Find Your People Here
You dont have to go through this alone. Find your team through MyParkinsonsTeamthe social network for some 81,000 people living with Parkinsons and their loved ones. Here, you can meet others who know exactly how you feel, ask them questions, and share tips. More than 2,800 members on MyParkinsonsTeam report fatigue as a serious symptom.
Have you experienced fatigue with Parkinsons? Did your doctors recommend strategies for fighting or preventing it? Share your experience and tips in the comments below or by posting on MyParkinsonsTeam.
Parkinsons Disease Education Consortium 2018 Research Program Overview
This work was undertaken as part of the Michael J Fox Foundations Parkinsons Disease Education Consortium 2018 research program. The PDEC objective relevant to the present analysis was to understand how individuals with PD experience fatigue.
The PDEC 2018 research program undertook a mixed-methods approach that involved three phases , each of which built on prior phases. Initial phases were aimed at in-depth analysis in a small sample, before expanding to a larger cohort of people with PD. Phase 1 was an online journaling activity, in which an online moderator interacted with individuals with PD via a series of structured activities. Phase 2 involved semi-structured telephone interviews with a different set of participants. Phase 3 involved deployment of a survey to the Fox Insight study cohort. Each of these phases is detailed further below. Participants provided informed consent to each phase separately.
Fig.1
Flow chart of study recruitment phases.
Insights Into Fatigue From Other Disorders
Although perceived fatigue is probably similar among different illnesses, there may be disease-specific differences. Both similarities and differences may provide insights into fatigue pathophysiology. Similarities in fatigue would be compatible with a hypothesis of shared mechanisms, and thus the possibility of similar interventions. The high prevalence of fatigue in medical and psychiatric disorders points either to some very generalized mechanisms or a limitation in the brains ability to distinguish perceptions. We limited our review of other disorders with prominent fatigue, but excluded chronic fatigue syndrome because of its frequent association with psychiatric disorders such as personality disorders and post-traumatic stress disorder that might confound physiological interpretations.
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Understanding The Lexicon Of Fatigue In Parkinsons Disease
Article type: Research Article
Authors: Mantri, Snehaa * | Klawson, Emilyb | Albert, Stevenb | Nabieva, Karinac | Lepore, Madelined | Kahl, Stephene | Daeschler, Margaretf | Mamikonyan, Eugeniag | Kopil, Catherinef | c | Chahine, Lana M.d
Affiliations: Department of Neurology, Duke University, Durham, NC, USA | Department of Behavioral and Community Health Sciences, University of Pittsburgh, Pittsburgh, PA, USA | The Edmond J Safra Program in Parkinsons disease, Toronto Western Hospital, University of Toronto, Toronto, Ontario, USA | Department of Neurology, University of Pittsburgh, Pittsburgh, PA, USA | Tuck School of Business, Dartmouth College, Hanover, NH, USA | Michael J. Fox Foundation, New York, NY, USA | Department of Psychiatry, University of Pennsylvania, Philadelphia, PA, USA
Correspondence: Correspondence to: Sneha Mantri, MD, MS, 932 Morreene Rd, DUMC 3333, Durham NC 27705, USA. Tel.: +1 919 684 1947 E-mail: .
Keywords: Fatigue, Parkinsons disease, qualitative research
DOI: 10.3233/JPD-202029
Journal: Journal of Parkinson’s Disease, vol. 10, no. 3, pp. 1185-1193, 2020
Abstract
Managing Fatigue And Parkinsons Disease
If you are living with Parkinsons disease , you might often feel run down, out of energy, or even a bone-deep kind of tired that isnt relieved with rest. Those feelings of intense tiredness are known as fatigue a symptom that affects at least 50 percent of those with PD.
Many MyParkinsonsTeam members experience fatigue. I didnt know it was caused by PD. I just thought I was getting lazy, said one self-proclaimed chronic napper.
Im getting a better understanding of fatigue reading other PD patients stories and knowing I’m more normal than I thought, wrote another member, relieved.
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Clinical Measures Of Fatigue In Pd
A systematic critique of rating scales for diagnosis and severity of PD fatigue used pre-determined criteria for Recommended, Suggested, or Listed, depending on the quality of data. The FSS met the necessary criteria to be recommended for both diagnostic screening and severity measurement., The Multidimensional Fatigue Inventory was designated as recommended for rating fatigue severity, and may be more sensitive to change with interventions than the FSS. For diagnostic screening only, two other scales were recommended: Functional Assessment of Chronic Illness TherapyFatigue Scale and Parkinson Fatigue Scale . Since the MDS review article, the Modified Fatigue Impact Scale has been validated in a study involving 100 PD patients. This scale involves evaluation of cognitive as well as physical and social functioning.
Treatment For Fatigue In Parkinson’s Disease
At least one-third of people with Parkinson’s disease complain about fatigue. It is unclear what treatment is best to reduce fatigue in people with Parkinson’s disease.
We reviewed the medical literature up to April 2015, and found 11 studies that included a total of 1817 people. Nine studies investigated the effects of medication on fatigue. Two studies investigated the effects of exercise on fatigue. We found no studies that investigated the effect of cognitive-behavioural therapy.
We found that doxepin , a drug to treat depression, may reduce fatigue. We found that rasagiline , an anti-Parkinson drug, reduced or slowed down the progression of physical fatigue. Most drugs were safe however, levodopa-carbidopa may cause nausea.
We found no evidence that exercise reduces fatigue in Parkinson’s disease.
Based on the current evidence, it is not clear what treatment is most effective to treat fatigue in people with Parkinson’s disease. Future studies should investigate the effect of cognitive-behavioural therapy on fatigue in people with Parkinson’s disease.
Factors contributing to subjective fatigue in people with idiopathic Parkinsons disease are not well known. This makes it difficult to manage fatigue effectively in PD.
To evaluate the effects of pharmacological and non-pharmacological interventions, compared to an inactive control intervention, on subjective fatigue in people with PD.
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The Impacts Of Fatigue On Those With Parkinsons
Fatigue in PD can be debilitating. This fatigue can take the form of physical exhaustion that makes you feel completely lacking in energy. This is described as the sort of exhaustion that makes moving nearly impossible. Its not just sleepiness its feeling weary, without enough energy to even get out of bed or off the couch. Woke up feeling fatigue, wrote one member, like I have to push myself to get going.
Another shared that their day would be much better if I didnt get so tired by noon. After noon, about all I can do is sit in the recliner or lay in the bed and sleep for a couple of hours.
Fatigue can also show up as crippling mental exhaustion. Mental fatigue makes concentrating nearly impossible and can result in an inability to remember things or follow simple directions. As members have shared, you may feel excessive daytime sleepiness no matter how much rest you get: I, too, suffer from chronic fatigue. I believe I could sleep for 24 hours and still be tired.
For some with PD, fatigue is a constant. Others, however, find that their fatigue comes and goes. One member shared that they are not always tired and lethargic, but sometimes, it hits me for a whole day. I have always had plenty of energy, and I am now perplexed with the ups and downs of PD conditions. I fall asleep often when sitting after eating, while watching TV, during quiet times, and generally doze when I used to not do it.
Physiology And Biomarkers For Fatigue In Pd
The physiology underlying fatigue symptoms in PD is unknown, whereas much is known about the mechanisms of motor fatigability. The only published study of physiological differences between fatigued and nonfatigued PD patients found no measurable differences in oxygen utilization during exercise, but some studies have suggested that exercising improves fatigue.,,, Whether fatigue fluctuates with motor fluctuations was looked at in one study. Subjects were assessed during their off, whereas all other studies used the subjects experience over a preceding time interval of weeks. Eighty-eight percent of their subjects were fatigued, and fatigue increased with motor ”off.” Too few subjects were nonfatigued to determine how often fatigue occurred only during motor ”off.” The physiological implications are unclear, as many other nonmotor symptoms also increased during the ”off” period.
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Fatigue In Parkinsons Disease
Fatigue is a common but under-recognized problem for people with Parkinsons disease . Fatigue can be defined as an unpleasant sensation of lacking energy, making the performance of routine activities, physical or mental, a strain. People with PD may experience physical fatigue, mental fatigue, or both. Fatigue in PD is not the same as the feeling you might get at the end of a hard days work. It is not necessarily something that goes away with rest. When people with PD are asked about fatigue, they use phrases such as, I feel run down, I am out of energy, I am unable to do anything, I cant get motivated.
Fatigue in Parkinsons Brochure
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Fatigue is common in PD
Fatigue and Depression
There is a large overlap between fatigue and other problems in PD, especially depression and sleep disorders. People with fatigue are more likely to be depressed and people who are depressed are more likely to be fatigued, but there is nonetheless a large group of PD patients who are fatigued but not depressed. Depression in PD typically responds to antidepressant treatment, and depression-related fatigue may improve with such treatment.
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Fatigue and Sleep disorders
Causes of Fatigue
Imaging Of Fatigue In Pd
Motor symptoms in PD result from nigrostriatal dopaminergic denervation, but dopaminergic dysfunction does not appear to be related to fatigue in PD. In the ELLDOPA cohort, 49 levodopa-naive PD patients with fatigue had similar –CIT striatal dopamine transporter uptake as 82 PD patients without fatigue. Another study showed no difference in 18F-dopa uptake between 10 fatigued PD subjects and 10 nonfatigued PD subjects.,
Serotonin transporter uptake has been reported to be reduced in chronic fatigue syndrome,, suggesting that nondopaminergic pathways may be involved in PD fatigue. Pavese et al. compared serotonergic transporter uptake ligand 11C-DASB) in seven PD subjects with fatigue and eight PD subjects without fatigue. Serotonin transporter binding in the caudate, putamen, ventral striatum, insula, and thalamus was decreased in the fatigued patients. The relationship of the cholinergic system to PD fatigue has not been investigated. The autonomic nervous system may also be involved in PD fatigue. One study found that pressor responses in norepinephrine and dobutamine infusion tests were greater and MIBG cardiac uptake was decreased in PD subjects with fatigue compared with those without fatigue.,
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Causes Of Fatigue In Parkinsons Disease
Many of the symptoms of PD, including slow movement, muscle stiffness, depression, and changes to sleep quality can cause or worsen the symptom of fatigue.
- Akinesia Fatigue may be caused by akinesia . People experiencing akinesia find it challenging to accomplish simple tasks, requiring significantly more energy to get through the daily activities.
- Muscle fatigue Many of the symptoms of PD that affect the muscles, like stiffness, cramping, tremor, and difficulty starting movement, put extra stress on the muscles, causing fatigue. In addition, some people with PD experience muscle atrophy, in which the muscles shrink and weaken due to lack of use. Muscle atrophy decreases a persons stamina and endurance, contributing to the sense of fatigue.
- Depression Depression is another common non-motor symptom of PD, occurring in approximately 40% of people with PD. Depression can cause fatigue, adding to a sense of low energy or lack of motivation.
- Sleep disturbance PD often causes changes in sleep cycles, which can add to a sense of fatigue during the day.
- Medications Some of the medications used to treat PD, including dopamine agonists, can cause fatigue as a side effect. Others may cause insomnia as a side effect, leading to daytime fatigue.1,2
Association Between Fatigue And Quality Of Life In Parkinsons Disease
To determine the relationship between the perception of fatigue and quality of life, a canonical correlation analysis was conducted using the fatigue scales as the criterion variables and quality of life measures as the predictor variables. The range of correlation within the fatigue scales was r=0.86 to 0.85 and r=0.74 to 0.82 among the quality of life variables. The highest correlated predictor variables was between the PDQ-39SI and NMSQ measures. Omission of either variable did not change the results these two variables were therefore retained. The multivariate analyses produced four discriminant functions, of which the first was significant, F=13.24, p=0.0005 based on Roys greatest-root test. The correlation between the two sets of variables was Rc=0.98, indicating a high degree of relationship between the predictor and criterion variables. The squared canonical correlation which represented the proportion of the variance in the canonical variate of the fatigue scales that can be explained by the canonical variate of the quality of life variables was 96%.
Table 1 Canonical loadings for the fatigue and quality of life in the Parkinson group
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Pragmatic Management Of Fatigue In Pd
Treatment approaches focused on fatigue in PD are faced with 2 main limitations: lack of clear insight into its pathophysiology and mechanisms, and probably its multifactorial nature . Therefore, as stated by Kluger and Friedman, contemporary treatment of fatigue in PD is limited to an empirical approach based on plausible hypotheses .
Working With Your Healthcare Provider To Manage Fatigue
If you are experiencing fatigue, ask yourself the following questions. Record the answers in a notebook or on your smartphone, and bring this information to your next doctors appointment.
When do I feel fatigued? How long do my feelings of fatigue last each day? Does my fatigue change with my PD symptoms? Does my fatigue change 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. To understand and address it, and to rule out non-Parkinsons causes, your healthcare provider will take a complete health history and do a physical exam. Sometimes problems not associated with PD, such as anemia, can explain the fatigue. If necessary, Parkinsons medications can be adjusted.
The Parkinsons Foundation is committed to better understanding how to help people with PD overcome Fatigue. In 2017, we provided funding to two researchers studying fatigue.
Hengyi Rao, Ph.D. at University of Pennsylvania is studying Multi-modal Neuroimaging of Fatigue in Parkinsons Disease.
Milton Biagioni, M.D. at New York University is studying Remotely Supervised Transcranial Direct Current Stimulation for At-home Treatment of Fatigue and Cognitive Slowing in Parkinsons Disease.
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What Causes Fatigue In Parkinson’s
The precise mechanisms that cause fatigue are unclear but research suggests that any neurological disorder which involves the basal ganglia area of the brain is likely to be associated with significant fatigue. This includes Parkinsons.
In some cases Parkinsons medication may be a factor, for example dopaminergic medications may affect sleep and so add to fatigue. Dosage and timing of medication may also affect energy levels.
Fatigue may be linked to other Parkinsons symptoms, for example depression. With depression there is usually also fatigue, as well as loss of motivation, a general lack of interest and difficulty in sleeping. It is important that these symptoms are recognised as they are very treatable, and overcoming them can reduce fatigue.
If you experience tremor, rigidity or dyskinesia your muscles will have to work harder in order to carry out simple movements or tasks which can mean muscles fatigue more quickly and easily. Slowness of movement may also increase fatigue by making activities and tasks more prolonged and effortful.
You may have sleep problems and poor quality sleep tends to lead to excessive day-time sleepiness and a tendency to nap. Although sleepiness is a separate symptom to fatigue, it clearly adds to the problem and fatigue is hard to overcome if you are sleepy.
Ways To Help With Fatigue In Parkinsons Disease
Fatigue is a common, frustrating symptom of Parkinsons disease. It can feel both physical due to lack of sleep, or mental due to apathy or depression. Pain from symptoms such as rigidity can make falling asleep more difficult, or insomnia can inhibit sleep altogether.
These things all add up to tiredness and fatigue during the day, but making changes to your routine, physical activities or medication may help you feel more energized. Here are seven different ways to help you battle your fatigue and have more energy throughout the day.
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Extraction Of Region Of Interest Data
To extract region of interest data we used a standard object map in MNI space. The standard object map contained regions defined for caudate nucleus, putamen, ventral striatum, thalamus and median raphe. These regions of interest had been freehand-traced using ANALYZE 8.1 software onto the single subject MRI in MNI space available in SPM. The same standard object map was applied to each spatially normalized image of 18F-dopa Ki or 11C-DASB BPND and corresponding ADD images. Visual inspection of each plane for both images was made to ensure correct placement of the object regions over the correspondent structures. After applying target regions to structures, 18F-dopa Ki and 11C-DASB BPND values were quantified using ANALYZE 8.1. 18F-dopa Ki and 11C-DASB BPND values obtained from the different regions of interest were averaged over both hemispheres for statistical analysis.