Fatigue is a common symptom in myelodysplastic syndromes (MDS), even during treatment. While you may not be able to completely eliminate feelings of exhaustion, lifestyle strategies can help you manage your energy levels.

Myelodysplastic syndromes (MDS) are a group of diseases that affect the bone marrow and blood with varying degrees of severity.

In MDS, abnormal stem cells in your bone marrow produce immature red blood cells, white blood cells, or platelets. These immature blood cells have reduced function and often a shortened lifespan that leads to low blood cell counts known as “cytopenias.”

The type of MDS you’re diagnosed with depends on which blood cells are affected and what specific changes are seen in those cells and in your bone marrow.

For approximately 1 in 3 people diagnosed with MDS, the condition progresses to acute myeloid leukemia (AML), a rapidly growing type of bone marrow cancer.

Fatigue is one of the most common symptoms experienced in MDS, affecting the majority of people with this diagnosis.

An older study from 2014, found fatigue was the most prominent symptom among 280 people with high risk MDS, affecting 92% of participants.

A 2019 observational study spanning 10 years also observed fatigue as the most common symptom in a pool of 914 people, affecting 86.7% of participants.

Research presented at the 2023 American Society of Hematology Exposition confirmed fatigue as the most reported symptom in MDS and also noted severe fatigue was associated with poorer mortality outcomes.

Fatigue is a dynamic experience. In MDS, it can be brought on by natural physiological causes, like cytopenias, but it can also be affected by your emotional state, circumstances in your day, co-occurring medical conditions, cancer treatment, and lifestyle factors, among many other variables.

Cytopenias

Initially, cytopenias and other disease processes may set the stage for fatigue in MDS.

For the majority of people, MDS affects red blood cells. Cytopenia of red blood cells, or when too few red blood cells are in the bloodstream, causes anemia. Having anemia means you don’t have enough red blood cells or enough of the protein in red blood cells (hemoglobin) to be able to transport adequate levels of oxygen throughout the body.

Low oxygen levels naturally cause fatigue and weakness by preventing cells from efficiently utilizing energy and expelling waste products. According to a review from 2020, anemia is the primary candidate for explaining MDS fatigue.

Not everyone diagnosed with MDS has a form that affects red blood cell production, though. MDS can also cause white blood cell cytopenias, like leukopenia or, more specifically, neutropenia, as well as platelet cytopenia, known as thrombocytopenia.

When white blood cells are too low, your body becomes less able to fight off pathogens like bacteria and viruses. Persistent infections can tax your body constantly, resulting in chronic fatigue.

If your platelets are too low, your ability to neutralize bleeding in the body diminishes. Even minor bumps can cause lasting bruising. Being in a state of regular injury can put demands on your body that cause enduring fatigue.

Because MDS may affect multiple types of blood cells, many of these factors can overlap.

Other factors related to fatigue

Cytopenias are just one possible physiological contributor to fatigue in MDS. Inflammatory processes, hormone disruption, oxidative stress, and metabolic dysfunction that arise as the result of cancer can also impact energy levels.

And when all of these factors are compounded by everyday experiences that are tiring — like having an inflexible schedule — fatigue in MDS can feel overwhelming.

Below are some strategies you can use to help make fatigue more manageable.

Get the best rest

Not sleeping well can cause fatigue even if you don’t live with MDS. Focusing on sleep hygiene, or beneficial sleep habits, can help limit how sleep contributes to your fatigue levels.

Ways you can improve your sleep include:

  • keeping a consistent sleep-wake schedule
  • avoiding electronic screen time before bed
  • keeping your room dark, quiet, and cool
  • avoiding heavy meals or stimulants before bed
  • getting daily exercise

If you’re consistently experiencing sleep challenges, your doctor can rule out or confirm the presence of a sleep disorder.

Conserve energy

If you know fatigue is going to be a challenge in your day, prioritizing where your energy goes allows you to do what needs to be done before you hit a wall of exhaustion. Keeping a written schedule each day can help you plan ahead, especially if there are particularly tiring events.

Exercise

Exercising when you’re fatigued may sound counterintuitive, but according to a small study from 2019, exercise can help combat fatigue in MDS. Being active can boost your blood circulation, help reduce stress, and support immune function.

Manage any other health conditions

If you’re living with a co-occurring (comorbid) condition that isn’t being well managed, your body has to split energy and resources between that condition and MDS, which may worsen fatigue. Managing comorbidities can also help reduce any fatigue that might be specific to those conditions.

Have a backup plan for going out

MDS fatigue can be severe and you might not be able to predict how it affects you one day to the next. If you have plans to go out, making “just in case” arrangements, like having a loved one on standby to drive, can help.

Avoid certain meals and alcohol

Large meals, alcohol, and excessive sugar can contribute to feelings of fatigue in some people. While sugar may give you a short-term energy boost, it often leads to an energy crash soon after.

Talk with your doctor

As a common symptom in MDS, fatigue can have multiple interconnected causes. Discussing fatigue with your doctor can help you find the best management strategies possible. Your doctor can also evaluate how your current MDS treatments may impact fatigue and make changes as necessary.

MDS outlooks can vary significantly between people, with survival rates spanning months to years.

Your individual outlook will depend on your overall health, age, type of MDS, and treatment response. Your outlook also depends on whether MDS progresses to AML.

The MDS Foundation offers a risk assessment calculator that can let you know where you fall within current prognostic scoring systems. The calculator results are not definitive, however, and are not intended to replace guidance from your doctor.

Your doctor has insight into the individual factors that may impact your MDS outlook and can provide a more detailed explanation of different possible MDS outcomes.

Fatigue is one of the most common symptoms reported in MDS, a group of diseases that affect how your bone marrow produces blood cells.

Too-low blood cell counts, called cytopenias, can lay the foundation for fatigue in MDS but aren’t the only possible cause. Other physiological changes associated with cancer, as well as emotional state, stress level, treatments, and lifestyle, can all play a role.

Conserving energy, planning ahead for your day, and focusing on quality sleep are just a few ways you can help combat MDS-related fatigue.