Coping with fatigue caused by systemic mastocytosis

One of the most common symptoms of systemic mastocytosis (SM) is fatigue, varying from mild to severe.

When combined with other symptoms such as flushing, skin inflammation and irritation, headaches, lightheadedness, nausea, diarrhea, abdominal pain and anxiety, fatigue can be difficult to manage. It is possible to cope with fatigue and other symptoms by taking medication, adopting a healthy lifestyle and adapting your daily activities to your physical capacities.

What is systemic mastocytosis?

A rare, chronic white blood cell disorder that occurs following the random mutation of the KIT gene, systemic mastocytosis mostly affects adults–men and women–aged 50 years and older. This mutation causes mast cells in the skin tissue, internal organs and bones (bone marrow) to multiply uncontrollably, triggering allergic reactions and releasing excessive levels of histamines and other chemicals into the bloodstream. This causes an often heavy symptom burden, which can be managed with medication and lifestyle changes. In the more aggressive form of the disorder, life expectancy can be significantly impacted. To date, no cure has been found.

What triggers cause SM flare-ups?

There are certain triggers that activate the immune response of mast cells, which in turn causes symptom flare-ups as the body reacts to the histamine and other chemicals. These triggers can include sudden changes in temperature, friction on the skin, emotional and physical stress, insect bites, alcohol, spicy food, physical exertion and some medications.

Learn more about SM FAQs

Types of systemic mastocytosis

According to the WHO classifications of 2022, systemic macrocytosis can be divided into five subgroups–two non-advanced and three advanced. Symptom management needs to be tailored according to each subtype.

Indolent systemic mastocytosis (ISM): Up to 80% of cases. Symptoms impact quality of life but not life expectancy.

Smoldering systemic mastocytosis (SSM): Similar to ISM but may progress to more advanced subtypes over time.

Aggressive systemic mastocytosis (ASM): Heavy symptom burden, leads to damage of internal organs and has a worse prognosis, reducing life expectancy to less than six years.

Systemic mastocytosis with an associated hematologic neoplasm (SM-AHN): About 20% of cases. This may lead to other blood disorders.

Mast cell leukemia: Very rare and (less than 1% of cases). This reduces life expectancy to one to two years.

The symptom of fatigue is common to all types of SM.

Managing fatigue in systemic macrocytosis

By effectively managing physical and emotional fatigue you will reduce the risk of triggering episodes and contribute to supporting daily quality of life.

Rest regularly

Coping with fatigue means adapting your lifestyle and daily commitments to your physical capacity. If you are tired, you need to rest. Try to take 30-minute naps during the day to support your energy levels, and at times plan a day on the couch or in bed.

Eat a low-histamine diet

Support your gut and overall health by adhering to a low-histamine diet. Favor fresh, unprocessed food and avoid foods such as aged cheeses, spinach, tomatoes, citrus fruits, bananas, chocolate and alcohol.

Exercise regularly, however lightly

Low impact physical exercise, like stretching or yoga, can be beneficial to your energy levels, stimulating your circulation. Remember not to overdo it, as you may tire yourself further or inadvertently trigger a symptom flare-up.

Alternative therapies

Medication is key to symptom management, but alternative therapies can also be beneficial. Acupuncture, meditation, dietary supplements and homeopathy may help support your immune system and overall well-being, and boost your energy levels.