Erythromelalgia

Overview

Erythromelalgia is a rare condition that causes episodes of burning pain, redness, and heat, usually in the feet and hands. The skin may look bright red and feel hot to touch. Flares are often triggered by warmth, exercise, standing, or stress, and many people feel better by cooling the skin or raising the limb. It is not contagious.

It is rare. Many doctors may never see a case, so getting the right diagnosis can take time.

Anyone can get it, including children and older adults. The inherited form often starts in younger people, while cases linked to another health condition are more often found in older adults. Some families have more than one affected person.

Symptoms

Common symptoms

• Burning, throbbing, or pins-and-needles pain in the feet or hands.
• Skin that turns red or pink and feels hot during a flare.
• Swelling, tightness, or shiny skin during a flare.
• Symptoms that get worse with warmth, exercise, standing, tight socks or shoes, or stress.
• Relief from cooling the skin, fanning, walking on a cool floor, or raising the limb.
• Flares that last minutes, hours, or sometimes days.
• Skin that may look normal between flares.

Symptoms in children

• Children may cry or refuse to wear socks or shoes.
• They may say their feet feel hot rather than use the word burning.
• They may avoid play, school, or sports because of pain.
• Sleep can be disturbed, and they may kick off covers to cool their feet.
• Keep a simple diary of flares and triggers to show the doctor.

Symptoms in older adults

• It may be more likely to be linked to another health condition.
• Symptoms can be mistaken for poor circulation, nerve pain, gout, or infection.
• Health conditions and some medicines can contribute, so bring a full medicine list to appointments.
• Pain and swelling can affect walking and increase fall risk.
• Older skin is more fragile, so cooling must be done gently to avoid skin damage.

Causes

Main causes

• Primary erythromelalgia: a problem with small blood vessels and nerves, sometimes caused by an inherited gene change.
• Secondary erythromelalgia: caused by or linked to another condition, such as a blood condition, an immune system problem, diabetes, or nerve damage.
• Sometimes no clear cause is found.
• Some medicines can trigger or worsen symptoms. Do not stop or change a medicine on your own; ask your doctor or pharmacist.

Risk factors

• A family history of erythromelalgia.
• Health conditions that affect the blood, nerves, or immune system.
• Diabetes or other conditions that can damage nerves.
• Taking certain medicines, which a doctor can review.

When to see a doctor

See a doctor urgently if:

• You have your first severe flare.
• You see signs of infection, such as spreading redness, fever, pus, or feeling very unwell.
• The skin blisters, breaks, or forms an open sore.
• Pain is severe and not controlled.
• You develop new numbness, weakness, or trouble moving a limb.

Book a routine appointment if:

• You have repeated flares of red, hot, burning hands or feet.
• Symptoms affect sleep, work, school, or daily activities.
• You want help finding triggers and a treatment plan.
• You need a review of medicines or other health conditions.
• You feel anxious or low because of ongoing pain.

Diagnosis

There is no single test for erythromelalgia. A doctor will ask about your symptoms, triggers, what helps, your medical history, and your family history. They will examine your skin, ideally during a flare. They may use a symptom diary or photos to understand the pattern. Tests are often used to look for other conditions that can cause similar symptoms.

Tests that may be done

• Blood tests to check blood counts, blood sugar, thyroid, kidney and liver function, and markers of inflammation or immune activity.
• Urine tests.
• Nerve function tests if nerve damage is suspected.
• Imaging tests if another cause is suspected.
• Genetic counselling or testing in selected cases, especially if the condition runs in the family.
• Referral to a specialist, such as a skin, nerve, pain, or blood specialist.

What to expect at your appointment

Diagnosis can take time because the condition is rare and symptoms overlap with other problems. Take photos of flares, note triggers and relief, and bring a list of all medicines. Ask questions and ask for a referral if needed.

Treatment

There is no single cure, but symptoms can often be managed. The goals are to reduce flares, treat any underlying condition, protect the skin, and improve sleep and daily life. Treatment is tailored to each person.

Self-care at home

• Stay cool when possible: use fans, a cool room, loose clothing, and cotton socks if they help.
• Cool the skin gently with a cool damp cloth or short cool soak. Do not put ice directly on the skin or soak for long periods, as this can damage skin.
• Raise the feet or hands during a flare.
• Notice and avoid triggers such as heat, hot showers, standing for long periods, tight footwear, stress, or alcohol if it affects you.
• Rest and pace activities. Gentle movement can help prevent stiffness.
• Keep a flare diary and check your skin daily for cuts, blisters, or sores.
• Manage stress with relaxation, breathing exercises, or counselling if it helps.

Medical treatments

Doctors may suggest medicines that calm overactive nerves, improve blood flow, or reduce pain. The choice depends on the type of erythromelalgia, how severe it is, and other health conditions. Treating an underlying condition can improve symptoms. Some people need specialist pain care, physical therapy, or psychological support. No single treatment works for everyone, so it may take time to find the right plan.

When is surgery considered?

Surgery is not a usual treatment for erythromelalgia. If a doctor finds a separate treatable condition causing it, surgery might be considered for that condition. Nerve procedures are rare and only done in specialist care.

Living with this condition

Plan around your triggers and keep cooling safe. Tell school, work, or carers about your flare plan. Keep shoes and socks comfortable, and have cool water or a fan nearby when you can. Pace activities and rest before you become overheated.

Lifestyle tips

• Wear loose, comfortable shoes and avoid tight socks or shoes that trigger pain.
• Avoid hot environments, hot baths, and strenuous activity in heat.
• If you smoke, ask for help to stop, as smoking can affect circulation.
• Limit alcohol if you notice it triggers flares.
• Keep a regular sleep routine and a cool bedroom.
• Do gentle exercise that does not overheat you, such as swimming in a cool pool if suitable.
• Ask your doctor or pharmacist to review medicines that may be contributing.

Diet and exercise

No special diet is proven to treat erythromelalgia. Eat a balanced diet and stay hydrated. Gentle exercise can help your general health, but avoid overheating. Talk to your healthcare team before starting a new intense exercise plan.

Mental health and emotional wellbeing

Ongoing pain can cause anxiety, low mood, and sleep problems. This is understandable. Tell your doctor how you feel. If you feel unsafe or have thoughts of harming yourself, call your local emergency number or crisis service right away.

Prevention

The inherited form cannot be prevented. Flares can often be reduced by avoiding triggers, cooling safely, and protecting the skin. If another condition is causing it, treating that condition may improve symptoms.

Vaccines

There is no vaccine for erythromelalgia.

Screening programmes

There is no routine screening for the general public. If you have a family history, talk to your doctor about whether genetic counselling is right for you.

Complications

If left untreated

• Ongoing pain, poor sleep, and tiredness.
• Anxiety, low mood, or depression.
• Skin damage from too much cooling, such as frostbite-like injury or infection.
• Sores, ulcers, or scarring, especially on the feet.
• Trouble walking, working, or doing daily tasks.
• Rarely, serious infection if the skin breaks.

Long-term outlook

Many people improve with trigger management, skin care, and treatment. Some people have flares long-term, but the condition is not usually life-threatening. It can affect quality of life, so regular support from your healthcare team matters. There are ways to reduce symptoms and protect your skin.

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