What Is It Like To Live With Erythromelalgia?

Erythromelalgia (EM) is a rare medical condition that causes swelling and redness in parts of the body, especially the hands and feet. People with EM often endure searing pain, and it’s identified by medical professionals as primary or secondary, depending on if there is an underlying medical problem.

Keep reading to learn more about erythromelalgia and what it’s like to live with it. And please remember that plenty of help is available to manage this condition.

For example, you can reach out to a qualified mental health professional online to help you deal with your EM.

What Causes EM?

The NIH reports that 15% of EM cases – known as primary EM – are caused by genetic mutations, specifically in the SCN9A gene. This gene provides instructions for making parts of sodium channels that carry the element into cells to create and send electrical signals.

The sodium channels are located in your nerve cells that send pain signals to the brain and spine. Mutations that cause EM to lead to more transmissions of pain signals lead to the common signs and symptoms of the health condition.

In some of the 15% of cases, the patient inherited the mutation from a parent. But in other cases, a new genetic mutation occurs for the first time in a person who has no history of EM in the family.

In the other cases – known as secondary EM – the cause of EM is unknown. Evidence points to abnormalities in the widening and narrowing of certain blood vessels, which can cause abnormal blood flow to your hands and feet.

There also can be many non-genetic causes of erythromelalgia that researchers still haven’t identified.

What Patients Say It’s Like To Live With EM

The Mighty online publication asked a group of erythromelalgia patients in 2018 what it’s like to live with EM. Here’s what several had to say:

  • EM feels like you’re burning from the inside out; the pain from a flare-up can bring one to tears, and all one can do is wait for the pain to pass.
  • If the EM is in your hands or feet, it interferes with your ability to do a lot, such as walk, or do almost anything with your hands. The condition feels somewhat like you have a bad sunburn or a skinned part of the body that doesn’t stop stinging.
  • EM feels like someone poured gasoline on the affected body part and lit a match. It also can feel like someone poured acid over your head, and there is no escape. You’re trapped in your burning body.
  • Erythromelalgia can feel like you have coal in your veins instead of blood, and it keeps lighting on fire at various times – day and night.
  • When it affects the hands and feet, it feels like you burned your body parts with hot oil in a frying pan. However, you don’t feel more pain or heat from the burn because your skin was already burning.
  • This condition feels like you’re walking on coal, but you can’t really walk. Instead, you stand on the coals, which engulf your body in flames.
  • “I feel like I’m on fire. EM can make grown men cry and scream.”

What Causes EM?

As noted earlier, there are many possible causes of this condition, but it varies, and much is still unknown. However, there are risk factors and causes that may be related to primary and secondary EM:

Genetics And Age

The primary form of the condition happens most in adolescents and children, while the secondary form happens more often in adults.

Assorted Diseases

People who have various diseases, such as lupus or diabetes may be more likely to have erythromelalgia. The condition also may be triggered by other health problems, such as multiple sclerosis and myeloproliferative diseases.

Other Factors

EM also may be caused by heavy metal poisoning; spicy foods and drinking too much alcohol, and nerve damage from frostbite and sciatica.

Erythromelalgia is a challenging condition that has many possible causes, but there is plenty of hope. There are support groups online and much more information can be found on The Erythromelalgia Association website.

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