How to Cope with Disabling Fatigue in Parkinson's Disease

Symptoms and Treatment Options for Parkinson's Fatigue.

Tired woman with Parkinson disease laying on bed with eyes closed
How can you cope with the fatigue of Parkinson's disease?. Credit: Hero Images / Getty Images

For many people with Parkinson's disease, fatigue is just as disabling and unpleasant a symptom as the motor slowing or the trembling.

Fatigue undermines all kinds of daily activities and rehabilitation programs. It feeds into our emotional reactions to Parkinson's symptoms and makes them all the harder to bear. It undermines our ability to cope with the challenges the condition presents to us each day, and makes it more difficult to connect with others.

Therefore, fatigue sometimes can increase our social isolation as it saps us of the energy we need to step out of the door and to interact with others.

If your doctor has not asked you about your level of fatigue, but you have symptoms (or just have questions about it), please bring it up.

Fatigue in Parkinson's: A Major Symptom

Here are the facts about fatigue in Parkinson's disease:

  • It tends to develop early in the disease and, if untreated, gets worse over time.
  • It is associated with reduced physical activity and poorer quality of life.
  • It can make Parkinson's and depression feel worse.
  • It is not due to lack of sleep, though it can be associated with sleep problems.
  • It often influences mental attention, making it harder to concentrate and to focus one’s attention.
  • It is unknown at this time if fatigue is more prevalent in men or women with Parkinson's.
  • One third of Parkinson's patients consider fatigue their single most disabling symptom, worse than the motor symptoms of the condition.
  • Fifty-eight percent of Parkinson's patients consider fatigue to be one of their three most disabling symptoms

How Does the Fatigue Make You Feel? - Symptoms

Fatigue is typically experienced as a state of being tired, weary, exhausted and without energy. Some people say they feel like they are walking underwater or through molasses—everything is an effort and exhausting.

Although fatigue can make depression worse, it is not the same as depression. You can have fatigue without depression, and most people with fatigue are not sad or self-destructive.

Similarly, fatigue is not the same as excessive daytime sleepiness. Although fatigue makes daytime sleepiness worse and harder to bear, you can have daytime sleepiness but not have fatigue. You also can experience the need for and urge to sleep, but not feel like you are walking underwater or through a field of molasses! Exhaustion and weariness are not the same as sleepiness.

Diagnosing Your Fatigue

If you are feeling weary and exhausted all the time and you mention this problem to your doctor, she may ask you to fill out a questionnaire to assess your symptoms. In addition, she may perform some special tests on you. For example:

  • Subjective mental and physical fatigue are evaluated using self-report questionnaires such as the Multidimensional Fatigue Inventory.
  • "Physical fatigability" can be measured by observing your endurance levels when performing physical exercise.
  • "Mental fatigability" is evaluated by measuring attention over time using an evaluation tool called the Attention Network Test. In this test, you will be asked to press a button whenever you see a certain "stimulus" or icon among a group of other icons on a computer screen. People with fatigue show a particular pattern of slowed button presses.

Of course, special tests aren't necessarily needed to know if you are fatigued. It may even seem silly to you to fill out questionaires when you know your don't have the energy you once had. These tests, however, can be helpful as a way to follow your progress or to have a way to visualize even subtle improvements as you work out a treatment approach with your doctor.

Steps You Can Take to Reduce Fatigue

If you are feeling fatigued and exhausted all the time, what can you do about it?

First and most importantly, speak to your doctor about how much the fatigue disturbs you. Does it undermine your daily activities? Does it make it more difficult to attend clinic visits or rehabilitation appointments? Does it feed into your emotional life? Does it undermine your coping ability? Once you speak to your doctor about your fatigue, your doctor might also recommend the following steps:

  • Engage in regular physical exercise, including the use of weights to increase muscle strength. Studies show that physical exercise combats both physical and mental fatigue.
  • Consider taking anti-depressant medication. Although fatigue is not caused by depression, depression can worsen fatigue (and vice versa). Treating depression if it is present might allow you to overcome fatigue with exercise or some other treatment.
  • Consider trying stimulants like Ritalin (methylphenidate), normally prescribed for attention deficit-hyperactivity disorder or Provigil (modafinil), prescribed for sleep apnea, as an adjunct for depression and as a palliative treatment in end of life care. Some doctors have reported that these drugs may help certain Parkinson's patients.

A Pep Talk on Coping with Fatigue With Parkinson's Disease

Getting started on a physical exercise program may feel overwhelming, but it can make a difference. You may have to force yourself to begin, but start somewhere. Often times people find the increased energy that may come about with exercise helps to reinforce an exercise program once started. Do you have someone you can exercise with? Many people find that having to be accountable to another on those days when you just want to skip your exercise can be very helpful.

That said, fatigue is nearly universal with Parkinson's disease, and at the present time, most people will continue to cope with some tiredness. You may want to think about some of the tried and true measures that have helped people with a number of conditions tolerate tiredness just a little more easily.

  • Prioritize - Some people find it helpful to spell out what is most important to accomplish during a day and then rank those items from most to least important. If you've at least crossed off the most important tasks, you'll likely feel better than if you had only accomplished a few less important tasks.
  • Plan ahead - When possible, plan ahead knowing that you can't do as much in a day as you once did.
  • Delegate - Delegating tasks is easier said than done. We don't want to burden others, and we like to be in charge. Yet there are often people who would be happy to take on a task or two for us. Take a moment to practice saying "yes" to offers of help.
  • Organize - The gurus of organization tell us that being organized both decreases stress and saves time. Is there a way in which you can organize your life so that the flow of your tasks is easier?
  • Pace yourself - Try to do your most ambitious tasks at the time of day when you feel most energetic.
  • Consider joining a support group - Many people with Parkinson's disease find traveling to a support group too difficult. Yet you probably have a computer nearby. There are many wonderful Parkinson's disease communities only a click away. Certainly joining a Parkinson's disease community is not going to magically take away your fatigue. But finding out that there are others just like you who are coping with the same obstacles can lessen the stress of wishing you had your old energy level back.

Sources:

Elbers, R., Verhoef, J., van Wegen, E., Berendse, H., and G. Kwakkel. Interventions for Fatigue in Parkinson’s Disease. Cochrane Database of Systematic Reviews. 2015. 10:CD010925.

Friedman, J. Fatigue in Parkinson’s Disease Patients. Current Treatment Options in Neurology. 2009. 11(3):186-90.

Lou, J. Fatigue in Parkinson’s Disease and Potential Interventions. NeuroRehabilitation. 2015. 25-34.

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