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There’s tiredness, and then there’s fatigue. Fatigue is more than just being sleepy or worn out — it’s a deep, ongoing tiredness that doesn’t go away even after you rest. If you have immune thrombocytopenia (ITP), you may already know how draining it can be and how much it can affect your quality of life.
In this article, we’ll look at why people with ITP often feel fatigue and share five ways to manage it.
If you have questions about fatigue and ITP, schedule an appointment with your healthcare provider or a doctor who treats immune system conditions.
If you’ve ever wondered, “Does ITP cause fatigue?” the answer is yes. Fatigue is a common symptom of ITP.
In a study published by the American Society of Hematology, 50 percent of adults diagnosed with ITP said they experienced fatigue. It was the third most common symptom, after petechiae (tiny spots on the skin caused by bleeding) and bruising. In focus groups from the ITP Support Association, up to 90 percent of people with ITP reported fatigue.
Children and adolescents with ITP can also experience fatigue. Sometimes it shows up differently than it does in adults. Instead of saying they feel tired, children and teens might seem unusually cranky, emotional, or restless — all signs that they may be feeling worn down.
Here are a few reasons people with ITP may experience fatigue.
Can low platelets cause extreme fatigue? There isn’t one single cause of ITP-related fatigue, but thrombocytopenia (low platelet levels) may be a factor. Some people who experience fatigue with ITP report that it’s worse when their platelet levels are low. A study published in the European Journal of Haematology also found that people with ITP who had lower platelet counts reported higher levels of fatigue. However, another study in the journal Blood showed that fatigue in ITP is likely caused by a mix of different factors, not just platelet counts alone.
Inflammation may also play a role in fatigue for people with ITP. More research is needed to fully understand this connection, but scientists believe inflammation causes fatigue in certain chronic diseases. Since ITP involves similar immune system activity, it may trigger inflammation that leads to tiredness.
Sometimes fatigue is caused by another health condition that occurs alongside ITP, known as a comorbidity. Common conditions linked to both ITP and fatigue include:
Certain treatments for ITP may increase tiredness as a side effect.
Prednisone, dexamethasone, and other corticosteroids are common first-line treatment options for ITP and other autoimmune diseases. They work by immunosuppression (suppressing the immune system) and help raise 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. This medical treatment is made up of antibodies that stop the immune system from destroying your platelets in your body. Fatigue or tiredness is a common side effect of IVIG.
Rituximab (Rituxan) is a second-line therapy for ITP. Rituximab increases platelet counts, but it may also cause fatigue. In one study, 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 check if a drug or treatment is effective).
Other ITP medications that may cause fatigue as a side effect include fostamatinib (Tavalisse), eltrombopag (Promacta), and azathioprine (Imuran).
If you’re feeling tired or notice new side effects after starting treatment, talk with your healthcare provider. They may be able to adjust your dose, suggest another treatment option, or help you understand what to expect as your treatment continues.
Keep in mind that raising your platelet levels doesn’t always make fatigue go away completely. Because fatigue in ITP usually has more than one cause, managing it often takes time, patience, and support from your care team.
Whether you’re trying to manage your own fatigue or support someone you care about, here are five ways to help manage fatigue with ITP:
Getting enough sleep is one of the best things you can do for your body and mind. Sleep helps your brain work properly and helps you maintain your physical health. In children and adolescents, sleep is also essential for growth and development.
If you have ITP, you may feel tired during the day but have trouble sleeping at night. Daytime naps can also make it harder to fall asleep later.
Here are some tips for better sleep:
You may need to try different routines to find what works best for you. If sleep problems continue, talk with your doctor — they can help find the cause and suggest solutions.
When you’re already tired, exercise might be the last thing you want to do — but it can actually help boost your energy. Studies show that regular movement can improve both physical energy and mood.
For some, it can also help ease the stress and anxiety of living with an autoimmune disorder. This can be especially helpful if you have chronic ITP and have been dealing with fatigue for a long time.
Low-intensity exercises that may be good for immune thrombocytopenia include:
Talk to your doctor before starting a new exercise plan or increasing the intensity of your current routine. Ask about the risk of bleeding before trying a contact sport like football or a risky outdoor activity like rock climbing. If you have ITP, severe bleeding from an injury can be life-threatening.
There’s no official ITP diet designed to combat fatigue or raise low platelet counts, but eating a balanced diet of fresh fruits, vegetables, proteins, and carbohydrates can help your body feel its best.
Here are some healthy ITP diet tips:
Some studies have shown that using papaya leaf extract as a dietary supplement may help improve platelet counts, but talk to your doctor before trying it.
If fatigue makes it hard to cook, try healthy, low-effort meals, like:
It can be helpful to prep meals on days you feel well, so you always have healthy, ready-to-eat meals on days when cooking is hard. For questions about diet and ITP fatigue, talk to your healthcare provider or a registered dietitian.
Living with ITP can be stressful, and stress can make fatigue worse and affect your quality of life. Reducing your stress levels may help boost your energy.
Try these tips for reducing stress:
Long-term stress can lead to chronic inflammation, which can increase your risk of heart disease, dementia, and other diseases. It can also raise your blood pressure by triggering the release of stress hormones.
If stress is something you deal with often, don’t ignore it. Ask your healthcare provider to refer you to a therapist, social worker, or support group for help.
Whether you are living with this rare autoimmune disorder or are the parent of someone with pediatric ITP, you do not have to go through this alone. Let your friends and family know you need help. Many people want to help but aren’t sure how, so giving them specific ideas can make it easier for them to step in. The more specific you can be, the better.
Here are some ways others can help:
Your healthcare team can help, too. Tell them if you’re struggling with fatigue, want to try new treatment options, or need a referral to a therapist or social worker. If they can’t address everything in one visit, schedule a follow-up appointment.
Sometimes, fatigue may not be caused only by ITP. Ask your healthcare provider about getting tested for vitamin or nutrient deficiencies or sleep disorders like sleep apnea, in case something other than ITP is causing your fatigue.
Living with ITP fatigue can be difficult, but help is available. Connecting with others who can relate to your experience may also help you feel less alone.
On myITPcenter, people share their experiences with ITP, get advice, and find support from others who understand.
Do you experience ITP fatigue? How do you manage it? Let others know in the comments below.
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Denise2
My wonderful Grandson, at age 15 was dx'd with ITP, and struggles with fatigue 😩. He's under supervision of his Dr, but I'm beginning to learn, as a Lupus patient, that I may also have it. Can anyone tell me if small peticheae on my stomach could be a sign? I developed these spots all over my distended abdomen approximately 1 yr ago, but had no idea that it could be a significant ITP..I'm 66 y.o, & I correlated these with some sort of age spots. However, I'm exhausted most of the time, but do not know if my Dr.has run tests that would suggest the condition. Anyone?? I'd like to hear opinions on this, as it is a holiday weekend & unable to talk with Rheumatologist yet..getting concerned..ALSO am bruising like crazy! Bloody nose, on & off. Help, plz!