What is fatigue?
“Fatigue has been described as an overwhelming sense of tiredness, a lack of energy and a feeling of exhaustion. It is more than a one-off feeling of tiredness that will go away after sleeping well.” – Parkinsons UK
People with Parkinson’s commonly experience fatigue.
WHY? – primary vs secondary
It can be quite a challenge to ensure your activity levels remain high (as advised to continue living well with Parkinson’s) when everyday activities leave you feeling more tired than they used to. Your Occupational Therapist and Physiotherapist can work with you where you are, to help you slowly start increasing your activity levels whilst managing fatigue.
We run a fatigue management group at St Luke’s Hospital across neurological disciplines, where you will reflect on your experiences of fatigue and be given education, tips and advice to self-manage your fatigue to maximise your energy levels for the things you want/need to do.
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Fatigue in Parkinson’s may also be related to other symptoms or features of the condition. Such as:
- the timing and dosage of your medication. This can mean that you feel energetic and capable of doing everyday jobs at certain times of the day, but not at other times.
- tremor, stiffness or involuntary movements, which may put stress on your muscles. It means they work harder, often against each other, in order to move or complete a task, and can become fatigued quickly
- slowness of movement (bradykinesia). If you experience this, tasks can take you longer to complete than they used to, leading to fatigue
- stress. Parkinson’s and its symptoms can cause stress at work or home and this can make fatigue worse, particularly true if stress builds up over a period of time
Fatigue | Parkinson’s UK (parkinsons.org.uk)
Primary Vs Secondary Fatigue
With secondary causes of fatigue, fatigue levels are influenced by other factors such as:
Whilst a person may be experiencing both primary and secondary fatigue, removing secondary causes will support management of primary. Therefore, it is important to consider patients holistically. Discussing sleep hygiene, requesting a medication review or referral to a dietician can be considered. As well as using assessments to whether factors such as apathy or depression are a factor: the PNS can review this and advise re appropriate medications.
Fatigue Management Techniques
Everyone is familiar with the feeling of being tired after exercise or a long period of concentration. Despite resting and a good night’s sleep, fatigue can be felt after minimal effort, is prolonged and limits your abilities to take part in activities of daily living. Fatigue can leave people feeling like they are unable to concentrate and unable to recall memories.
Fatigue is very common with neurological conditions and is a unique experience for each person. The time it takes to settle or improve depends on the condition or injury, and many other factors.
What can you do if you are experiencing fatigue?
- Recognise that fatigue is real and be kind to yourself. Take the time to explain to friends, family and colleagues the impact that fatigue is having. Fatigue is invisible and sometimes it can be misunderstood. Until someone experiences fatigue, it is hard to understand the impact and how debilitating it can be.
- Get a good night’s sleep. Fatigue can feel worse if your sleeping pattern is disrupted.
- Try relaxation techniques. Mindful meditation, aromatherapy, yoga, tai chi, reading, or any other activity which you find relaxing can help with fatigue as they promote good sleep patterns and reduce stress.
How to conserve your energy
The 3 P’s principle (Pace, Plan, Prioritise)
Pace – Pacing yourself can help you to have enough energy to complete an activity. You will recover quicker if you work on a task until you are tired rather than exhausted.
- Break up activities into smaller tasks and spread them out throughout the day.
- Have a rest during an activity.
- Plan rest breaks in between activities.
- Sit and rest wherever possible.
Plan – Have a think of the activities you usually do on a daily and weekly basis and plan for how you can spread these activities out. If you notice that a certain activity makes you feel breathless or tired, rather than do them all in one go, plan ahead and complete them throughout the day. You can think about changing the time that you would usually complete an activity. For example, if you find showering on a morning leaves you feeling fatigued, try taking a shower in the evening before going to bed.
- Gather together all the items you need before you begin a task.
- If you have an Occupational Therapist, speak to them about adapted equipment which are likely to make tasks easier. Ask them about any other support or advice which is available.
- Ask friends or family to help you do activities while they are around to help you.
Prioritise – Some activities of daily living are necessary, but others aren’t. Ask yourself the following questions to find out what tasks you are necessary.
- What do I need to do today? What do I want to do today?
- What can be done another day?
- What can I ask someone else to do for me?
Try to avoid the ‘boom and bust’ pattern of operating.
Sleep Hygiene
What is sleep hygiene?
Your bedroom environment and your habits (behaviours) during the day, as well as your habits before you go to bed, all play a role in how well you sleep. ‘Sleep hygiene’ is the term used to describe healthy habits that you can practice during the day to help you get a good night’s sleep.
Why is good sleep hygiene important?
Sleep is essential for your physical and mental wellbeing. It allows your body time to recharge and your mind to process information. Without enough quality sleep, our brains are unable to function properly.
Good sleep hygiene can help improve your sleep quality, which in turn can:
- improve your mood
- improve your concentration and memory
- prevent you from developing sleep disorders (such as insomnia)
- help you maintain a healthy weight
- lower your risk of developing serious health conditions (such as diabetes and heart disease)
- help your body fight off diseases
What are the signs of poor sleep hygiene?
If you have poor sleep hygiene, you may:
- find it difficult to fall asleep
- wake up several times during the night
- feel tired during the day
How can I improve my sleep hygiene?
We have included some simple lifestyle changes below. You can make these changes during the day and just before you go to bed to help improve your sleep hygiene, which will help you get the best possible night’s sleep.
- Keep regular sleep hours: going to bed and getting up at roughly the same time every day (including on weekends and free days) will help regulate your body clock and will train your body to rest and remain alert at certain times of the day.
- Create a restful bedroom environment: you can do this by:
- keeping the room temperature at a comfortable level (a very warm room is more likely to disrupt your sleep)
- keeping the room as dark as possible
- keeping the room as quiet as possible or using earplugs
- Only use your bedroom for sleep, sex and getting dressed: avoid watching television, listening to the radio or reading in bed. This will help your brain to recognise your bed as a place for sleeping.
- Stop using electronic devices before going to bed: this includes computers, smartphones and televisions, as they can all stimulate your brain for several hours after use, making falling asleep difficult.
- Avoid stimulants after lunch: caffeine can take up to six hours to wear off, so avoid anything containing caffeine after 2pm. This includes coffee, tea, energy drinks and chocolate. Nicotine is a stimulant and will keep you awake, so avoid smoking before going to bed. Alcohol may make you feel drowsy, but it does not improve sleep quality and will make you need the toilet more often than usual, which will disrupt your sleep. Avoid drinking alcohol before going to bed and try not to rely on it to help you fall asleep.
- Eat a light meal before going to bed: going to bed too full can force your digestive system to keep working when it should be resting. Likewise, going to bed hungry can also disturb your sleep.
- Exercise regularly during the day: exercising during the day can help you have a better night’s sleep. However, vigorous exercise within three hours of going to bed may delay your sleep. Try doing a relaxing exercise before going to bed to help you sleep, such as yoga.
- Get regular exposure to natural light: morning and early afternoon light exposure will help you to maintain a healthy sleep-wake cycle. Too much light exposure in the evening can prevent you from feeling sleepy.
- Create a relaxing bedtime routine: when you are stressed or anxious, your body produces more cortisol (the stress hormone). Give yourself one to one and a half hours to wind down before going to sleep. Try meditating or having a warm bath before going to bed.
- Limit or avoid taking naps during the day: staying awake during the day will make you more likely to fall asleep at night. Taking a nap late afternoon or in the evening is likely to affect the quality of your night-time sleep. If you do take a daytime nap, this should be no more than 30 minutes.
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