Cath's story – complex regional pain syndrome (CRPS)
Cath has lived with severe complex regional pain syndrome (CRPS) for many years. As well as having to cope with crippling, constant pain, she has very bad allodynia – where those with the condition can’t bear for the affected limb to be touched or even slightly brushed. In Cath’s case this was her right arm.
Cath, from Sheffield, was one of the first patients to take part in a study into CRPS and spent two three-week periods undergoing intensive rehabilitation at the Royal National Hospital for Rheumatic Diseases (RNHRD) in Bath.
She also took part in a study by Dr Helen Cohen, which involved taking writing tests and looking at optical illusions. The study aimed to shed new light on the role of the brain in CRPS and hopes to explain the sometimes bizarre symptoms sufferers experience.
‘One of the big problems I have is that I can’t go to the normal doctor and tell him what has happened because they would say I’ve flipped,’ explains Cath. ‘I trapped my hand in a till at work but it was my mouth and face that were in agony. I had a tooth out and my arm swelled up. One of the tests I had in Bath involved chilli cream being rubbed on the inside of my right wrist and I felt the pain and swelling on my left wrist. You try and explain that. I end up getting quite emotional about it.
‘I try and keep in as good condition as I can so if there is a cure I’ll be ready for it; but it’s up and down.‘I want to feel reassured by this research because many doctors put my problems down to being psychological. This research is undoubtedly progress; but equally I feel very confused still.’
Cath needs constant painkillers and muscle relaxants to get through the days and, despite periods of depression, remains positive that as researchers find out more about this baffling condition, effective treatment will finally follow.
She said: ‘I still find it very isolating. It’s not something you can talk about to a neighbour if the doctor doesn’t know what I’m talking about. It’s a great relief to know that they are doing something about it in Bath.’
Read more about Dr Cohen's trial in our magazine, Arthritis Today.