Advancing Research To Reduce Symptoms Experienced By People With Progressive Ms
A call to action from the International Progressive MS Alliance
30th March 2021
For many of the worst symptoms that may be experienced by individuals living with progressive forms of multiple sclerosis, there are insufficient treatment approaches that can relieve them and improve quality of life. To jump start research to address these gaps, an expert panel of researchers, representatives from industry, and people affected by progressive MS was convened by the International Progressive MS Alliance to highlight and focus research priorities to address key symptoms: fatigue, impairment of mobility and upper limb function, pain, and cognitive impairment.
The expert panel has published a paper outlining their recommendations as a first step toward driving research to develop much-needed solutions for these symptoms.
- The authors found that minimal research funding is currently directed toward these symptoms, and call out the need for increased research investments to identify solutions.
- Key knowledge gaps and priority research questions were outlined for the four symptoms, including the need for better ways to measure symptom severity, how to best treat them, and how to sustain the benefits of treatments to provide relief and improve function for people living with progressive MS.
- The paper was published in Multiple Sclerosis Journal on March 15, 2021.
How To Describe Ms Fatigue To Others
It can be complicated to describe your MS fatigue to friends, family, colleagues and healthcare professionals, but helping others to understand can make your daily life with MS fatigue less frustrating.
Sometimes friends and family may notice the effects of MS fatigue. For example, a relative might notice that you are walking more slowly later in the day, or they may notice that after completing certain tasks you become much slower in responding to conversations. Seeing the effects of MS fatigue can help those around you to offer assistance and support.
There will be times when your MS fatigue is not obvious to others, because it is an invisible symptom. Using analogies or metaphors to describe MS fatigue can help friends, family and colleagues understand and relate to what you are experiencing.
Tip : Manage Your Medications
If youre taking medications for other symptoms, check their side effects to make sure they arent adding to your fatigue.
Talk to your doctor about each medication you take and work together to determine whether you can stop taking those that can cause fatigue.
In terms of medication to help ease fatigue, your doctor can help you decide whats right for you.
While some medications can help with fatigue management, the Cleveland Clinic advises against using medications to treat tiredness.
This is because you may already be taking other medications for your MS, and its best to limit the number of drugs you take when possible.
However, everyones MS symptoms are different. If you try the tips in this article and nothing works, there are medication options to help reduce fatigue.
They include amantadine and modafinil , two drugs used off-label.
Theyre still being studied as a treatment for MS fatigue, which means your insurance may not cover them for this purpose. For more information about these drugs, talk to your doctor.
OFF-LABEL DRUG USE
Off-label drug use means a drug thats FDA approved for one purpose is used for a different purpose that it hasnt yet been approved to treat.
However, a doctor can still use the drug for that purpose. This is because the FDA regulates the testing and approval of drugs, but not how doctors use drugs to treat their patients.
So, your doctor can prescribe a drug however they think is best for your care.
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What Is Ms Fatigue
MS fatigue is very different from the feeling of being tired or exhausted that people without MS may experience following heavy exercise or a busy day at work. It involves a sudden loss of energy and not being able to continue an activity. Fatigue can be either physical or mental fatigue or both at the same time.
Fatigue feels as if I am an inflatable, and someone has pulled the airstopper out! My brain goes fuzzy, I cant think clearly, my speech slurs and my eyesight goes. Swallowing becomes more difficult, my balance gets worse and my legs feel heavy and clumsy.
Unlike the limits of normal, everyday tiredness, which may give a little when pushed against, MS fatigue can feel like a barrier. It can be difficult to recognise what your limits are until youve overstepped them.
Whilst recovery from everyday tiredness is relatively swift, you may find that it takes much longer to build your energy levels back up again after an episode of fatigue.
Fatigue feels like being weighed down, as if youre trying to walk up to your neck in a deep, muddy river in heavy, wet clothes carrying shopping bags full of rocks.
As an ‘invisible’ symptom of MS, fatigue is sometimes not properly understood by family, friends or colleagues. Until it is experienced, it is hard to understand the impact of fatigue and how debilitating it can be. Fatigue is a major cause of stopping working or reducing working hours.
Physiotherapy To Reduce Fatigue And Improve Balance
Processing information from different sensory systems can stabilize the bodys centre-of-gravity and so prevent falls
Balance disorders occur frequently in MS, and can lead to abnormal postural stability and increased risk of falls.
Balance control is a complex skill. It involves the integration of sensory information from different systems, like the cerebellum, spinal cord, brain and visual areas.
Processing information from different sensory systems can stabilize the bodys centre-of-gravity and so prevent falls.
Because drugs provide little benefit for treating balance disorders in MS, rehabilitation may play a pivotal role. Different rehabilitation approaches have been described, but few trials to date have addressed rehabilitation of balance deficits in MS.
Recently, the Multiple Sclerosis Journal published the results of a single-blind, randomized, controlled trial involving 80 outpatients with MS at the Neuromotor and Cognitive Rehabilitation Research Centre of the University of Verona, Italy.
The aim was to compare the effects of new balance training with conventional rehabilitation on a large sample of patients with MS.
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Rule Out Health Problems
Fatigue is a common symptom of many illnesses, including diabetes, heart disease, arthritis, anemia, thyroid disease, and sleep apnea. Talk to your doctor if you feel unusually tired.
Many medications can contribute to fatigue. These include some blood pressure medicines, antihistamines, diuretics, and other drugs. If you begin to experience fatigue after starting a new medication, tell your doctor.
Fatigue Due To Medication
Many of the medications commonly used to treat MS symptoms can cause or worsen fatigue as a side-effect. Particular medications to note include interferons, steroids , antidepressants and medications for spasticity or pain.
Because the range of medications that may aggravate fatigue is wide, it is important to talk to your GP or neurologist if you have concerns about any medication you are on. Note: Drugs that assist with sleep may cause sedation and drowsiness during waking hours, which can be confused with fatigue. If you have any concerns, talk to your GP or neurologist.
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Selection Criteria For Articles
Articles with the following characteristics were selected for meta-analysis: 1) original research articles 2) clinical trial studies 3) full text articles and reports 4) studies examining the relationship between exercise and fatigue in MS patients, and articles published in Persian with English abstract and English .
Are There Other Causes Of Fatigue Besides The Ms
Obviously, people with MS can be tired for other reasons. For example, they may have sleep disorders that interfere with restful sleep. People with MS may have a condition called restless leg syndrome, where they feel that they have to move their legs to get relief. They may also have periodic leg movements, which is when legs kick involuntarily during sleep. Another condition affecting sleep is sleep apnea, which is also common among the general population.
Certain medications may affect sleep or cause fatigue. Alcohol or drug use may alter sleep or cause drowsiness. Sometimes, people have other medical conditions, such as infections, anemia, or a reduced thyroid function, which can increase fatigue.
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What Is Multiple Sclerosis
According to the National Multiple Sclerosis Society:
Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.
Multiple sclerosis refers to many areas of tissue scarring and damage. The main type of tissue that is damaged by MS is called myelin, the tissue that wraps around nerves and helps nerve fibers send chemical signals throughout the body.
When myelin is damaged its called demyelination. Some of the earliest signs and symptoms of multiple sclerosis include changes in sense of touch, loss of strength in one arm or leg, tingling, burning and itching. When myelin is damaged, nerve signals reaching the eyes, brain and spinal cord slow down or stop. As MS worsens with time the brain can sometimes shrinks in size as more myelin and axons are destroyed, leading to decreased cognitive functioning and many other symptoms related to nervous system dysfunction.
Can you be born with multiple sclerosis? Most people who develop MS do so as young adults. Its not exactly known what causes all cases of MS, but experts believe that one common cause might be exposure to viruses early in life. Examples of two viruses that might trigger MS include herpesvirus and retrovirus. Its possible to start developing symptoms of MS early in life but not receive a diagnosis until years later when the condition has progressed.
How To Perform Pt When Symptoms Get In The Way
People with MS who want to exercise may be apprehensive to start because of their symptoms. Thats why its important to get a doctors approval and to always exercise in moderation.
Fatigue is one of the most common and debilitating symptoms of MS, and it often limits activity tolerance, Jones noted during the MSAA event. While fatigue with exercise doesnt increase disease progression, it can increase any of your MS symptoms. Allow yourself to rest at your first sign of fatigue, or before that point, even if you feel good, to prevent excessive fatigue when youre exercising.
Jones noted that people may just need a short rest before they can continue to exercise. Some people with MS find that their fatigue levels depend on their medication cycle or the time of day. It can be helpful to pinpoint the time frames when they have the most energy and use those periods to schedule exercise.
Alternatively, you can spread exercise throughout the day, performing short bouts every couple of hours, Jones said. And if exercising causes you to be fatigued, so much so that you cant complete self-care activities, that type of exercise is too intense for you.
Physical therapists can help people with MS modify exercises as needed if the condition causes symptoms that make PT challenging. Be sure to start any new exercise routine gradually and allow your body enough time to rest and adjust to this change, Jones said.
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Recognize And Manage Depression
Depression can be a major problem in MS. And depression often contributes to fatigue. Symptoms include changes in appetite or sleep, irritability, and a feeling of hopelessness or guilt.
Make sure to discuss your depression with your healthcare provider because it is treatable. Counseling and medication can help your depression and may alleviate your depression-induced fatigue as well.
Exercise Therapy For Fatigue In Multiple Sclerosis
Multiple sclerosis is a chronic disease affecting over 1.3 million people globally. MS is characterized by diffuse damage to the central nervous system, leading to a wide range of different physical and cognitive symptoms. One of the most prominent and disabling symptoms of MS is fatigue. Currently, there is no effective medicine to reduce fatigue in people with MS. Treatment with exercise may be a way to reduce fatigue either directly by changing how the body works, for example hormonal function, or indirectly through improved physical activity and general health.
We searched scientific databases for clinical trials comparing exercise to no exercise or other treatments in adults with MS. The evidence is current to October 2014.
We found 45 trials, involving 2250 people with MS, assessing the effect of exercise therapy using self reported fatigue. We used 36 studies, involving 1603 people with MS, in an analysis. Combined, these 36 trials supported the idea that exercise therapy may be a promising treatment to reduce fatigue without side events. This finding seems especially true for endurance training, mixed training , or ‘other’ training . To assess the safety of exercise therapy we counted the number of reported MS relapses in the people receiving exercise therapy and in people in a non-exercise group and did not find a significant difference.
Quality of the evidence
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Fatigue Caused By Disability
MS can cause problems with mobility and muscle control. Compensating for these disabilities requires greater energy and effort than would otherwise be necessary to perform daily tasks. When some muscles cannot perform certain tasks other muscles are used instead and the extra work can tire those muscles, leading to additional fatigue.
Neurophysiotherapists and physiotherapists can demonstrate exercises to strengthen and maintain body functioning and there is a range of equipment available to help conserve energy and reduce stress on muscles and joints. Occupational therapists can suggest modifications to your home or workplace to improve your efficiency and reduce the effort involved in daily tasks. Regional MS Community Support Staff, friends, family members and other people with MS can be useful sources of practical advice on ways to reduce energy needs.
Tips To Conserve Energy
Use Adaptive Aids.Reachers, dressing aids, and other adaptive equipment can significantly help conserve energy when dressing, bathing, and performing other household and personal activities. Many of these items may be obtained through MSAAs Equipment Distribution Program . Please visit mymsaa.org or call 532-7667 for more information.
Shop from Home.Rather than using valuable energy walking around stores, use catalogs or order items online. In addition to avoiding the crowds and exhaustion from walking through stores or malls, ordering clothes allows you to try them on at your leisure when your energy level is highest. Many grocery stores also offer online ordering with either free delivery or a minimal charge for delivery.
Take Fewer Steps.Try to take care of as many things as possible in one room to eliminate extra trips.
Consider Telecommuting.A great way to conserve energy is to reduce the amount of time spent traveling to and from work. Ask your employer about working part of the week from home.
Dont Get Overheated.This can cause fatigue. Wear your cooling vest or other cooling apparel and try to go outside either early in the morning or later in the evening, when temperatures are at their coolest.
Selective Serotonin Reuptake Inhibitors including Zoloft® , Paxil® , and Prozac®
Wellbutrin® is a NDRI antidepressant , and is one of the most energizing and most effective of the non-SSRI antidepressants against fatigue.
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What Can I Do If I Have Fatigue
Although fatigue cant be cured, there are techniques that can be used to reduce the impact it has on your daily life.
There are two main aspects of managing fatigue.
- Ensuring you have the best levels of energy available eg, through eating healthily, staying active, getting enough sleep, reducing stress and improving your mood.
- Learning how to use that energy in the most efficient way eg, by planning in advance, prioritising and delegating tasks, and pacing yourself.
Although the key person in fatigue management is you, health professionals, such as an MS nurse, occupational therapist or physiotherapist, can support you through this process and help you develop strategies to manage your fatigue.
Do reach out to them if fatigue is an issue and you need some advice and support you don’t have to manage fatigue on your own.
Managing Fatigue In Multiple Sclerosis
Experts recommend several fatigue management strategies that include evaluating and treating any secondary causes , followed by drug therapy, exercise, and self-management .
There is limited information about the effects of disease-modifying therapies on MS-related fatigue. Some studies suggest interferon- and glatiramer acetate as effective DMTs to reduce fatigue. No such effect has been observed with teriflunomide, dimethyl fumarate, or alumtuzumab.
A published trial showed that alfacalcidol reduced fatigue. Carnitine was also shown to improve fatigue in another study.
The FDA-approved therapy 4-aminopyridine is used to treat MS-related walking ability, and has been shown to improve fatigue in studies such as this one.
Other effective strategies include rehabilitation and cognitive behavioral therapy .
Fatigue can also be significantly eased by treating underlying sleep disorders, like using continuous positive air pressure for sleep apnea, drug therapy or CBT for insomnia, and medications for restless leg syndrome or other and nighttime limb movements.
A 2016 study gave an overview of both the challenges in treating fatigue in MS patients, and the various approaches shown to be effective. Its authors suggested a comprehensive approach, including self-management strategies, rehabilitation, CBT, and the treatment of underlying sleep disorders and potentially other comorbidities.
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Axonal Loss And Altered Cerebral Activation
As conventional measures of T2 lesion volume and atrophy have fallen short in providing a basis for fatigue in MS, many investigators have relied on non-conventional neuroimaging techniques to shed further insight. The demonstration on positron emission tomography of decreased regional glucose metabolism in the frontal cortex and basal ganglia of fatigued MS patients has suggested that neuronal dysfunction in these regions may play a role. Magnetic resonance spectroscopy studies have shown significant reductions in N-acetylaspartate/creatine ratios in multiple brain regions among fatigued MS patients in comparison to non-fatigued MS patients, suggesting axonal loss as a contributing factor., MS-related fatigue also may arise at least in part from compensatory reorganization and increased brain recruitment, as functional MRI studies that have demonstrated increased volumes and patterns of activation in the cingulate gyri and left primary sensory cortex in fatigued MS patients compared to non-fatigued patients.