A man with an incredibly rare condition that makes his skin burn, says the pain feels as bad as ‘second-degree burns’.
Lee Barker, from Limehouse, London, has erythromelalgia – a condition that causes episodes of burning pain and redness in the feet, hands, arms, legs, ears and face.
‘The pain is so bad that it’s like I’m literally sitting in an oven,’ Lee tells Metro.co.uk.
‘It’s hard to describe how it makes you feel. All I can say is – imagine if your bare hands touched a hot stove or an oven or an open flame – how much that would hurt. It’s literally burning me.’
Lee developed the condition in 2013, but it took a long time for medical professionals to work out what was really going on.
‘I went to so many hospital appointments, at least 10,’ says Lee. ‘They thought it was a rash and gave me steroid cream. That never worked, and it actually made things worse as I found out at that time I was actually allergic to the cream.’
Lee is hoping to raise awareness of this illness, as he wants other people to recognise the painful and embarrassing symptoms in order to find relief earlier than he did.
‘It started with red dots and then one morning I woke up and my hands were just bright red. Then eventually this happened to my face and neck too.’
When the condition flares up, Lee gets so red that people think he is constantly blushing. Even simple things like taking a shower, or walking into a warm room can set the condition off.
‘It affects my daily life because I have to watch out for hot and cold temperatures,’ says Lee.
‘This could be just walking into a really hot or cold room. When I get very tired I feel burning pain, especially in my face.
‘Taking a shower daily is also a big problem because I have to make sure the water is at the right temperature.
‘If it’s hot or cold outside, it can trigger my condition and cause me to have a flare-up. If I eat spicy food I get a very bad burning flare-up. Even cooking food causes me pain because using a stove or oven or touching anything hot brings on a flare-up.’
Other symptoms of the condition include tiredness and extreme fatigue. Lee also has sleep apnoea and wears a CPAP machine to try to improve his sleep.
‘The pain is so bad that I have to put my hands under the cold tap,’ explains Lee. ‘It’s like my body, especially my hands, are literally on fire. They become swollen and bright red.
‘I get very bad symptoms daily, including nausea, dizziness, pins and needles, loss of feeling in the body and itching skin.’
Sadly, there is no known cure for erythromelalgia, but Lee takes 15 pills every morning and six pills every night to try to alleviate some of the symptoms.
‘Treatment also includes an infusion every three months. It takes five days, and six hours on each day,’ adds Lee. ‘The treatment thins the blood vessels is very painful and you do get side effects instantly – a severe headache, body aches, hot flushes, nausea and fatigue.’
Lee has to stay in a hotel next to the hospital each time he has an infusion treatment because it takes so long.
Before being diagnosed, Lee didn’t even know that erythromelalgia existed. But after researching the condition he made a self-referral to the Royal Free Hospital in Hampstead – and they have now been treating him for the last six years.
‘This is the only hospital that can deal with this kind of rare condition,’ says Lee. ‘People come from really far away to have treatment.’
Tests for the condition include dipping hands into a bucket of cold or warm water and then recording how quickly the hands and feet warm up.
Lee says it’s vital to raise awareness about this condition because so many people have no clue what could be causing their intense and painful symptoms.
‘I talk to doctors and to other people and they have never heard of this condition,’ says Lee. ‘When I go to have my treatment I have only once found someone with the same condition. The other patients have Raynauds with Scleroderma, which are common conditions linked to each other.’
‘The more we talk about it, the more people we will be able to help.
‘There are people suffering who don’t even know what the condition is. Like me, they may have been trying to get help but no one knows what it is, and then you end up waiting years to be diagnosed.
‘I took me around three years to be diagnosed. During that time I was left to suffer.’
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source https://metro.co.uk/2020/01/20/man-rare-skin-condition-says-burning-pain-feels-like-sitting-oven-12087642/
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