My MPN is Making Me Tired. What Can I Do?
Fatigue is one of the most frequent and debilitating symptoms among patients with myeloproliferative neoplasms (MPNs), impacting nearly every aspect of a patient’s life: the ability to perform routine tasks, work, participate in activities and build and sustain relationships.
In an international survey of nearly 700 MPN patients, fatigue or tiredness was reported by 64%, 54%, and 45% of patients with essential thrombocythemia (ET), myelofibrosis (MF) and polycythemia vera (PV), respectively. Most patients experienced a reduction in quality of life, including those with low symptom burden.
“Fatigue is probably the commonest symptom in patients with all myeloproliferative disorders,” said Dr. Jon Lambert from University College Hospital in London during a 2015 interview with Patient Power Co-Founder Andrew Schorr. “We used to think it was more associated with MF, but actually polycythemia and ET patients are often commonly affected by fatigue, and it’s a symptom that we as doctors are not very good at treating.”
Here Are Some Tips to Help You Cope with MPN Fatigue
Keep a journal. Keep a daily log of when you feel most fatigued. Track your sleep time, quality of sleep, diet, activities, medications, and side effects. You may notice a pattern and be able to make a few simple changes to get more energy, such as going to bed earlier or cutting back on caffeine. Consider sharing your journal with your healthcare provider. He or she may be able to pinpoint problem areas and help you find solutions.
Practice sleep hygiene. Go to bed and wake up at the same time each day, including on the weekends. Make sure your bedroom is quiet, dark and at a comfortable temperature – not too hot. Also keep TVs, computers, and cellphones out of the bedroom. The blue light from electronic devices can fool your body into thinking it is daylight and make it harder for you to fall asleep.
Prioritize your tasks. Use the Eisenhower Matrix to figure out what tasks to delegate. Classify your tasks into one of the four squares: urgent and important (tasks to do immediately); important, but not urgent (tasks to schedule later); urgent, but not important (tasks to delegate to someone else); or neither urgent nor important (tasks to eliminate).
Pace yourself. Try to find a balance between activity and rest. Overdoing it can make you feel even more tired. Focus on those activities that are most important to you and ask for help if you need it. Make sure you plan time to rest. Let your friends and family know that you need to conserve your energy.
Eat a well-balanced diet. You may not feel like eating, but adequate nutrition will lessen your fatigue. Stick to a diet of plant-based foods along with lean sources of protein, whole grains, and low-fat dairy. Drink lots of fluids and limit or avoid caffeine and alcohol.
Get regular exercise. It may sound counterintuitive but increasing your physical activity may reduce fatigue. Studies show that cancer patients who exercise are less tired and depressed than patients who do not. Start small and work your way up. Be sure to talk to your doctor before starting an exercise program to ensure that it is safe.
Consider complementary therapies. Studies show that reducing stress, anxiety and depression can counter fatigue. Alternative therapies such as meditation, acupuncture and yoga can not only reduce stress and anxiety but also promote better sleep.
Get some air. Sit beside a lake, work in the garden, go bird watching. Getting out in nature has been shown to decrease fatigue in cancer patients.
Find support. Consider joining an MPN support group: online or in person. Connecting with other MPN patients can help you feel less lonely, reduce anxiety and depression, and help you develop skills to cope with your diagnosis and treatment. Contact the MPN Education Foundation, the MPN Research Foundation or MPN Advocacy & Education International to locate support groups in your area. Additionally, counseling may elevate your mood and help you overcome the exhaustion.
Ask your doctor about medications. Some antidepressants may help combat fatigue. Additionally, several small trials have found an increase in energy with the use of stimulants such as methylphenidate (Ritalin), dexmethylphenidate (Focalin) and modafinil (Provigil). Medications may also be available to treat the underlying cause of your fatigue, such as anemia.
Bottom line: “The most important thing is to have that conversation with your physician to try to identify, A) how bad it is and whether it is having a significant effect on your quality of life and, B) what the possible cause might be,” Dr. Lambert said.
“If it’s related to the treatment you may want to have a discussion about changing either the dose or changing to a different treatment. If, though, it’s related more to the actual underlying condition, then there’s a number of different things that can be done, but they don’t all work in each patient so it’s a matter of trying to work out what’s going to work best for you.”
Note: The above tips were adapted from MPN Voice, the National Comprehensive Cancer Network and previous Patient Power interviews.