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Burning hands and feet in an MPN: what erythromelalgia means | CION Cancer Clinics
Burning pain with red, hot skin in the hands or feet is called erythromelalgia. In essential thrombocythaemia and polycythaemia vera it usually comes from sticky platelets blocking tiny blood vessels, and it often settles on aspirin your haematologist advises. Gentle cooling helps during an attack. A finger or toe that turns blue, black or cold is different and needs same-day emergency care. At CION Cancer Clinics, every leukaemia, MDS and MPN case is reviewed by our haematologist and discussed at a tumour board before a plan is agreed.
On this page
- Why do my hands and feet burn when I have an MPN?
- What does MPN burning in the hands and feet feel like?
- How can you cool the burning safely?
- What treatment helps, and who does it not suit?
- Is it MPN burning or something else?
- What do people get wrong about burning feet in an MPN?
- Common questions about burning hands and feet in an MPN
The short answer
Why do my hands and feet burn when I have an MPN?
Burning pain with redness and warmth in the hands or feet is called erythromelalgia. In essential thrombocythaemia and polycythaemia vera it is usually caused by overactive platelets blocking the tiniest blood vessels, and it often settles well with aspirin prescribed by your haematologist.
What is happening in the blood vessels
Platelets are the small cells that clump together to seal a cut. In an MPN there are often too many, and they are stickier than normal. They can form tiny clumps in the smallest vessels of the fingers and toes. The skin around them becomes inflamed, hot, red and painful. The larger arteries are usually normal, which is why pulses in the foot can feel fine.
Why it deserves attention
The burning itself is miserable, but it is also a signal. It shows that platelets are affecting blood flow, which is the same process behind more serious clots. It can be the first symptom that leads to an MPN diagnosis. If you already have one, new or worsening burning is worth reporting even when the pain is bearable.
What this page cannot tell you
Burning feet have many causes, including diabetes and vitamin deficiencies. This page cannot tell you which one applies to you. A blood count, an examination and your haematologist's review can. Photos of an attack and a short diary of when it happens will help that review far more than a description from memory.
If a finger or toe turns pale, blue, purple or black, feels cold, goes numb, or develops a sore or blister that does not heal, blood flow may be seriously blocked. Go to the nearest emergency department the same day and say you have an MPN. Also call 108 at once for a drooping face, a weak arm, slurred speech or chest pain.
Not sure whether this applies to you?
Ask an oncologistRecognising it
What does MPN burning in the hands and feet feel like?
The pattern tends to be recognisable, and it helps your doctor if you can describe it.
Burning with redness
The skin looks red or dusky and feels hot to touch. The pain is burning or throbbing rather than an ache.
Comes in attacks
Episodes last from minutes to hours, often in the evening or at night, and may keep you awake. Many people start sleeping with their feet outside the blanket without realising why.
Heat makes it worse
Warm weather, blankets, closed shoes, standing for long or exercise tend to bring it on. Cooling usually brings relief.
Often affected
- Toes and soles
- Fingertips and palms
- Usually one area at a time
Tingling and small changes
Some people notice pins and needles, or brief headaches and visual flickers from the same small-vessel process elsewhere.
During an attack
How can you cool the burning safely?
Raise and rest
Sit or lie down and raise the affected hand or foot. Take off tight shoes and socks, and move away from heat such as a stove or direct sun.
Use gentle cooling
A fan, a cool room or a cool damp cloth is safer than ice. Keep the skin cool, not cold.
Never soak in ice water
Long soaking in very cold water can damage the skin and cause sores and infection. It also makes the next attack worse for some people.
Write it down
Note the time, the trigger, how long it lasted and what helped. Take a photo while the skin is red. Show both at your next review.
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Medical options
What treatment helps, and who does it not suit?
In an MPN, erythromelalgia often responds to low-dose aspirin, sometimes within days. This response is so typical that it helps doctors confirm the cause. Aspirin must still be started only on a haematologist's advice.
When aspirin is not safe
A very high platelet count can make aspirin cause bleeding, because the platelets use up a clotting protein. People with a past stomach ulcer, a bleeding disorder or an aspirin allergy may also need a different plan. In these situations, your haematologist may first bring the count down.
Treating the MPN itself
If burning keeps returning, medicines that lower the counts, such as hydroxyurea or interferon, may be added depending on your risk group, age and plans such as pregnancy. Ordinary painkillers usually help little, and some can interact with aspirin, so ask before using them regularly.
When the evidence is thinner
For burning that does not settle on aspirin or with better count control, doctors sometimes try other medicines used for nerve pain, or skin treatments that calm the small vessels. Studies of these are small, and results vary from person to person. Your haematologist may ask a pain or skin specialist to help, and should explain what is and is not known before you try anything.
Never start, stop or change aspirin or any MPN medicine on your own, even when an attack is severe.Side by side
Is it MPN burning or something else?
Commonly believed
What do people get wrong about burning feet in an MPN?
Diabetes is a common cause, but not the only one. When the skin turns red and hot and the blood count is high, an MPN needs to be considered. A simple blood count is the first step.
It may feel good for a moment, but repeated icy soaking can damage the skin and lead to ulcers and infection. Gentle cooling is safer.
The burning usually returns when aspirin stops, and aspirin also protects against larger clots. Any change must be decided with your haematologist.
The cause is in the blood vessels, not the skin surface. Creams rarely help. Controlling the platelets is what usually makes the difference. Strong creams used for long can also thin the skin.
Questions we are asked
Common questions about burning hands and feet in an MPN
Is erythromelalgia dangerous?
The burning itself is not usually dangerous, but it shows that platelets are affecting small blood vessels. That matters because the same process can lead to larger clots. Colour changes, coldness, numbness or sores that will not heal are warning signs and need same-day care.
Does burning feet mean my MPN is getting worse?
Not necessarily. It can happen when counts are only mildly raised, and it can flare with hot weather or long standing. New or worsening burning is still worth reporting, because your haematologist may want to check your counts or look again at your treatment.
How quickly does aspirin help?
In MPN-related erythromelalgia, relief often comes quickly, sometimes within days. If burning does not settle on aspirin your haematologist has advised, tell them. It may mean the cause is different, the count needs lowering, or another treatment is needed. Do not increase aspirin yourself.
Can I walk or exercise with this condition?
Yes. Staying active is good for your blood vessels and your general health. Choose cooler times of day, wear loose breathable shoes, and stop to rest and cool down if burning starts. Tell your team if exercise brings on attacks every time.
Is it the same as the burning feet diabetics get?
No. Diabetic burning feet come from nerve damage and the skin usually looks normal. MPN erythromelalgia comes from blood vessel blockage and the skin looks red and hot. Some people have both, which is why a proper examination and blood tests are needed.
Which doctor should I see first?
If you have no diagnosis yet, see your doctor and ask for a full blood count. If platelets or haemoglobin are high, a haematologist should review you. If you already have an MPN, tell your haematologist directly, as they manage both the symptom and its cause.
Can erythromelalgia happen without an MPN?
Yes. It can be inherited, linked to other illnesses or certain medicines, or have no clear cause. Those forms often do not respond to aspirin in the same way. Your blood count and history help separate them, which changes the treatment you are offered.
What should I bring to my appointment?
Bring all blood reports, a list of your medicines, any photos of your hands or feet during an attack, and your symptom diary. Photos are especially useful because the redness often fades before the doctor sees you. Bring a family member if it helps to remember what was said.
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Sources
- NHS — Erythromelalgia
- NHS — Essential thrombocythaemia
- NHLBI — Thrombocythemia and Thrombocytosis
- Leukemia & Lymphoma Society — Essential thrombocythemia
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
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Burning feet and a high platelet count?
Share your blood reports. CION's haematology team will explain whether the two are linked and what to do next. One helpline serves every CION centre.