not work, nor can a sufferer simply ‘think their way out of it’.

On physiotherapy and neural reprogramming treatment: It’s really interesting to see how the body [and brain] works, but it was really painful and tiring and got sooo boring. The mirror therapy makes me feel sick.

The cause of CRPS isn’t clearly understood and CRPS awareness in the UK is low. However, Burning Nights CRPS is a charity raising awareness and supporting individuals suffering with CRPS.

On medication: having X-rays and an MRI isn’t fun. When the GP said that we could try morphine [because the paracetamol & ibuprofen had zero effect] I was really scared. [We did not subject Thomas to morphine, we elected to continue with physio.]

Treatment for complex regional pain syndrome is most effective when started early. In such cases, improvement and even remission are possible. One of the treatments for CRPS is medication with tricyclic antidepressants.

On swimming: I love swimming, and it made me feel free when I couldn’t walk. It opened up what I could do & made everything so much more possible.

We are so fortunate that through his perseverance, guidance from our physiotherapist and support from Thomas’ school teachers & karate Senseis, he is now in remission. Pain can still present at any time, triggered by stress or pain elsewhere in the body, but Thomas is usually able to use his strategies to curb the pain.

This experience was very stressful for the whole family, but we realise how very lucky we have been.

We will be raising £250 each for Burning Nights CRPS through our fundraising page, sales of personalised keyrings and handmade jewellery, sponsorship of our 1,500 kicks & 1,500 punches (each) at the BB grading, plus other efforts.

Please give generously: https://uk.virginmoneygiving.com/TeamEllisKlar


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