There’s tiredness, and then there’s fatigue. The latter is underlined by excessive tiredness that doesn’t resolve with adequate rest. If you have immune thrombocytopenia (ITP), you may be familiar with the feeling of fatigue, a symptom that can greatly affect your quality of life.

In this article, we explain why people with ITP experience fatigue. We also share five ways to try to manage it. If you have questions about fatigue and ITP, schedule an appointment with your health care provider or a doctor who treats immune system disorders.

The Connection Between Fatigue and ITP

Immune thrombocytopenia, also known as idiopathic thrombocytopenic purpura and persistent or chronic immune thrombocytopenic purpura, disrupts platelet production. Platelets are cells produced in the bone marrow that help blood clot. A low platelet count can lead to an increased risk of bruising or bleeding.

Not everyone with ITP needs treatment. If you don’t have bleeding symptoms or a concerningly low platelet count, your doctor may choose to monitor you with regular blood tests. Those who do need treatment will likely start with corticosteroids or other medication. People with severe ITP may need other medications or a splenectomy (surgery to remove the spleen).

People with ITP commonly report fatigue. In a study published by the American Society of Hematology, 50 percent of adults diagnosed with ITP said they experience fatigue. It was the third most common side effect, behind petechiae (tiny spots on the skin caused by bleeding) and bruising. In another study from the ITP Support Association, up to 90 percent of people with ITP reported fatigue.

If you have a child or adolescent with ITP who is abnormally grouchy or acting up, they may be experiencing fatigue. While it is often associated with being overtired and having low energy, fatigue may manifest as irritability in children with ITP.

There are a few reasons people with ITP may experience fatigue.

Platelet Count

Although the cause of ITP-related fatigue is not fully understood, thrombocytopenia (low platelet levels) may be a factor. Some people who experience fatigue with ITP report that it is worse when their platelet levels are low. A study published in the European Journal of Haematology came to the same conclusion: People with ITP and lower platelet counts had increased fatigue.

Anemia, which is generally associated with normal or high platelet counts and low iron, can sometimes lead to ITP. In this case, anemia, which is also called low hemoglobin, can be the cause of fatigue.

Inflammation

Inflammation may also be to blame for some cases of fatigue with ITP. While further research is needed to establish this connection with ITP, experts believe that inflammation causes fatigue in certain chronic diseases, and ITP has similar processes that may promote inflammation.

Treatment Options

Prednisone, dexamethasone, and other corticosteroids are common first-line treatment options for ITP and other autoimmune diseases like systemic lupus erythematosus (lupus). They work by immunosuppression (suppressing the immune system) and are generally effective at increasing platelet counts. However, long-term steroid use can cause unwanted side effects, including fatigue.

High-dose intravenous immunoglobulin (IVIG) is another first-line therapy for ITP that generally gets good response rates but can also cause fatigue. IVIG is a medical treatment made up of antibodies that stop the immune system from destroying platelets in your body.

Rituximab (Rituxan) is a second-line therapy for ITP that increases platelet counts but may cause fatigue. In a randomized trial, 22 percent of people with ITP who took rituximab reported fatigue, compared to 8 percent of those who took the placebo (an inactive substance used in clinical trials to analyze the effectiveness of a drug or treatment). As per Mayo Clinic, another rituximab side effect to consider is that it may reduce the effectiveness of vaccinations, which you may need if your doctor recommends a splenectomy.

Other ITP medications associated with fatigue include romiplostim (Nplate), eltrombopag (Promacta), and azathioprine (Imuran).

If you experience therapy-related fatigue or other side effects, tell your doctor. They may be able to adjust your dose, suggest another treatment option, or provide a timeline to set expectations for how long you will need to cope with fatigue to give your current treatment a chance to work.

Whether you are looking for strategies to handle your fatigue or want to help someone you love, here are five ways to manage fatigue with ITP.

1. Get a Good Night’s Rest

A good night’s sleep has many benefits, including supporting healthy brain function and maintaining physical health. In children and adolescents, sleep is essential for growth and development.

If you have ITP, you may feel tired during the day but unable to sleep at night. Or, you may respond to daytime fatigue by taking a nap, which can prevent you from falling asleep at bedtime.

Tips for better sleep include:

• Maintaining a consistent sleep schedule
• Reducing cell phone use before bed
• Limiting daytime naps
• Avoiding or limiting caffeine, alcohol, and nicotine
• Creating a restful environment
• Meditating to ease anxiety
• Taking a bubble bath or reading before bed
• Wearing earplugs and an eye mask

You may need to experiment with different strategies to find a sleep routine that works for you, but it’s worth the effort. If you continue to have trouble falling asleep or staying asleep, ask your doctor for help.

2. Exercise

You may not feel like exercising when you are tired, but studies have shown that exercise can boost energy levels. For some, it can also help address the mental and emotional side effects of living with an autoimmune disorder, especially if you have chronic ITP and have been experiencing side effects for a while. Some doctors define chronic ITP as immune thrombocytopenia that has lasted at least six months, while others define it as longer than a year.

Low-intensity exercises include:

• Walking
• Yoga
• Tai chi
• Swimming
• Indoor cycling
• Gentle fitness classes

Talk to your doctor before starting a new fitness regimen or increasing the intensity of your current routine. Also, ask about the risk of bleeding before trying a contact sport like football or a potentially dangerous outdoor activity like rock climbing. If you have ITP, severe bleeding can be life-threatening.

3. Eat a Healthy Diet

While there is no official ITP diet designed to combat fatigue or raise low platelet counts, eating a healthy balance of fresh fruits, vegetables, proteins, and carbohydrates can help your body feel its best.

Healthy ITP diet tips include:

• Eating a variety of fruits and vegetables
• Choosing whole-grain versions of bread, pasta, and other starchy foods
• Drinking plenty of water
• Limiting food and drinks that are high in fat or sugar
• Avoiding foods that cause inflammation, like red meat and processed foods
• Focusing on lean meat and fatty fish, like salmon and albacore tuna
• Asking your doctor before taking any dietary supplements or vitamins

Understandably, you may not feel like cooking if you are tired. Experiment with healthy, low-effort meals instead. Incorporate ingredients like canned or rotisserie chicken, precut or frozen vegetables, and microwavable rice or potatoes. Some people find it helps to meal prep on days they feel well, so they have healthy, ready-to-eat meals on days they don’t. For questions about diet and ITP fatigue, consult your health care provider or a registered dietitian.

4. Reduce Stress

If you are experiencing fatigue as a side effect of ITP, consider your emotional well-being. Is stress making you tired and affecting your health-related quality of life? Studies have shown that reducing stress can boost energy.

Tips for reducing stress include:

• Spending time with friends
• Listening to calming music
• Going for a walk
• Meditating or practicing mindfulness
• Stretching your muscles
• Focusing on who and what you are grateful for
• Watching something on TV that makes you laugh

Stress can lead to chronic inflammation, which can increase your risk of heart disease, dementia, and other diseases. It can also release stress hormones and elevate your blood pressure (hypertension). If stress is a constant in your life, ask your health care provider to refer you to a therapist, social worker, or support group for help.

5. Ask for Help

Whether you are the parent of someone with pediatric ITP or living with this rare autoimmune disorder, you do not have to do this alone. Tell your friends and family you need help. Often, people want to be there for those they love but don’t know how, so they say, “Call me if you need anything!” The more specific you can be with your requests, the better.

Ways people can help include:

• Grocery shopping
• Watching your children
• Making dinner
• Doing the laundry
• Running errands
• Mowing the lawn
• Listening when you need to vent

Your clinician and care team can help, too. If you want to explore new treatment options, tell them. If you want a referral to a therapist or social worker, ask for one. If your care team can’t help with all of your requests at once, schedule a follow-up appointment.

Living with ITP fatigue can be difficult, but help is available. Also, connecting with others who can relate to your experience may help you feel less alone.

Talk With Others Who Understand

On myITPcenter, the site for people with immune thrombocytopenia and their loved ones, people come together to gain a new understanding of ITP and connect with others who understand life with ITP.

Do you experience ITP fatigue? How do you manage it? Share your experience in the comments below.