For the first few weeks after transplant, you may have expected to be tired. After all, you’d been through a lot physically and emotionally. But, if you’re still feeling extremely tired for months, or even years, after your transplant, you should talk to your health care team.
You may have chronic fatigue, and it can be treated.
“Chronic fatigue is more than the usual feeling of tiredness after exercise or not getting a good night’s sleep. It doesn’t simply go away with rest,” says Faye Bullio, ACSW, LISW-S, a blood and marrow transplant (BMT) clinical social worker at Nationwide Children’s Hospital.
Fatigue can be hard to talk about
People living with chronic fatigue after transplant may find it hard to talk about. It’s not a symptom that’s easily seen or diagnosed with a test. But, it can affect many parts of your life, including your emotions.
“Depression and fatigue often go hand in hand. When fatigue isn’t treated, it can increase your risk of feeling a sense of hopelessness. And that can lead to symptoms of depression,” says Christine Lawrence, LISW-S, a BMT social worker from the Cleveland Clinic.
Those feelings of hopelessness and depression can lower your ability or motivation to take care of yourself, says Christine. And that can lead to skipping out on physical and social activities – exactly the sort of activities that can help fight fatigue. That’s why it’s so important to talk about fatigue and treat it, she adds.
Causes of fatigue
A major cause of fatigue is the treatment just before transplant. But that fatigue usually goes away within weeks after transplant.
If you have fatigue months or years after transplant, it could be due to your medicines, poor sleep or both. For example, some medicines that treat graft-versus-host disease (GVHD) can also make it hard to sleep. Other possible causes of fatigue include pain, poor nutrition or anemia (low red blood cells).
“Feeling worried or stressed is also common after a transplant, even months or years later. And feeling worried can be exhausting,” says Faye. After transplant, children can have anxiety and stress, too.
“Children may need more support to cope with how they are feeling,” Faye says. Siblings, too, may need extra support as they adjust to life after their brother or sister’s transplant.
“If you think your child is showing signs of fatigue, be sure to tell your health care team,” Faye says. Changes in the thyroid after transplant can also cause fatigue in children, according to Faye.
Some people may not tell their health care team how fatigue is affecting them, says Christine. They may think there’s no treatment or they should be grateful for being alive. But that’s unfortunate, she says, because there may be simple ways to help you have more energy. Your transplant doctor might be able to make changes to your medicines or treat other causes of fatigue.
According to Christine, studies show that cognitive behavior therapy (CBT) can help ease some fatigue. People treated with CBT work with a trained counselor to learn how to re-frame negative thoughts into a more positive outlook.
Other tips to cope with fatigue include:
- Eat a nutritious diet and do light exercise, like walking, every day. This can improve your mood and sleep
- Start a journal. Write down when you had the most energy, and then schedule activities for those times
- Use relaxation techniques, visual imagery, meditation, or spiritual practices to ease anxiety and stress
- Attend a support group to learn how other people were able to manage fatigue after transplant
- Talk with a trained professional, like a counselor or therapist, about your thoughts and feelings. If you also have symptoms of depression, treatment for that may also lessen fatigue
Faye recommends similar strategies for treating fatigue in children. Be sure to set realistic, age-appropriate goals and activities.
Finally, both social workers emphasize that caregivers can suffer from fatigue, too. If you’re a caregiver experiencing fatigue, seek treatment if you feel overwhelmed.
Are you a transplant patient who had fatigue after your transplant? If so, please share your insights in the comments below on what helped (and what didn’t help) you fight your fatigue.