Fatigue is a big challenge for many patients with myeloproliferative neoplasms (MPNs), perhaps the worst in patients with myelofibrosis (MF), but clearly it is present in many patients with essential thrombocythaemia (ET) and polycythaemia vera (PV) as well. Multiple things can contribute to this including the disease, medications that are used to treat the MPN or sometimes the change in blood counts, either too high or too low.
Anaemia, low haemoglobin in the blood, may also contribute to fatigue and is often associated with MPNs. Your haematologist or medical consultant will always check this if fatigue is an issue but in some cases it may be difficult to improve the haemoglobin level without affecting other blood cell counts.
Patients report different levels of fatigue ranging from an inability to do anything much in a single day to mild symptoms which do not interfere much with daily life.
Common effects may include:
- Lack of energy to complete every day tasks
- Forgetfulness
- Weakness
- Sleep disturbances
- Emotional instability
- Loss of sex drive or strength for sex
- Dizziness or light-headedness
- Difficulties speaking/thinking/making decisions
Coping with fatigue
Plan your day(s) to include rest and be realistic about what is possible for you to achieve.
If your fatigue is very debilitating and interfering with your ability to live a normal life ask if you could have a visit from an occupational therapist who could identify ways of helping you to save your energy.
Ask for help if necessary and don’t feel guilty if you do!
Our leaflet ‘Fighting Fatigue in MPN‘ has some very useful hints and tips on coping with fatigue.
Managing day to day
Look for ways to save energy around the house and ask for help from family members.
Pace yourself and don’t be embarrassed if you need to spread out household tasks over the week or if you can afford a cleaner, this is the time to do it!
Use labour saving devices – e.g. a wheeled shopping bag/shopping trolley, dishwasher etc
Coping with fatigue at work
Some MPN patients really struggle with work and fatigue and find that they need to give up working because of this, some reduce the amount of time at work whilst some cope well and do not need to make any changes.
For those MPN patients who do have problems, it will help to talk to the human resources officer and your manager to discuss ways of managing work and your fatigue.
As MPNs are classified as a blood cancer a patient will generally be protected by the Disability Discrimination Act. Patients should not be victimised or discriminated against and employers are expected to make reasonable adjustments to support employees at work. Some things that may help at work are:
- Changing your hours and avoiding the rush hour to and from work
- Working from home for some of the time if possible
- Asking for help from others when needed
- Negotiating short breaks to rest if needed
- If your work involves lifting or physical effort, looking at finding ways to lighten the workload.
Sleep
Whilst fatigue may increase the need for sleep, where possible try to keep a routine for sleeping and aim for quality sleep rather than irregular, disrupted sleep times. Practical pointers include:
- Regular wake up times will help most people’s sleep routines
- Try to maintain an ambient room temperature – avoid extremes of heat or cold
- Don’t sleep for too long – too much sleep can lead to shallow sleep patterns
- Take some regular exercise where possible which over a period of time can help in deeper sleep patterns
- Avoid stimulants and limit your alcohol intake as these may exacerbate any problems with getting a deep sleep; e.g. drinking alcohol will help you to fall asleep quickly but then sleep tends to be interrupted and shallow later in the night.
Talk about it
People with MPNs deal with their illness in different ways but it is important to talk about how fatigue is affecting you, both at home work and in any areas of your life so that adjustments can be made where necessary.
Talk to your GP or haematologist and keep a record of when you feel fatigued.
You may find it helpful to talk to others who have an MPN either through a buddy, email buddies@mpnvoice.org.uk or via the online forum HealthUnlocked.
Professor Ruben Mesa shares his top ten tips for fighting fatigue:
- Getting enough sleep. Making time to have adequate sleep is key. We all burn our candle at both ends, but having enough sleep is key.
- Walking. A good walking programme, almost despite our level of health, is vital. It always needs to be done in consultation with your doctor and appropriate for your level of fitness.
- Eating well. Eating well needs to be individualized. For some individuals who are losing weight with their disease and maybe eating more, changing your calories around; for others it is decreasing some of the amount of fat in your diet; eating more vegetables, eating more fruits. Diet needs to be individualized, but your body responds very specifically to the fuel you put in it.
- Make time for reading. Set time aside to read things that you enjoy. This will exercise your mind, decrease stress, and can decrease fatigue.
- Comfortable shoes. Walking is a part of our everyday activity and having the right shoes that fit us well and support our feet adequately is key for trying to minimize stress in our legs and help us feel well.
- Water activities. Consider swimming or other activities in the water, again under the direction of your doctor. The buoyancy of water can help you stretch and exercise many muscles that you might have a harder time doing on land.
- Go outdoors. Being outdoors, fresh air, sunshine with appropriate sunscreen or hats or shade are instrumental for helping you to feel better.
- Stretching. Our muscles need stretching and likewise can benefit from massage.
- Less time on the computer. Computers can be helpful but too much time on electronic gadgets, computers, iPads, Blackberry and other gizmos takes valuable time away from the enjoyment of life and likely adds to fatigue and eye strain.
- Work-Life balance. If work brings you enjoyment, wonderful however for MPN patients, particularly the more serious the disease, the ideal is a lifestyle that is balanced, both through your energy level and health, so that stress can be best managed.
