One common symptom associated with hemophilia is fatigue. However, in most cases, doctors are more concerned about addressing bleeds and inhibitors. And rightfully so, since the disease can be life-threatening if untreated.
As a result, fatigue often becomes a symptom people living with hemophilia have to manage on their own. Read on to find out why, along with seven tips that may help.
Fatigue is different from everyday tiredness. It’s chronic (constant) and doesn’t get better with rest. This can leave you feeling drained, energy-sapped, and exhausted.
Many MyHemophiliaTeam members have shared their experiences with fatigue. Some describe fatigue as debilitating.
“Some days,” one member shared, “I feel like I got hit by a bus.”
Another member wrote, “I woke up feeling like I never slept. I am so exhausted all the time and just want to feel better.”
For some people with hemophilia, fatigue occurs along with other symptoms like pain, especially in the muscles and joints. “My legs and knees are swollen and hot to the touch. I’m very fatigued,” wrote one MyHemophiliaTeam member.
Another shared that their muscles “are tight and tense from pain, fatigue” and that “the infections, swelling, and fatigue persist.”
Chronic medical conditions like hemophilia have long been associated with fatigue. Fatigue isn’t a symptom of hemophilia itself. But it’s connected to the problems that can accompany hemophilia, such as chronic pain, anemia, and mental health issues.
Hemophilia and anemia frequently go hand in hand. People living with hemophilia and other inherited bleeding disorders (including von Willebrand disease, the most common bleeding disorder) have a higher risk of nosebleeds and other bleeding problems. This can make them more likely to develop iron-deficiency anemia.
Anemia is a condition in which you don’t have enough healthy red blood cells in your body. Red blood cells carry oxygen to your organs so that the organs can function properly. With too few of these cells, anemia can cause fatigue.
Iron-deficiency anemia can be diagnosed with a simple blood test. It’s usually treated by taking iron supplements. If anemia is severe, some people may need blood transfusions, but this is uncommon.
Chronic pain, especially joint pain, is a common problem in people with hemophilia. A large study of people with hemophilia noted that around 89 percent have chronic pain that interferes with their daily life.
A 2021 meta-analysis found that the prevalence and impact of hemophilia pain is underestimated. This study also found that a higher proportion of people with severe hemophilia live with chronic pain compared to those with mild or moderate hemophilia.
Studies have noted that chronic pain and fatigue often go hand in hand. Chronic pain is also linked with mental health issues, including depression and anxiety. Both depression and anxiety are risk factors associated with fatigue.
A 2026 study showed that people with hemophilia have significantly worse quality of sleep compared to people without hemophilia. Higher levels of pain correlated with poorer sleep quality in this study.
Hemophilia pain can lead to an increase in sleep disturbances, which may cause severe fatigue, creating a cycle that’s hard to stop.
Chronic hepatitis C virus (HCV) infection frequently occurs with bleeding disorders like hemophilia. One of the most common symptoms linked with chronic HCV is fatigue. About 20 percent of people who develop hepatitis C may experience fatigue.
Mental health plays a role in fatigue associated with hemophilia. According to a 2020 study, people with hemophilia have a significantly higher rate of depression, anxiety, and attention-deficit/hyperactivity disorder (ADHD) than the general population. Several other studies have found similar results.
Mental health concerns like anxiety and depression are often associated with fatigue. The stress of everyday life alone can make you feel tired. When you add pain and illness to the mix, these stressors can increase, contributing to a cycle of fatigue, depression, and anxiety.
Make sure your doctor or hematologist is aware of all of your symptoms. Your team of healthcare professionals can help pinpoint what’s causing your fatigue and work with you to manage it.
Your healthcare team can provide medical advice. But there are also lifestyle changes that can help you feel your best. Living with hemophilia doesn’t have to be an exhausting existence.
Read on to learn some tips to help you cope with the fatigue that can come with hemophilia.
One of the first steps in managing fatigue is to make sure you’re effectively treating the underlying cause. There are several treatments for hemophilia that can help prevent or control excessive bleeding. You and your doctor can work together to find the best hemophilia treatment plan for you.
You should also ask if fatigue can be a side effect of your medications. If this is the case, switching to a different drug (with your doctor’s guidance) may correct the problem.
The fatigue linked with iron-deficiency anemia can sneak up on you as the iron in your body becomes more depleted. If your healthcare provider determines that iron-deficiency anemia is contributing to your fatigue, your doctor may recommend taking over-the-counter iron supplements.
Always talk to your hematology team before taking new dietary supplements, even if they aren’t prescription. Many common supplements may increase your risk of bleeding.
For some people, changes in diet, such as eating more iron-rich foods, may help prevent future problems with anemia.
Managing pain that contributes to fatigue may take several forms, including physical therapy, pain relievers, and allowing your joints to rest. Explore other strategies to help manage joint pain, including applying cold compression or elevating a joint if it’s causing acute pain.
Learning some practical methods to conserve energy can help when you’re feeling fatigued. Divide tasks into manageable chunks and do a small amount at a time. Pacing yourself may allow you to perform your everyday activities, just at a slower rate.
Listen to your body. One day you may rest more frequently — the next day, you might feel up to more activity. Whatever feels right is best for your body that day.
If you suspect your mental health is causing fatigue in hemophilia, get screened for depression and anxiety and talk to your doctor about possible treatments. Cognitive behavioral therapy (CBT, a form of talk therapy) and medications such as antidepressants may help ease mental health issues that are causing your fatigue or making it worse.
According to the National Bleeding Disorders Foundation (previously the National Hemophilia Foundation), physical therapy plays an important role alongside traditional medical treatments in managing the disease.
Physical therapists can help keep the muscles and joints working the way they should. They can also explain safe ways to exercise after surgeries, accidents, or bleeding episodes. An exercise plan developed along with a physical therapist can be an important way to both boost your mood and stay fit.
Eating a healthy, nutritious diet plays an important role in managing fatigue with hemophilia. People living with hemophilia can benefit from a diet that contains iron-rich foods, whole grains, low- or no-fat foods, and low-sugar treats. Try to avoid foods high in fat or sugar.
On MyHemophiliaTeam, people share their experiences with hemophilia, get advice, and find support from others who understand.
Have you dealt with fatigue with hemophilia? Let others know in the comments below.
Get updates directly to your inbox.
Become a member to get even more
This is a member-feature!
Sign up for free to view article comments.
How do you get hemophilia
We'd love to hear from you! Please share your name and email to post and read comments.
You'll also get the latest articles directly to your inbox.