Fatigue: The Silent Symptom Of Parkinsons Disease
A 2013 survey by the Parkinsons disease Foundation identified fatigue as the most pressing need for the Parkinsons research community.
While tremors, muscle stiffness, and irregular gait are the symptoms most associated with Parkinsons disease, 50% of PD patients experience severe fatigue and a third say it is their single most debilitating symptom. Fatigue is the most significant reason cited for medical disability insurance claims by PD patients in the United States. Despite this overwhelming evidence, neurologists tend not to recognize fatigue as a prominent concern of PD patients.
Two studies in newly diagnosed Parkinsons patients reported fatigue to be a clinically relevant problem even when motor symptoms were minimal. These studies identified fatigue as a pre-motor symptom, appearing well before motor symptoms become obvious. Parkinsons patients describe their fatigue as different than any tiredness they had experienced before their diagnosis. Unlike fatigue in the general public, PD fatigue often improves with exercise.
Causes of PD Fatigue
Depression, sleep disturbances, and medications may also contribute to or cause fatigue. However, Dr. Joseph Friedman, Professor and Chief of the Division of Movement Disorders at the Warren Alpert Medical School of Brown University, points out that while fatigue is an early symptom and may be associated with depression, most PD patients with fatigue are not depressed.
Treatment Approaches
Triggers And Alleviating Factors For Fatigue In Parkinsons Disease
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Roles Conceptualization, Data curation, Formal analysis, Writing original draft, Writing review & editing
Affiliation Department of Neurology, University of Pittsburgh, Pittsburgh, PA, United States of America
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Roles Conceptualization, Data curation, Formal analysis, Writing review & editing
Affiliation Department of Neurology, University of Pittsburgh, Pittsburgh, PA, United States of America
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Roles Conceptualization, Writing review & editing
Affiliation Department of Neurology, Duke University, Durham, NC, United States of America
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Roles Conceptualization, Writing review & editing
Affiliation Graduate School of Public Health, University of Pittsburgh, Pittsburgh, PA, United States of America
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Roles Conceptualization, Project administration, Writing review & editing
Affiliation Columbia University School of Social Work, New York, NY, United States of America
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Roles Conceptualization, Funding acquisition, Project administration, Writing review & editing
Affiliation The Michael J. Fox Foundation for Parkinsons Research, New York, NY, United States of America
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Roles Conceptualization, Writing review & editing
Affiliation Department of Neurology, University of Toronto, Toronto, Ontario, Canada
The Relationship Between Parkinsons Disease And Sleep
Its unclear whether poor sleep causes parkinsonian symptoms to worsen or whether worsening parkinsonian symptoms cause poor sleep. In many cases its likely a case of bidirectionality, with each one exacerbating the other.
Fragmented sleep and sleep deprivation appear to leave the brain more vulnerable to oxidative stress, which has been tied to the development of Parkinsons disease. Parkinsons disease is not usually diagnosed until individuals have developed sufficient motor symptoms, by which time a significant portion of brain cells have already been damaged. If poor sleep quality or having sleep disorders foreshadows the development of parkinsonian symptoms, these could be useful in early diagnosis of the disease.
More research is needed to clarify the multifaceted relationship between Parkinsons disease and sleep. A better understanding of this connection may offer medical experts the unique opportunity to screen at-risk individuals and perhaps delay the onset of the disease.
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Study Sample And Assessments
Phase 1 and Phase 2 Sample Recruitment: Fox Trial Finder was used to identify individuals for this phase of the study. As previously described , FTF is a database of research volunteers. Individuals enrolled in FTF were sent an email invitation to participate in a study of fatigue in PD. The screening questionnaire included a question on dopamine agonist use, the Parkinson Fatigue Scale , Epworth Sleepiness Scale , and the Geriatric Depression Scale-15 item . In an effort to study primary fatigue participants self-reporting use of a dopamine agonist or with ESS> 10 or GDS> 5 were excluded.
Phase 1 Activities: Online journaling occurred for 1 hour per day over 3 days with a pilot sample of 12 participants . The online journaling phase consisted of interactive activities including responding to pictures and graphics and completing free-text responses to prompts provided by the research moderator . Prompts are included in the Appendix. The data collected from phase 1 were informally analyzed by the study team to define dimensions of fatigue important to patients and to inform data collection in other phases.
Assessments in Phase 3, including those administered as part of Fox Insight study as well as additional questionnaires/surveys collected as part of the PDEC 2018 sub-study, that were considered in this analysis are as follows:
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S 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 healthcare provider 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 practitioner about your fatigue, your medical professional 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 . Treating depression if it is present might allow you to overcome fatigue with exercise or some other treatment.
- Consider trying stimulants like Ritalin , normally prescribed for attention deficit-hyperactivity disorder or Provigil , prescribed for sleep apnea, as an adjunct for depression and as a palliative treatment in end of life care. Some healthcare providers have reported that these drugs may help certain Parkinson’s patients.
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Who Does It Affect
The risk of developing Parkinsons disease naturally increases with age, and the average age at which it starts is 60 years old. Its slightly more common in men or people designated male at birth than in women or people designated female at birth .
While Parkinsons disease is usually age-related, it can happen in adults as young as 20 .
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.
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How Can I Help Myself
The general rule is to keep as mentally and physically active as possible. The following suggestions may be helpful:
Daily activities:
- Plan your most vigorous activities around when your medication is most effective. You may find keeping a diary to track your symptoms and medication helps with timing when you are likely to be more mobile and energetic.
- Learn how to pace yourself, taking regular short rests and periods in which to relax throughout the day.
- If tasks are complicated or likely to take time, break them down into smaller stages so that you can rest between each stage. Share tasks if you live with someone and make use of labour saving devices such as a dishwasher or microwave.
- Recognise your limitations, identify the priorities of the day and get to know your energy reserves.
- Plan your major activities in advance and ensure that you have time for recovery afterwards. For instance, if you have a big social function such as a wedding, rest more in the days leading up to the event and also plan to have a few restful days afterwards.
Work:
- if you work, talk with your employer to see if you can take regular short breaks, even if its only to make a drink or talk with colleagues
Diet and exercise:
Content last reviewed: May 2018
General wellbeing:
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How Is It Diagnosed
Diagnosing Parkinson’s disease is mostly a clinical process, meaning it relies heavily on a healthcare provider examining your symptoms, asking you questions and reviewing your medical history. Some diagnostic and lab tests are possible, but these are usually needed to rule out other conditions or certain causes. However, most lab tests aren’t necessary unless you don’t respond to treatment for Parkinson’s disease, which can indicate you have another condition.
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Remember Your Mental Health
Depression and anxiety can lead to fatigue. These mental health challenges can happen more often in PD because of the disease itself and its effect on your life. Mental health is just as important as physical health. If you have looked at other reasons for your fatigue and are still struggling, consider seeing a mental health professional. Your doctor can help.4
You might have days where you struggle more with fatigue. Listen to your body and rest when you need to. However, keeping active and moving is essential to combating long-term fatigue related to PD. Juggling fatigue and movement problems can be challenging when you need to exercise.2,4
Talk to your doctor about how you can balance activity with rest to live an active, productive lifestyle with PD.2,4
Treatment For Fatigue In Parkinsons Disease
At least one-third of people with Parkinsons disease complain about fatigue. It is unclear what treatment is best to reduce fatigue in people with Parkinsons 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 Parkinsons disease.
Based on the current evidence, it is not clear what treatment is most effective to treat fatigue in people with Parkinsons disease. Future studies should investigate the effect of cognitive-behavioural therapy on fatigue in people with Parkinsons 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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Ritalin For Extreme Fatigue
Does anyone of my friends out there have any information or actually tried a low dose of Ritalin for extreme fatigue with our PD? If any one has experience with this , can you tell us how it helped or didnt help? Thanks, Karen
I tried it but wasnt a lot of help. I was switched to Concerta which did help. I had to go off because of heart issues not associated with the Concerta. I now take Ingrezza for the fatigue. Im surprised my insurance covers it because it is expensive. It is $5970 for 30 capsules, a one month supply.
Thank you for your response. K
I used methylphenidate for several years, along with c/l and amantadine. Generic Ritalin was helpful. As my pd advanced and my episodes of postprandial hypotension worsened, I have stopped the methylphenidate. All three drugs are induce vasodilation. Amantadine and methylphenidate are norepinephrine reuptake inhibitors â which for some of us may be helpful. See postings about locus coeruleus.
My friends child was on Ritalin for adhd which didnt help him much then he went on a trial run by Canterbury university on micronutrients. He takes Hardys daily essential nutrients and is now a completely different child.
Thank you so much . I will look at that. I am a vitamin taker but if this has more that I need , great! Is your husband on PD meds as well? Karen
What Can I Expect If I Have This Condition
Parkinsons disease is a degenerative condition, meaning the effects on your brain get worse over time. However, this condition usually takes time to get worse. Most people have a normal life span with this condition.
You’ll need little to no help in the earlier stages and can keep living independently. As the effects worsen, youll need medication to limit how the symptoms affect you. Most medications, especially levodopa, are moderately or even very effective once your provider finds the minimum dose you need to treat your symptoms.
Most of the effects and symptoms are manageable with treatment, but the treatments become less effective and more complicated over time. Living independently will also become more and more difficult as the disease worsens.
How long does Parkinsons disease last?
Parkinsons disease isnt curable, which means its a permanent, life-long condition.
Whats the outlook for Parkinsons disease?
Parkinson’s disease isn’t fatal, but the symptoms and effects are often contributing factors to death. The average life expectancy for Parkinson’s disease in 1967 was a little under 10 years. Since then, the average life expectancy has increased by about 55%, rising to more than 14.5 years. That, combined with the fact that Parkinson’s diagnosis is much more likely after age 60, means this condition doesn’t often affect your life expectancy by more than a few years .
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Fatigue In Parkinsons Disease And Potential Interventions
This abstract of a literature review discusses the measurement and pathophysiology of fatigue and fatigability. There rare no evidence-based treatments available. Several pilot studies are reviewed on the effects of pharmacological agents and exercise. These provide some insights on the design of future larger clinical trials. Fee for full article at IOS Press.
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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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.
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.
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What Tests Will Be Done To Diagnose This Condition
When healthcare providers suspect Parkinsons disease or need to rule out other conditions, various imaging and diagnostic tests are possible. These include:
- Blood tests .
- Positron emission tomography scan.
New lab tests are possible
Researchers have found possible ways to test for possible indicators or Parkinsons disease. Both of these new tests involve the alpha-synuclein protein but test for it in new, unusual ways. While these tests cant tell you what conditions you have because of misfolded alpha-synuclein proteins, that information can still help your provider make a diagnosis.
The two tests use the following methods.
- Spinal tap. One of these tests looks for misfolded alpha-synuclein proteins in cerebrospinal fluid, which is the fluid that surrounds your brain and spinal cord. This test involves a spinal tap , where a healthcare provider inserts a needle into your spinal canal to collect some cerebrospinal fluid for testing.
- Skin biopsy. Another possible test involves a biopsy of surface nerve tissue. A biopsy includes collecting a small sample of your skin, including the nerves in the skin. The samples come from a spot on your back and two spots on your leg. Analyzing the samples can help determine if your alpha-synuclein has a certain kind of malfunction that could increase the risk of developing Parkinsons disease.
