Managing Fatigue in Parkinson’s
Do you or a loved one with Parkinson’s disease (PD) feel physically or mentally exhausted? This could be fatigue — a feeling of deep tiredness that has no apparent explanation and does not improve with rest. About half of people with Parkinson’s disease report that fatigue is a major problem, and a third say it is their single most disabling symptom. Although many of us use the terms fatigue and sleepiness interchangeably, they are considered to be separate challenges. Sleepy people may fall asleep at abnormal times during the day; whereas people with fatigue need to rest but do not generally drop off to sleep.
What is fatigue in Parkinson’s?
Fatigue has been described as an overwhelming sense of tiredness, a lack of energy and a feeling of exhaustion. This can be a physical, mental or an emotional feeling. Anybody can feel fatigued when they are working too hard, or when pressures at work or home cause stress. Fatigue can also be a symptom of an illness, like Parkinson’s disease (PD). At this time, no specific mechanism has been shown to cause fatigue in PD. Sometimes it can be difficult to determine what may be causing it. Talk to your doctor or neurologist if you are experiencing fatigue so they can help you decipher its cause.
For some people, fatigue can be very difficult to live with, while others can manage the symptom well. What’s more is that people who are newly diagnosed with PD can be just as likely to experience fatigue as those who have had the condition for some time – in fact, it may be one of the earliest symptoms you experience.
Can fatigue be exacerbated by sleep disturbances?
Yes. Many people with Parkinson’s can experience problems with sleeping at night, which can often leave you feeling tired and lethargic during the day. You may wake up during the night because of tremor or stiffness, or because you are having difficulty turning over in bed. You may also be waking up in the night because you need to go to the bathroom.
If you are having any of these problems, you may not feel very well rested in the morning, and could experience difficulty with completing tasks throughout the day. While night-time problems can contribute to excessive daytime sleepiness, frequent napping during the day can also make sleeping at night more difficult.
It is important that you find the reasons for sleep and night-time problems, because many of these can be treated and may help you feel better during the day. You could try to develop good sleeping habits by having a regular bedtime and sleeping hours. Relaxing before you go to bed, by doing things like taking a warm bath, can also help. Stimulants such as alcohol, tobacco and caffeine should be avoided in the evenings.
What can I do about fatigue?
Some of the main causes of fatigue, such as sleep disturbance, depression or Parkinson’s symptoms, can be treated medically. But there are a number of things you can do yourself to try to avoid fatigue or help minimize it.
Work with your healthcare professional
To get help, a complete health history and physical exam is first necessary to rule out non-Parkinson causes Sometimes problems not associated with PD, such as anemia, may be found. If you are experiencing fatigue, ask yourself the following questions and record them in a notebook. Then, bring this information to your next doctor’s appointment and share it with your doctor: • When do I feel fatigued?
- How long do my feelings of fatigue last each day?
- Does my fatigue fluctuate with my symptoms?
- Does my fatigue fluctuate with the time that I take my medications?
- On a scale of one to ten, how fatigued am I in the morning, around noon and in the afternoon?
The answers to these questions can help you and your doctor work together to identify possible causes of the fatigue you are experiencing. If necessary, Parkinson’s medications can be adjusted.
At work
If you are still working, it may not be easy to rearrange your daily tasks. Instead, try to take regular, short breaks. This can help you work better and avoid fatigue building up. A break can be something as simple as making a cup of tea, having a chat with a colleague or sitting back for a few moments with your eyes closed.
Around the home
If you live with someone, it may be useful to divide household tasks, so that you do the jobs you can manage more easily. If you live alone, it may be helpful to hire someone or ask a friend to help with cleaning or preparing meals.
Exercise
While this may seem like a broken record, exercise is an important tool to manage Parkinson’s symptoms. Try to get regular exercise throughout your week. This may seem difficult at first, but your stamina will build up over time. Mental exercise is also important, so try and stay involved with any hobbies and interests. If you have time during the day, try to do a variety of activities, as boredom can also lead to fatigue.
Diet
Eating a healthy, balanced diet is important, so try to make sure you are eating the right foods. Some people find that a small snack every couple of hours provides them with a constant supply of glucose, which is used for energy. It is also important to try to avoid constipation (when stools are hard and difficult to pass), as this can make you feel sluggish.
Daily routine
Occasionally, you may feel fatigued after a large midday meal. A short nap may be particularly helpful at this time and may reduce the sense of fatigue. You could also try having a smaller, lighter meal at lunchtimes.
Above all, know your limitations. Try to perform as much of your daily routine as you can by yourself, but take a rest or get help when you think you need it. If you are feeling fatigued, it may not help to try to force too much into one time period. You may find that even after a good night’s rest you are feeling more tired and less energetic than usual. This could be due to having overworked the day before, or due to the way your condition fluctuates. Whatever the cause, keep in mind that you will have days when you feel tired and days when you feel better than usual.
Sources
National Parkinson Foundation. (n.d.) Fatigue and Parkinson’s Disease. Retrieved from http://www.parkinson.org/sites/default/files/fatigue-and-parkinsons.pdf
Parkinson’s UK. (January 2014). Fatigue and Parkinson’s. Retrieved from https://www.parkinsons.org.uk/sites/default/files/publications/download/english/fs72_fatigueandparkinsons.pdf
This content was published in the January 2017 edition of our monthly support group newsletter, GroupLink. The content was accurate as of this publication date.