What fatigue is (and isn’t) and why does it happen?

Most patients who are diagnosed with a bone marrow failure disease say they experience fatigue and one recent study reported that more than 90 percent of patients with MDS experience excessive, ongoing fatigue.

The fatigue experienced by patients is a persistent sense of physical, emotional, and/or cognitive tiredness or exhaustion that is not related to recent activity, and that interferes with the ability to function normally.

There are misconceptions about experiencing fatigue, including:

  • It will go away if you just sleep or rest more
  • It means you are just depressed
  • If you were really tired, you couldn’t do anything
  • You are trying to do too much

Doctors don’t know exactly what causes excessive fatigue in patients, but they do have some ideas. Some think that it is caused by the abnormal secretion of substances that impair metabolism or affect normal muscle function. Other causes may include:

  • Chemotherapy and other medications and treatments
  • Sleep disturbances
  • Pain
  • Psychological factors such as depression or anxiety
  • Poor or insufficient nutrition (nutritional needs can change depending on the disease and current treatments)
  • Hormonal imbalances
  • Other illnesses such as uncontrolled diabetes
  • Decreased physical activity

Unfortunately, fatigue in patients with bone marrow failure diseases and cancer often goes unreported. Why does this happen? Several apprehensions contribute to this, including:

  • Hesitancy to report fatigue for fear of not receiving maximum treatment dosages
  • Belief that fatigue is an expected symptom that is untreatable and that you should cope with it
  • Concern that you will be perceived as a complainer
  • Fear that it is a sign of recurrent or advancing disease

8 Tips for facing up to fatigue

Fatigue is a real condition for patients with bone marrow failure diseases and it requires support and help. There are interventions that can help improve quality of life and reduce fatigue. Here are a few things to consider:

  • Be proactive. Tell your doctor about your fatigue and request an evaluation.
  • Conserve your energy. Set priorities, pace yourself, delegate tasks to others, and schedule activities at times of the day when you have the most energy. Understand the pattern of your day and week and plan around.
  • Get the best rest possible: If you are not sleeping well, ask your doctor about sleep therapy.
  • Consider starting an exercise program. There is a strong body of research showing that, at least for cancer patients, moderate regular exercise decreases fatigue, emotional distress and sleep disturbances, and increases functional quality of life. Never start an exercise program without checking with your doctor first. Be sure to plan your exercise for when you feel best, for example, early in day if you are more fatigued in the late afternoon.
  • Manage any coexisting health conditions. Address your whole health and any related problems. Make sure you see a doctor to manage these effectively.
  • Have an exit or backup plan. When you attend an activity or gathering, be sure to have a plan that will allow you to leave easily and quickly if you become too tired.
  • Consider using appropriate medications. Certain stimulants, antidepressants, and steroids can help. Talk to your doctor about what may be right for you.
  • Avoid alcohol and large meals. Although tempting, you’ll feel less tired if you only consume alcohol in very small amount, avoid excessive helping of food. Avoid sugary foods. Eat protein, fat and fiber at every meal.

It is important to consult with your treating physician before beginning an exercise program, changing your diet, or taking any over-the-counter medications or dietary supplement.