The NIH reports that 15% of EM cases stem from SCN9A gene mutations. This gene provides instructions so that sodium is delivered into cells, making them send electrical signals.
However, many cases of EM are caused by unknown factors. Some experts believe the condition comes from abnormal blood vessel widening and narrowing, which can cause burning pain in the feet and hands.
EM that isn’t caused by genetics is referred to as secondary EM. Other possible causes may include autoimmune disorders, peripheral neuropathy, and several blood disorders.
EM Is A Rare Disease
A 2008 Mayo Clinic study found that erythromelalgia affects about 1.3 out of 100,000 people, while a New Zealand study reported 15 per 100,000. Unfortunately, that’s why many primary care physicians often don’t even know what it is.
Women are affected by EM more than men, and some report having the issue since childhood. A 2018 clinical study found that symptoms often start before the age of 10.
For diagnosis, the first step is to speak with your physician, who may recommend that a specialist evaluate you. Some specialists who can diagnose and treat your EM include dermatologists, vascular surgeons, and neurologists.
Various Treatment Options
Unfortunately, there isn’t one treatment for erythromelalgia. For people with secondary EM, the best treatments usually relieve the burning and tingling sensations in the arms, hands, feet, and other body parts.
Some of the treatments your doctor may recommend are prescription medications for pain, skin creams, psychological counseling, and even surgery.
Some doctors may prescribe antidepressants, anticonvulsants, or calcium channel blockers. The latter medication can improve blood flow to the hands and feet.
Surgery is regarded as a last resort for people with severe pain in their hands and feet. It involves severing specific nerves that transmit pain to those areas.
Some patients find there’s no apparent reason for an EM episode. But research suggests that some may be caused by a higher body temperature, drinking alcohol, and eating spicy food.
Other patients report they have EM episodes when they exercise or go into a warm room. This is why some EM patients often don’t wear shoes or stand in the cold outside – to stay cool and relieve their symptoms.
Flares can last from minutes to hours and even days. Unfortunately, most people with EM cannot usually get through a day without having an episode.
Many Support Organizations
Erythromelalgia can be a frustrating and painful disease because diagnosis and treatment are difficult. But it’s vital that people with EM know they aren’t alone.
There are many advocacy and support groups available online that can connect you with EM patients and their families. These groups, such as The Erythromelalgia Association, constantly push for new treatments and research to cure.
Now that you’ve learned more about EM, you should be able to move forward with managing your symptoms and finding treatment options. Remember that you can get psychological counseling online to help you manage the emotional and mental aspects of living with EM.
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