A recent report in Time detailed a man’s personal experience with a rare condition that most of us would have never heard of – Erythromelalgia. But what happens to people experiencing ‘EM’ is even more jarring – they randomly feel like they are ‘burning alive’.
Author Je Banach detailed his first experience with EM when on his birthday in 2018, he woke up at night to a weird feeling in his left hand. “It started with a slight itch on my thumb, which quickly turned into a different feeling – the feeling that the thumb was swelling, followed by the same feeling in my fingers and parts of my palm until my hand was almost twice its normal size,” he wrote for Time.
In the morning, Je Banach went to see an orthopedist who gave him an injection to prevent further swelling. However, shortly after, a stranger thing happened: “my hands felt like they were on fire – a painful and strange occurrence that I would soon come to know as the hallmark of erythromelalgia, or “man on fire syndrome.”
News18 explains what the condition is:
Erythromelalgia (EM), often known as “Man on Fire” syndrome, is a chronic pain illness marked by scorching sensation in the hands and feet. Most IEM patients’ chronic pain cannot be eased by standard pain relievers, making this condition a huge unmet medical need, explains a report by Axion Biosystems.
Erythromelalgia symptoms might appear at any age. Some people are afflicted from childhood, while others are only impacted as adults, says the NHS.
What Does It Feel Like to Have EM?
Banach in his description explains to the reader what having EM actually feels like. “When I use the word “burn,” I imagine most readers will interpret that as “hot,” as if parts of my body are just very, very warm. But it’s crucial here that you understand that what I’m actually talking about is burning,” he says.
According to Banach, “hand torches feel like putting my hand on the stovetop, bringing back memories of sticking my hands in snow as a kid and foolishly holding them under hot water to warm them up”.
He calls a flickering in his ears like someone is “holding a lighter to my skin”.
To him, facial reflections take him back to the feeling of a horrible sunburn, and the sensation in his feet is “like walking on hot coals”. “And there’s a “hangover” on days after eruptions — a feeling I liken to rubbing your hands and feet on pink insulation or a tray of broken glass,” he says.
How Frequent are EM Episodes?
Erythromelalgia patients often experience pain bouts that span from a few minutes to several days, NHS says in its report. These flare-ups typically begin with itching and progress to pain, as well as painful mottled, red skin that feels warm or heated to the touch.
And a number of things may trigger these flare-ups, from exercising to wearing warm socks, gloves or tight shoes, or entering a warm room, feeling stressed, drinking alcohol or eating spicy food, or being dehydrated.
What Causes this Syndrome and is There Any Cure?
There is thought to be a primary version of the disease caused by genetic factors, as well as a secondary version induced by underlying ailments including polycythemia vera and neuropathy, or autoimmune diseases like lupus and rheumatoid arthritis, explains Banach in his report.
Episodes may become more frequent over time or remain constant for years or decades. For individuals, the illness can quickly worsen and become crippling within months. Efforts to cool burned body parts with water or ice can result in serious infection and gangrene, as well as further damage to blood vessels, he says.
There have been reports of persons wishing to amputate their own limbs or, worse, to commit suicide due to the agonising pain.
As per NHS, Erythromelalgia can be caused by another medical issue or a defective gene passed from a parent.
It can also be caused by a number of conditions, including: a blood illness, such as polycythaemia; nerve damage, such as that produced by peripheral neuropathy; multiple sclerosis (MS); and an autoimmune disorder, such as lupus or rheumatoid arthritis, in which the immune system attacks the body’s own tissues.
Topical therapies, oral drugs, Intravenous medications, and at-home trigger control are common erythromelalgia treatments. One’s erythromelalgia treatment plan will be determined by the symptoms, illness progression, and response to first medications, according to Healthline.
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