One common symptom of hemophilia is fatigue. In most cases, however, doctors are more concerned about addressing bleeds and inhibitors — and rightfully so. But as a result, fatigue often becomes a symptom people living with hemophilia have to manage on their own.
Fatigue is different from everyday tiredness. It is chronic (constant) and doesn’t get better with rest, leaving a person feeling drained, energy-sapped, and exhausted.
Many MyHemophiliaTeam members have shared their experiences with fatigue. Many 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 many members, fatigue is accompanied by 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 member. Another shared that their muscles “are tight and tense from pain, fatigue … the infections, swelling, and fatigue persist.”
Chronic conditions like hemophilia have long been associated with fatigue. Although fatigue is not a symptom of hemophilia itself, it is connected to the problems that can accompany hemophilia, such as chronic pain, anemia, and mental health issues.
People living with hemophilia and other bleeding disorders, including von Willebrand disease, have a higher likelihood of experiencing nosebleeds and other bleeding problems that 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.
Pain, especially joint pain, is a common problem with hemophilia. A large multinational study of people with hemophilia indicated that around 89 percent of individuals living with hemophilia also live with chronic pain. Another study published in 2021 found pain is “a central issue” for those living with hemophilia.
Studies have determined that chronic pain and fatigue often go hand in hand. Chronic pain is known to cause mental health issues, including depression and anxiety. Both depression and anxiety can cause fatigue.
Chronic hepatitis C (HCV) infection frequently occurs with bleeding disorders like hemophilia. One of the most common symptoms associated with chronic HCV is fatigue — about 25 percent to 30 percent of people who develop hepatitis C may experience symptoms like fatigue.
Mental health plays a role in fatigue associated with hemophilia. According to a 2020 study, people with hemophilia have a significantly higher prevalence of depression, anxiety, and attention-deficit disorder 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.
Speak with your doctor or hematologist if you are experiencing fatigue. Your team of health care professionals can help determine what is causing the fatigue and will work with you to manage it.
One of the first steps in managing fatigue is to treat the underlying cause. There are several different 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 medication (with your doctor’s guidance) may correct the problem.
If iron-deficiency anemia is contributing to your fatigue, your doctor may recommend taking over-the-counter iron supplements.
Always talk to your doctor before taking new dietary supplements, even if they aren’t prescription. Certain supplements may increase your risk of bleeding.
Changes in diet, such as eating more iron-rich foods, are also important to 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. You can also apply cold compression or elevate a joint if it is causing acute pain.
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 and pharmaceutical approaches such as antidepressants can often help alleviate mental health issues that are causing or exacerbating your fatigue.
According to the National Hemophilia Foundation, physical therapy plays an important role alongside hemophilia treatments in managing the disease. Physical therapists can help keep the muscles and joints working the way they should and can explain safe ways to exercise after surgery, an accident, or bleeding episodes.
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.
MyHemophiliaTeam is the social network for people diagnosed with hemophilia. Thousands of members come together to ask questions, give advice, and share their experiences with others who understand life with hemophilia.
Have you dealt with fatigue with hemophilia? Share your experience and tips in the comments below or by posting on MyHemophiliaTeam.