An accident 

Ken was doing some manual labour when he caught his hand on a circular saw. The blade nearly severed Ken’s little finger and badly damaged the side of his left hand. In fact, the physical and nerve damage was so extreme that Ken believed an amputation was needed. 

Two months later, Ken visited his orthopaedic surgeon to ask for such an operation. The surgeon, however, told him something unexpected. The out-of-proportion pain in his finger, the reduced movement in his hand and the excessive hair growth around the scar were all clear symptoms of Complex Regional Pain Syndrome (CRPS). 

 “I had never heard of CRPS and it came as a shock,” recalls Ken. “It was a relief. Like they knew me. Like they knew what I had been through”. 

Living with CRPS

Ken frames his experience with CRPS optimistically. He feels he’s lucky to have burning pain present only in his little finger. To other patients experiencing CRPS in larger parts of their body, Ken gives to them his “utmost admiration and sympathy”. 

But despite Ken’s remarkable humility and kindness, it is important to remember that CRPS causes extreme discomfort – no matter the size or site of the original injury. For Ken, the burning pain in his finger can become so fierce that he describes it “as if someone [were] holding a lit blowtorch to it”. 

”Strange pains”

One of the biggest challenges to managing CRPS is the pain’s changing nature. It can feel like the rolling waves of the sea – rising to an extreme height and then easing off – or behave like a storm erupting with violent stabbing sensations, or instead feel fiercely itchy.    

“Only when you have experienced those strange pains for yourself can you fully understand [CRPS],” notes Ken.       

Finding treatments

Before his accident Ken had viewed a BBC report on the limited evidence behind antidepressants relieving patients’ pain over the medium to long term. It follows on from an earlier study issued by the Cochrane Library on the use of antidepressants for pain management in adults with chronic pain. 

One of its key findings for Ken would feature duloxetine, the only antidepressant with enough evidence for medical scientists to conclude its use brings good efficacy outcomes in the mid to long term. After Ken’s prognosis, he was prescribed this exact medicine. 

Duloxetine takes time to ease pain, often relief taking 2-4 weeks to show. For neuropathic damage like Ken’s, it can take even longer. Whilst waiting for duloxetine to take effect, he decided to use paracetamol. Unfortunately, it did not help, even as he increased his dose. 

It was only after speaking to his GP that Ken was able to receive help from the unlikely drug called Nefopam – the results would be highly positive.

A game-changer

Often prescribed when paracetamol or ibuprofen are too weak to relieve pain, nefopam is a stronger alternative. But it’s rarely given for neuropathic pain. 

Ken, however, describes “the duloxetine with nefopam combination [as] a game changer in neuropathic pain reduction.”

For some time, this combination was an alternative to amputation. It’s only now with Ken’s little finger still impeding use of his left hand that he has decided to review this option with an orthopaedic consultant. We wish him the best of luck with his outcome.  

To fellow patients

Finding information on CRPS has been crucial for Ken. It has bettered his understanding of the condition and introduced him to a network of fellow patients online. “Knowing that there are many other people out there with the same and worse issues as you is an emotional support.”

He also advises new patients to “read all you can on the subject, especially [from] people who have the same damaged area you have.” Some of these resources include “watching YouTube videos, joining Burning Nights [and] wearing orange”. 

From the bright colour of our clothes, to sharing our patients’ stories and further increasing our network of support, Burning Nights is all about raising awareness of CRPS. It’s also about giving CRPS Warriors  like Ken the opportunity to share their vital advice on managing the daily challenges that come with the condition.

That’s why we’d love to hear about your experiences with CRPS. To get involved, visit our page Share your CRPS story page and complete the online form. 

If you wish to be interviewed for more details about your experiences, don’t hesitate to tick the box. One of our team will be in touch. 

For support and community that could help you too, head to www.burningnightscrps.org/support/

Check out more inspirational stories from our CRPS warriors: 

• Chris’ Story
• Jenn’s Story
• Wiebke’s Story