8 ways to fight fatigue with PNH
Last updated May 19, 2025, by Agata Boxe
Fact-checked by Joana Carvalho, PhD
Exhaustion is a daily reality for many people with paroxysmal nocturnal hemoglobinuria (PNH), which causes the destruction of blood cells and leads to overwhelming fatigue that can make even simple tasks feel impossible.
While there is no quick fix to PNH fatigue, taking a well-rounded approach to managing your energy can make a difference. Here are some ways to fight PNH fatigue and take back some control over your daily life.
1. Conserve energy
Living with PNH can deplete your energy stores, so you may need to be more deliberate about managing them.
One way to do this is to consider the “spoon theory,” which uses spoons to represent the amount of energy you have.
You start each day with a set number of metaphorical “spoons,” or energy units, and every task — from making breakfast to grabbing groceries — takes away one or more of them. This concept can help you plan daily activities so you can conserve your energy when needed.
To make the most of your spoons, try:
- doing the most demanding work tasks when you feel most rested
- taking regular breaks throughout the day
- avoiding packing too many activities into one day
- keeping a fatigue diary to track energy levels and planning activities accordingly
- setting priorities to focus on important tasks and delegating others when possible
- not overdoing it on the “good” days
- asking for help with household chores.
2. Ask for accommodations
Managing fatigue at work can be one of the most challenging aspects of living with PNH, but small adjustments can make a big difference.
Consider asking your employer for accommodations, such as:
- a remote or hybrid work schedule
- flexible work hours
- frequent breaks
- an ergonomic workspace
- modified job duties.
3. Talk to your doctor
If your fatigue is affecting your day-to-day life, talk to your doctor. They may tweak your PNH management plan by adjusting your treatment, suggesting certain medications, or recommending other ways to help you manage your energy levels.
Make sure to attend your appointments as often as necessary and don’t hesitate to advocate for yourself and tell them how you’re feeling. The more they know about your fatigue, the more they’ll be able to help you.
4. Get moving
When you’re tired, moving your body is probably the last thing you want to do. However, movement may actually boost your energy levels.
To find a balance, ask your doctor what the best exercises are for your symptoms and fitness level. You can also work with a physical therapist to create a workout program tailored to your needs.
5. Manage stress
Living with PNH can be stressful, and that mental strain can contribute to your fatigue. To manage your stress, consider:
- mindfulness and deep breathing
- talking to a therapist
- self-forgiveness for making mistakes
- relaxing hobbies like gardening or doing puzzles.
Finding support from peers with the disease through the PNH News Facebook group can also make a difference.
6. Get enough sleep
PNH symptoms, such as fatigue and stomach pain, can make sleeping difficult, but a good night’s sleep is essential to feeling rested and restored.
If you’ve had a hard time sleeping, try:
- going to sleep and getting up at the same time every day, including weekends
- avoiding using devices shortly before bed
- relaxing before going to sleep by reading or meditating.
7. Eat a well-balanced diet and hydrate
While there is no specific diet for PNH, eating a well-balanced diet may help support your overall energy levels. A nutritious diet gives your body the fuel it needs to function more efficiently, especially when you’re managing chronic fatigue.
Staying hydrated is also important. Water helps your organs work properly and supports the removal of waste, which is key when your body is breaking down red blood cells.
Talk to your doctor about what eating plan is best for you. You may also benefit from meeting with a registered dietitian or nutritionist to tailor your plan to your specific health needs.
8. Don’t be afraid to say ‘no’
Some days are just more difficult than others, so give yourself a break. Allow yourself to say “no” to invites and to cancel social commitments. Your friends and family members should understand if you are too exhausted to attend a gathering.
Never be afraid to put yourself first. By managing your energy, getting the right support, listening to your body, and making time for rest, you’ll be better equipped to fight PNH fatigue and feel more like yourself.
PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
