A graduate has spoken out about the ultra-rare condition which leaves her in so much pain her limbs cannot be touched and means she has to wash ‘like a starfish,’ as the sensation of water on her skin is so agonising.
Previously fit and healthy Canterbury Christ Church university graduate Abi Harmer, 22, from Kent, woke up one morning in January 2016 to find she had completely lost the use of her left hand.
Diagnosed with complex regional pain syndrome, causing unexplained agonising pain which is so severe that even the feeling of a light breeze against her skin creates jolts of pain, she said: ‘I usually tell my friends it feels like the affected area is in a bucket of ice cold water.
‘But, instead of moving it, when you can’t stand it any longer, you just have to keep it there.
‘When I wash, I have to try to keep my foot and arm out of the water because it’s so painful. I have to hold them out and my body is in a star position.
‘My sleep is one of the things that is affected the most. I get about two to five hours a night because of the pain. I struggle to get to sleep and then if my limbs rub against the sheets or the pillow, it wakes me up again.’
Abi first started experiencing symptoms in January 2015, when she felt a peculiar feeling in her left arm – which felt like water trickling down the inside of her arm and hand.
At first, she simply put it down to the cold weather, but on 27 January she woke with a burning pain in her arm and was unable to move it. Her skin was alarmingly red, and so she consulted her GP immediately and was referred for an urgent MRI scan at Kent and Canterbury hospital to check there were no trapped nerves.
When the results came back clear a few weeks later doctors were perplexed.
Abi said: ‘It was getting worse and worse and I developed a skin sensitivity that was so bad, I couldn’t even stand my clothes touching it. Any sensation at all was awful.
‘But the doctors were baffled and at one point, they questioned if it was psychosocial.’
Over the next four months, Abi was tested for trapped nerves and neurological problems. Meanwhile, the pain grew steadily worse until, eventually, she started experiencing the same symptoms in her right leg, meaning she struggled to stand and had to use crutches with just one hand.
‘The pain was getting worse and I just wanted an answer,’ she said.
In May, Abi was seeing a physiotherapist to try to regain movement when she told him what she was going through.
He mentioned complex regional pain syndrome (CRPS), and, although she had never heard of it before, when she researched it online she found the symptoms listed matched her own.
In mid-August, she was given an appointment to see a specialist at central London’s National Hospital for Neurology and Neurosurgery, also known as Queen Square.
There, the official diagnosis was given and, six months later, it was confirmed by Dr Goebel, a world CRPS specialist at the Walton Centre in Liverpool.
Relieved to finally have some answers, Abi was also heartbroken to discover there is no cure for CRPS and that some sufferers never improve.
‘I was only in my 20s and still at uni, so I was scared because I wasn’t sure if I would ever be able to walk or use my hand properly again,’ she said.
‘I was left-handed, so it meant I had to learn to do all sorts of things again – I had to learn to write with my right hand, eat and even do stupid things like brush my teeth.
‘My parents Claire and Mark, both 50, have had to help me wash as I can only use one hand now. I couldn’t do it without them’.
Despite her ordeal, Abi remained determined to finish her religion, philosophy and ethics degree, graduating last September.
Over time, she has also been working to desensitise the areas affected by CRPS by slowly introducing fabric and water to her skin.
She explained: ‘I can’t let any chemicals touch my skin, or it comes out in a rash that looks like I have been burnt.
‘I have been introducing water and I have little patches of fabric that I have slowly introduced, which means now I am able to wear clothes over it. It means I can go out more as I can protect it from things like the wind or rain that cause a lot of pain.’
Abi says that in terms of support, her parents have been amazing at looking after her and taking her anywhere she needs to go – however she says it’s difficult to do things like going out with her friends.