In mid-June, the PMD Alliance hosted a webinar on fatigue in Parkinson’s Disease (PD).  The webinar featured movement disorder specialist Dr. Joseph Friedman, who discussed the difference between fatigue and sleepiness, the kinds of fatigue, and how to measure and treat it.  Fifty percent of people with PD will rate fatigue as one of their worst symptoms, and one-third of PD patients rate fatigue as their single worst symptom. It is the most important reason cited for medical disability insurance claims by PD patients in the US. 

Dr. Friedman offers this quotation of a researcher’s description of fatigue: “fatigue is a sense of tiredness, lack of energy, or need for increased effort, often perceived as overwhelming, pervasive, and disabling” (Di Vico et al.).  Fatigue is different from sleepiness in that it doesn’t get better with a nap or more sleep. Fatigue may improve by sitting or lying down. 

There are multiple kinds of fatigue:

• Emotional fatigue happens when someone is coping with stress and can make it difficult to be motivated to do anything. 
• Cognitive fatigue is similar to emotional fatigue and results in difficulty of concentration. 
• Physical fatigue looks normal, but someone doesn’t have the energy to exercise, socialize, or do chores. 
• Muscle fatigue can be measured by the loss of strength. 

The speaker explained that it is hard to quantify fatigue because there are no objective measures. Subjective measures include changes in motivation, activity, and willingness to take on new tasks.  Everyone feels fatigued sometimes, but it is pathological and abnormal when it is excessive, feels differently than the past, and interferes in your life in a way that it doesn’t for others.  

Fatigue is common in the general population (5-10%).  It can be seen in other disorders such as depression, anxiety, apathy, heart and lung disease. 

Some treatments for fatigue are:

• Reducing medications
• Having good sleep hygiene
• Increasing exercise
• Stimulant medications
• Treating contributors to fatigue such as depression and anxiety

For more information on fatigue please see this Stanford Parkinson’s Community Outreach webpage: 

Fatigue

For a recording of this webinar, please see this PMD Alliance YouTube webpage here.

See below for notes on the June 16th webinar. 

Regards, 

– Joëlle Kuehn

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“Fatigue in PD” – Webinar Notes

Speaker: Joseph Friedman, MD, movement disorder specialist, chief of movement disorder program, Butlers, Hospital, Rhode Island

Webinar Host: PMD Alliance

Webinar Date: June 16, 2021

Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach

Interesting facts:

• Fatigue is present in half of all PD patients, and has a major impact on quality of life
• Fatigue is the single most important reason cited for medical disability insurance claims by PD patients in the US
• Patients suffer from both physical and mental fatigue

What is fatigue?

• “A sense of tiredness, lack of energy, or need for increased effort, often perceived as overwhelming, pervasive, and disabling” (Di Vico et al.)
• Synonyms: tiredness, weariness, exhaustion, lassitude, weakness
• Tricky because tired could mean both sleepy and fatigue

Fatigue vs. sleepiness:

• When you are sleepy, you take a nap and feel less sleepy, more alert and less tired
  • Ex. sleepiness from lack of sleep because have to wake up to use the restroom
  • PD patients often have sleep problems because they have difficulty getting comfortable
  • PD patients might be awakened by their tremors
  • PD patients may have an increased rate of developing sleep apnea.  Sleep apnea brings people to lighter sleep which results in feeling less rested and being more prone to awakening
  • Medication also increases likelihood of sleepiness
    • Levodopa makes people sleepy
    • Dopamine agonists increase sleepiness as well
    • Anxiety or depression drugs may cause sleepiness   
• Fatigue is a sense of lacking in energy to do activities, resting is sitting or laying down, but not taking a nap
• People may be sleepy, or fatigued, or both
• Both feel “tired” and may have difficulty concentrating or doing anything.  Less motivated or interested in doing things.

Kinds of fatigue:

• Hard to measure
• Objective muscle fatigue.  Can be measured in terms of actual physical data
• Mental fatigue:
  • Emotional and cognitive fatigue
  • Emotional fatigue:
    • Have been coping with some important stress 
    • Child who is ill or needy in some way
    • Person themselves is facing changes in lifestyle
    • Financial concerns
    • Dealing with the stressors can be fatiguing and make it harder for you to be motivated and do anything
  • Cognitive fatigue: 
    • Similar to emotional fatigue
    • Trouble learning difficult things and it results in difficulty of concentration
• Non-objective physical fatigue:
  • Not like muscle fatigue where you can measure the loss of strength in the muscle
  • Look normal, but don’t have energy to do things
  • Don’t have the energy to exercise, socialize, do chores
  • Can make people feel depressed
  • Easy fatigue (fatigability)
    • May not feel particularly tired, but have learned that their energy runs low very quickly (like having a faulty battery)
    • This is what people with PD mostly suffer from
    • Have a small amount of energy, recharging takes a long time

How to measure fatigue?

• Hard to measure fatigue because don’t have objective measures
• With subjective measures
  • If you ask someone to rate their pain out of 10, someone’s 8 out of 10 may be different than other’s 8 out of 10
  • Patient may not notice as much improvement as caregiver, so it may vary, but can measure improvement by changes in how the person behaves
• Willingness to take on new tasks or responsibilities 
• With a change in motivation
• With measures of output, physical or mental
  • How active people are
  • How often they exercise, travel outside the house, reading books more, engaging with grandchildren more, etc.
• We measure fatigue in indirect way because we don’t have a direct way to measure

Is fatigue physiological or psychological?

• Both
• We have no “biomarker” for fatigue
  • Biomarker is an objectively measurable change in a person that is a substitute or indicator of a physiological process
  • Ex. how much dopamine you have and how much slowness/tremors you have
• There have been no physiological indicators of fatigue
  • Don’t have such a “marker” for psychological factors either 
  • Can be physiological because it is so common:
    • 50% of people with PD will rate fatigue as one of their worst symptoms
    • ⅓ of PD patients rate fatigue as their single worst symptom
    • Given this is so prevalent, it seems like it is a cross-cultural phenomenon and more likely physiological 
    • Many people diagnosed with PD, at the time of diagnosis would report that they had been fatigued for years before motor symptoms developed

When is fatigue pathological (abnormal)?  We all feel fatigued/depressed sometimes, but it is pathological when: 

• Fatigue is “excessive” compared to “normal” or to a baseline
• Fatigue feels different than it used to.  Everyone is used to feeling tired, but fatigue is worse than it used to be and feels differently   
• It interferes in your life in a way that it doesn’t for others, and that it didn’t for you before.  Everyone feels fatigue as they age, but compare yourself to others in your age group and see if it is different

Relationship between fatigue and other disorders:

• 5-10% of seemingly normal people will bring fatigue as complaint to primary care physician
• Fatigue seen in number of disorders:
  • Depression/Anxiety:  Fatigue is a common diagnostic factor
  • Apathy:
    • Lack of emotional interest/variation and a reduction in ability to feel happy/sad
    • Frequently not motivated
  • Motivation:  People who are not motivated frequently complain of fatigue as a reason
  • Other disorders: 
    • Age related illness
    • Heart disease and lung diseases

Facts about fatigue:

• Fatigue is a common symptom in all disorders (except for one – mania)
• It is common in PD and may predate onset of motor changes
• There are no known distinguishing features between PD fatigue and fatigue from other disorders the patient may also have (i.e. heart failure, diabetes, anemia, chronic pain of all types, depression, etc.)
• We have no objective measures of fatigue
• Fatigue occurs in PD in all cultures, with and without treatment
• Fatigue reduces quality of life    

How to treat fatigue:

• Important to recognize fatigue as a symptom of PD because:
  • Fatigue is not a moral failing
  • We don’t blame the cancer patient for fatigue, so we shouldn’t blame those with PD with fatigue
  • It is a physiological problem whos pathophysiology remains unexplained 
• Try to come to terms with your illness, accommodate that you have limitations
  • Fatigue is a part of PD, just like tremor, slowness, and soft voice
  • It is not your fault
• Reduce medications (sleep meds, some anxiety meds) that may contribute to fatigue
• Have a regular sleep schedule, with good sleep
• Increase exercise, but gradually to increase endurance, which will hopefully turn into increased energy
• The speaker uses stimulant medications, although there isn’t any data to support it, but at low doses it is safe for old people
  • Don’t use for certain people who have heart disease
• Treat whatever may be contributing, like depression, anxiety, and pain

Question & Answer:

Question:  Should people that are experiencing significant fatigue issues have sleep studies done?

Answer: It depends on the situation. It depends on how well you, your caregiver, and the doctor can recognize the sleep disorder.

Question: Anything regarding diet that could help fatigue?

Answer: Avoiding alcohol in the evening is probably the number one thing. Not eating much at night after dinner. Stay off caffeinated beverages in the afternoon. Try to maintain good sleep hygiene.

Question: I am able to get up fine during the day, but throughout the day I run out of steam. Later in the afternoon I fall asleep while watching TV. I’m getting 8-9 hours of sleep. Is this fatigue or sleepiness?

Answer: From that description I’d say it’s sleepiness. It might be related to medications, or that the 8-9 hours of sleep aren’t high quality sleep. A sleep study may be helpful.

Question: My husband spends the majority of the day with their eyes closed and their head down but it isn’t napping. Is that fatigue or an eye problem?

Answer: I would ask the husband. That is something that I’ve heard, and in some cases the person really is asleep, but you can tell because you can ask them if they’re awake and if it looks like you’re waking them up (startle response), they’re asleep. You might be able to tell by the breathing rate. For patients who are not asleep but keep them closed, they are usually apathetic or depressed. The answer might come from the doctor interviewing the patient to explain what is going on during these spells, and the spouse asking the patient at the time “What are you thinking?” etc.

Question: You mentioned that people can feel fatigue before the onset of motor symptoms, so is fatigue potentially a prodromal symptom?

Answer: There has been a lot of focus on people trying to figure out if there are people who are at a greater risk of PD. Other than the one exception of REM sleep behavior disorder, the other prodromal features are so common in the general population that I don’t think they’re terribly useful.

Question: I get muscle fatigue in my left forearm from tremors. If exercise is helpful for fatigue but you have muscle fatigue, what do you do?

Answer: It’s a common complaint. The treatment for that is to treat the PD motor symptoms. Some people use botox to treat tremor, which would relieve the discomfort from tight muscles.