Living with Erythromelalgia

Imagine feeling as if you were sunburnt every day of your life. Jayne Nicholl (pictured left) suffers from Erythromelalgia (EM) a rare, currently incurable condition, which causes her feet to be constantly inflamed, itchy, bright red and sore. Jayne has had EM since the day she was born but until she was in her 20's she didn't even know what it was. In spite of her condition she manages to hold down a job but can't stand for long periods of time. She feels people are staring at her and finds it difficult to live a 'normal' life.

The Early Days
Jayne was born with bright red feet and hands. She was a terrible baby for her mum and dad and never slept through the night, but of course as a baby she couldn't say what was wrong. She remembers as a toddler, coming downstairs in the evening, telling her parents that she had heat on her feet. They would rub them, and put cream on them, but it never stopped the pain completely so they resorted to bathing her feet in a cold bath, which soothed them. However she now knows not to soak her feet excessively, but at the time her parents were desperate and none of the paediatricians or doctors they saw knew what it was or suggested any alternative treatment.

By the time she was16 it was out of control and Jayne was pretty much in constant pain. She spent some time in hospital where one doctor said 'Jane, you're weird, we don't know what to do with you'. This was a misguided and unsympathetic thing to say to a teenager who was at rock bottom, not having slept through the night for about 6 months.

It wasn't until Jayne got to University that she finally had a name for her condition. She connected to the Internet and typed in 'hot feet', and it linked her through to the Erythromelalgia Association (TEA). www.erythromelalgia.org . As soon as she hit the website she just cried and cried. Suddenly she could see that there were other people out there who understood what she was going through. Ever since then she's had a lot of support and sympathetic emails which have really helped her to know that she isn't suffering alone.

Living with Erythromelalgia
Much of the time - including when she's at work - Jayne's feet are cooled by fans. She can't take public transport and relies on air conditioning in her company car and fans under her desk at work. She can't bathe her feet in cold water as much as she'd like to, because her skin can break down after excessive bathing. Jayne finds it very hard to get a balance between what she wants to do and what she should do. She describes the symptoms like really bad sunburn, an incessant burning which she wants to scratch and rub.When the pain is intense, the hardest thing is getting about and it makes it very difficult to concentrate on even the most basic things, especially after a bad night's sleep. There are days when she can go walking but there are others when she can't even leave the house, because just a short walk can make her feet burn.

Finding a Cure and Raising Awareness
Jayne knows of about 50 people in the UK with Erythromelalgia, but thinks there must be more out there who don't know what's wrong with them. Even though it is now recognised it is very rare and even at a skin hospital she attended, they didn't know what it was and had to look it up in a medical textbook. For years she was misdiagnosed and at one point had to be given an epidural for pain, a catheter in her back, and an infusion of drugs… no one knew what to do with her.

All the specialists I've ever seen suggest one course of action and then basically given up on her when it hasn't work. She has been taking medication for 10 years now and relies entirely on sympathetic GPs and her own research. She is on a low dose of anti-depressants - not because she's depressed, but because they stop serotonin flow and that's supposed to help pain management .She has even tried an anti-convulsant, given to people with epilepsy, which had horrible side-effects. She has used many very intensive moisturisers, Chinese herbal medicine, homeopathy, hypnotherapy, acupuncture, none of which has really helped.