Exercise
To function all day long doing the activities of daily living, a person has to exercise their body, because activities of daily living require the capacity to move easily and with endurance. For someone with MS, the capacity to exercise is absolutely fundamental to their quality of life. Every effort should be directed to maintaining the capacity to walk, because once a person cannot walk, their life changes dramatically for the worse, becoming incredibly difficult on multiple levels.
However, people with MS have damage in the central nervous system, the part of the body which is fundamentally responsible for the capacity to exercise. That damage can be catastrophic to the point of complete paralysis. So telling people to exercise is probably good general health advice, but telling someone with MS to ‘exercise’ without being fully aware of their individual physical and material circumstances or defining what ‘exercise’ means in their particular case, can be distinctly unhelpful.
Every body is different:
In years gone by, some fortunate people with MS were often managed in a more ‘hands on’ manner by physicians who were able to observe them closely, sometimes in a hospital setting, or even in the home. This occurred in the days before the notion of ‘evidence based medicine’ or ‘research based medicine’ where decisions on individual care now often seem to be based on a study of what happened to some other people somewhere, once.
Roy Swank, writing in The Multiple Sclerosis Diet Book states “If first seen during exacerbation or in early phases of remission, patients are cautioned to rest as much as possible, avoid fatigue, and enter into very limited physical exertion’. He notes as a general observation in relation to MS, that “When the patient overexerts frequently or for long periods, and fails to allow sufficient time for recovery, deep fatigue may be prolonged. Several months of rest may then be necessary for recovery.” He also notes three different types of MS patients in relation to exercise tolerance, those who can walk normally, those who walk with difficulty, and those who cannot walk. Perhaps this was Swank’s way of saying “every body is different”. Swank worked practically (as opposed to theoretically) with thousands of MS patients over several decades and his first book on a low fat diet for MS came out in 1977.
Times have changed. By 2010, in his book Overcoming Multiple Sclerosis George Jelinek, who based his work in part on Swank’s low fat diet study, lists a number of sources and states “Regular exercise is safe for people with MS and improves function, mood and quality of life”.
He does however note that “recent studies have shown that people with MS do less exercise than those in the general population”. Perhaps it is not entirely surprising that people with a crippling, incurable neurological disorder whose worst symptoms include crushing fatigue and the incapacity to move their limbs properly (if at all) are doing less exercise than other people.
In the “Latest Word” section of the Overcoming Multiple Sclerosis website the following piece appeared under the title “OMS offers the best solution to fatigue”:
“An interesting response to our post on the OMS Facebook page a couple of days ago about a new paper showing that exercise actually improves fatigue (Exercise when Fatigued). The response from one OMSer was: “Don’t really understand, when I am battling fatigue I can handly move a muscle let alone walk!“ And this was very representative of what many people with MS believe about fatigue, and many health professionals have taught over the years, that the solution is to conserve energy. Well the paper we posted, and our important HOLISM data show exactly the reverse: the more one exercises, the more energy one has, and the less fatigue.
Actually our key paper on fatigue in 2,500 people with MS from 57 countries showed that healthier lifestyles are associated with much less fatigue, and another paper showed that people following the OMS approach have dramatically less fatigue, about one-third the risk of being seriously fatigued: the things that keep you well after a diagnosis of MS also prevent fatigue. What a win-win situation! Enjoy your exercise…
George Jelinek”
The response to the lived experience of this person with MS was a reference to a ‘paper’ that essentially discounted that experience. The response also referred to the ‘belief’ that people with MS have about their own lived experience of fatigue. The ‘paper’ indicated it should not be so. The assumption here seems to be that people with MS hold a misguided 'belief' that conserving energy is the 'solution' to their crushing fatigue. Perhaps instead, people with MS are simply stating an objective fact, that they are so fatigued that they cannot even attempt exercise, that when they do force themselves to exercise it makes them worse, and conserving energy is not a solution, but their only terrifying option. Fatigue is not just in their heads. It is in their muscles, and they are crying out for practical, individualised investigation and help.
The HOLISM study appears to be based on a self-reported online questionnaire by a self-selecting group of responders, and according to the following page has only a five-year timeline. The methodology of the HOLISM study is disclosed here http://www.hindawi.com/journals/nri/2013/580596/
Perhaps this highlights the fact that there is no standard definition or grading system for what we mean when we talk about fatigue? Perhaps it also highlights a potential pitfall of the ‘research based’ approach, a tendency to rely on ‘papers’, regardless of the ultimate soundness of the methodology and the resulting potential to fall into a ‘one size fits all’ way of thinking, based on a reliance on what has happened to or been reported by OTHER people, not the person in front of you. But unfortunately for people with MS, when it comes to exercise, the map is not the territory.
It is one thing to have an incurable neuromuscular disease like MS, with a body that hurts and exhausts you both mentally and physically. It is quite another to battle through that hell, and then be made to feel in any way that you ‘should’ be benefitting from exercise, even though your attempts at exercise may be making you feel worse than you were before.
For some with MS, exercising makes them feel like they are a person in quicksand. The more they struggle to exercise, the deeper they sink. The more they try to exercise, the more sickness behaviours they experience, the more muscle pain they have to deal with, the more muscle weakness, and the more crushing their fatigue. A reference to a scientific paper that claims this should not be happening is unlikely to help. What they need is a hands-on scientific and medical examination of their individual circumstances to determine the cause.
A dogged commitment to finding out why exercise itself may be the driving factor in progressive disability in MS, could be the key to understanding one the most significant facets of the disease process, and help hundreds of thousands of people worldwide.
Every body really is different
For people with MS who are responding to exercise in the way the HOLISM study implies they can (essentially like a person who isn’t ill), then those people are fortunate indeed. Perhaps they can run marathons, jog, walk, stroll, sit, squat, kneel, stand, lift weights, do yoga, swim and so on without suffering a setback. If they get a pleasant boost from exercise, if they feel energised by it in both body and mind, there is no need for them to read a page like this on exercise, because they can just do it and enjoy the benefits. If they are able to exercise in a structured way, then perhaps they also have no difficulty completing the activities of daily life, and are essentially leading a life that may be virtually indistinguishable from their pre-diagnosis self. It may be that they will remain that way indefinitely, or it may be that they are simply in the early stages of MS, and will reach a stage when this carefree resilience to exercise evaporates.
This page is dedicated to the subset of MS patients who respond negatively to exercise and are desperate to be able to exercise again. It is dedicated to those who have found that inactivity leads to physical decline, but who have also found that exercise leads to even more rapid physical decline. It is dedicated to those caught in this terrifying trap, and who are desperate to escape it. It is dedicated to those who feel severe pain or fatigue when they exercise (or both) and who feel worse, both mentally and physically when they do so. It is for those people whose lived experience is that any attempt to exercise is actually punished by a spiral of disability, and apprehend that it is intimately linked to the symptoms of progression.
Barriers to exercise in MS – logistics:
Not only is every body different, everybody’s circumstances are different too. To participate in a structured program of exercise, a person either needs appropriate space and suitable equipment at home, or to be able to attend a place where they can access appropriate exercise equipment and instruction. For many people, they simply don’t have enough space in their home to create an environment where they can exercise easily, and even if they do, the cost of purchasing equipment and of obtaining proper instruction to meet their individual neuromuscular circumstances can be prohibitive. The alternative option, finding a place outside the home where they can exercise may also present unique difficulties to a person with MS.
Firstly, they must be able to find the time. The person with MS must be able to get to a venue when it is available to them, but also at a time that they can manage. Many able bodied people struggle to find the time and enthusiasm to attend exercise classes, let alone someone with a debilitating neuromuscular disorder. The necessity to attend a particular venue at a particular time can present a significant barrier to someone with MS.
Secondly, they must also be able to afford it, which may present an insurmountable barrier to someone who has a limited or non-existent capacity to work, or has competing priorities for limited funds, particularly someone who is burdened with unusual health and/or disability related expenses.
Thirdly, they must be able to get to the venue. Many people with MS are not fortunate enough to live near a gym, are not able to drive, struggle with public transport, cannot afford taxis, have no public transport in their area, or cannot rely on friends and family for reliable transportation. Even for those who can organise transport, getting into and out of exercise gear, showering and getting dressed afterwards, walking any distance, negotiating kerbs, getting into and out of vehicles and on and off the exercise equipment, can prove a mentally and physically exhausting prospect, before exercise has even commenced.
Finally, people with MS may worry about being able to keep up with a class, whether they will work with others in a group or on their own, whether they can work at their own pace without being hurried by more able bodied participants, whether there will be somewhere to sit or lie down to rest and recover, whether they will be embarrassed by their physical presentation and unique difficulties in front of others, the proximity and suitability of toilets, the possibility of a toileting accident, access issues, getting on and off equipment, the possibility of a fall or injury, heat intolerance, sensitivity to noise and light, and the fear of exercising to a standstill and needing assistance to get home.
These and other barriers are very real, and possibly very difficult to imagine for someone who does not have MS, is not substantially affected despite their diagnosis, or who is only affected in minor ways.
Barriers to exercise in MS – neurological incapacity:
Some people with MS find even cognitive tasks, social interaction and sensory input to be overwhelming, let alone physical activity. However, if a person is able to overcome the logistical difficulties of exercising, they then have to deal with any neurological problems their MS presents them with. One major obstacle to exercise may be heat intolerance. The person with MS may not be able to exercise at a level which produces any gains, because a rise in core body temperature either exhausts them, or an affected limb stops working. This could cause neurological dysfunction to become very obvious, such as an ankle weakness or foot drop, causing a trip hazard. Balance and vision problems could be exacerbated, also risking a fall. Failure of a muscle whilst weight lifting could cause a serious injury. Paraesthesias (burning, tingling, numbness or the sensation of insects crawling through the skin and muscles) can make exercising intolerably uncomfortable. It is important that people with MS find ways to stay cool whilst exercising, and to be shown how to exercise safely to avoid injury. A climate controlled environment is desirable.
Another major barrier to exercising is paralysis. If a person is unable to move a limb, it is difficult to exercise it, yet range of motion exercises for paralysed limbs is essential to prevent permanent damage, such as contractures. In this case exercise is done passively (with the assistance of a machine or a physical therapist) or stimulated electrically with a functional electrical stimulation (FES) device, and it is done to maintain the status quo and/or to avoid harm, not necessarily to produce gains. Passive exercise machines and FES machines are expensive, specialised pieces of equipment and may be beyond the reach of many with MS.
The dangers of deconditioning
Deconditioning is the loss of muscle tone, strength and endurance that is caused by chronic disease, inactivity or loss of body function. In MS, it can be the outcome of a downward spiral of dis-use, where pain, fatigue, balance problems and disordered movements cause the person to rest from normal activity. This reduces the capacity to exercise, causing more resting behaviours, followed by reduced physical capacity and so on. It is particularly caused by bedrest, but any prolonged resting behaviour could trigger the spiral.
Deconditioning is not the same as being ‘out of shape’ or ‘unfit’. It’s a medical problem which commonly occurs in hospitals where people are often immobilised due to ill health and which hospital staff should be aware of and attempt to manage. By contrast, most MS related deconditioning will happen quietly at home, and unless the person with MS is actively self-managing, has a knowledgeable carer, or a medical team that is vigilant and proactive, they are greatly at risk of suffering deconditioning, a condition which even in the absence of lesions on MRI could produce many of the worst symptoms of progressive MS. This effect of bedrest and deconditioning has been called the ‘cascade of dependency’.
This presentation discusses the dangers of deconditioning from bedrest http://aging.ufl.edu/files/2011/01/deconditioning_campbell.pdf
A healthy person faced with deconditioning will require a period of physical rehabilitation to regain their strength once the illness that caused their bedrest has been overcome. However, people with MS have a chronic illness which (even in remission) may not permit a full recovery, leaving them with chronically debilitating symptoms which must be overcome on a daily basis.
Ideally, MS patients would avoid the prolonged resting which causes deconditioning. However, in the midst of an exacerbation, suffering progressive neurological dysfunction or the chronic fatigue of MS, the person with MS will need active (proactive) expert moral support and practical assistance in order to prevent a spiral of dis-use and a cascade of dependency. They cannot just be left alone at home to their own devices, or they are likely to deteriorate.
Exercise intolerance is very real
If the barriers to exercise which are listed above can be overcome by the person with MS, they may then run into the most difficult barrier of all, exercise intolerance. Exercise intolerance is not exercise resistance, laziness, or a fear or dislike of exercise. It is a medical condition where an attempt to exercise causes worsening disability.
It is seen most clearly in Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, where exercise intolerance essentially defines that crippling syndrome. There are many similarities between MS and ME/CFS. In February 2015 The Institute of Medicine proposed both a new name and a new diagnostic criteria for ME/CFS, recommending that it be called “systemic exertion intolerance disease” (SEID). This reflects the lived experience of patients and their physicians and researchers, that the defining symptom of SEID is a sustained depletion of energy following minimal activity, called post-exertional malaise, and that it is a disease in its own right http://sacfs.asn.au/news/2015/02/02_12_cfs_gets_another_new_name.htm
The institute of medicine’s report can be found here http://www.nap.edu/read/19012/chapter/1#iv
This report is a tremendous resource because it is a comprehensive backgrounder to SEID/ME/CFS with multiple references to published research.
Post exertional malaise (PEM) is also known as Post-Exertional Neuroimmune Exhaustion (PENE) but to sufferers of the illness, PEM is often just called a ‘crash’.
This Victorian Government Better Health Channel page notes that these crashes can occur after minimal exercise, there can be a delayed reaction of a day or so, and the crashes can last days, weeks, months, and even years https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs
When Roy Swank was making his observations about how people with MS are affected by exertion, chronic fatigue syndrome was unknown, so he could not ‘see’ it. However, when he warns us that “When the patient overexerts frequently or for long periods, and fails to allow sufficient time for recovery, deep fatigue may be prolonged. Several months of rest may then be necessary for recovery” he was essentially describing chronic fatigue syndrome.
It should be noted that chronic fatigue syndrome is so severe in its neurological manifestations, that early attempts to describe the disease (1938) referred to it as 'atypical poliomyelitis' and described symptoms such as 'rapid muscle weakness, vasomotor instability, clonic twitches and cramps, ataxia, severe pain (usually aggravated by exercise), neck and back stiffness, menstrual disturbance and dominant sensory involvement'.
It should be borne in mind that people with SEID/ME/CFS do not usually have the lesions in the CNS that are found in MS, yet they suffer a very similar, crippling fatigue that can cause them to progressively lose their capacity to function, until they become wheelchair bound or bedridden, just like someone with progressive MS. If crippling fatigue leading to complete incapacity can be present without lesions in the CNS, how much more so could it be present in MS, where the brain and spinal cord can take considerable damage.
Treating post exertional malaise
Exercise is necessary for people with MS to avoid deconditioning and to maintain the capacity to conduct the activities of daily living. Post exertional malaise can stand in the way of these goals.
An exercise regime that is so restricted by the need to avoid a ‘crash’, that it is unable to even provide for physiological maintenance is of little use to the person with MS. An exercise regime that is so taxing that it causes a ‘crash’ that results in an exercise-free recovery period and associated deconditioning is worse. Expert assistance is required to balance the individual’s exercise program so that it produces physiological maintenance and gains, but without any harm.
It may come as a relief to a person with MS to know that the exercise intolerance they are experiencing may be similar to or identical to a known medical condition which they can explain to their doctor, and which may result in a referral to a specialist who can investigate their particular circumstances. However, SEID/ME/CFS has no known cause or cure, and the treatment of post exertional malaise is not yet settled, nor is the ideal exercise program for the person with chronic fatigue.
The orthodox perception is that the mysterious MS progression happens due to a mysterious underlying disease process, and this mysterious progression causes a loss in the capacity to perform structured exercise and the activities of daily living.
The author has spoken to (or corresponded with) nurses, doctors, physiotherapists, and other specialists such as neurologists, exercise physiologists, biochemical researchers, dieticians, MS nurses, and specialist MS physiotherapists, but has been unable to find any medical professional who understands that chronic fatigue syndrome symptoms may be a coexisting factor in MS, with specific implications for a worsening of disability following attempts at structured exercise or even the activities of daily living.
The identification of this issue, and the development of a management program to deal with it could represent a substantial breakthrough in the practical treatment of progressive MS.
A person with MS who apprehends that instead of making them feel better, exercise is making them measurably worse, causing muscle wasting, or actively reducing their capacity to exercise further, may seek medical advice, but may need to be persistent in order to invert the orthodox way that medical professionals think about MS and progression.
Local SEID/ME/CFS support groups or national associations may be able to assist a person with MS to manage the chronically fatiguing aspects of their illness, and to help them to understand and manage their post exertional malaise.
A physiotherapist, neurophysiotherapist or exercise physiologist may also be able to help, but possibly only with the exercise side of the equation, with suggestions for the type of exercise, frequency, intensity, and a graded rehabilitation program that will stimulate the health benefits of exercise, without provoking a crash. Functional electrical stimulation may play a part if available.
A doctor who specialises in chronic fatigue syndrome may help from the other side of the equation, potentially unravelling any underlying health issues that are implicated in the fatigue state (but are unrelated to the CNS damage of MS), and examining any chronic infections or toxicity, supporting the person’s nutrition, endocrine function, immune system, cardiovascular health, sleep and metabolism.
If the inability to exercise is one of the main symptom of MS (and nearly every authority reports that it is), then attempting to address that inability to exercise by making a person exercise, does not make sense. Particularly in the absence of definitive research which outlines the precise physiological mechanisms of how this might work.
The reasons for a person’s inability to exercise need to be examined, and support offered so that they can return to a state where exercising becomes possible again. This must come from the non-exercise side of the equation, which addresses physiological support.
The literature often states that the causes of MS fatigue are ‘poorly understood’. For anyone with MS, that might as well mean ‘not understood at all’. People with crushing fatigue and exercise intolerance are now being told to exercise, without the advisor necessarily having any knowledge of individual circumstances. A person with MS may have an underlying chronic infection, a genetic illness like haemochromatosis, a dysautonomia like POTS, a sleep disorder like sleep apnoea, or any number of co – morbidities or complications of MS that make it extraordinarily difficult (if not impossible) for them to exercise. Until those comorbidities are treated and the barriers overcome then exercise may in fact make MS symptoms worse.
The exhortation to exercise should be tempered by advice that enables a person with MS to identify when the phenomenon of post exertional malaise is present, and provides them with access to a medical specialist who understands the phenomenon, and can address it in a person-specific way.
It is to be hoped that anyone with advanced MS who successfully overcomes seriously debilitating chronic fatigue and advanced deconditioning by addressing the biochemical and metabolic side of the phenomenon to the point where they can resume regular exercise and the activities of daily living, will share the secrets of their success with others in the MS community, and help the medical profession to focus on this aspect of MS, which is poorly understood at this time.
Links:
The following publications discuss the problems caused by bed rest:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1002823/
http://www.health24.com/Medical/Sleep/treating-sleep-problems/Effects-of-prolonged-bed-rest-20131025
http://physical-therapy.advanceweb.com/Article/Bed-rest-can-set-off-a-chain-of-complications.aspx
This article discusses muscle wasting after only short periods of inactivity and the need to space out protein consumption during the day, in order to provide protein in amounts that the body can process at one time http://www.nutraingredients-usa.com/Research/Horrifying-loss-of-muscle-mass-should-serve-as-wake-up-call-academic
This 2010 publication notes that fatigue is the single most common and debilitating symptom of MS, but that the phenomenon is still poorly understood. This article makes an attempt at examining possible causes http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2910465/
An article that notes how poorly fatigue is understood in MS. It tries to sort out the differences between ME/CFS and MS and notes that post exertional malaise is virtually unheard of in the MS literature. If specialists who work with MS do not know about post exertional malaise and post exertional neuroimmune exhaustion, they will not be able to ‘see’ it in their MS patients http://www.cortjohnson.org/blog/2014/11/06/fatigue-disorder-multiple-sclerosis-taught-us-chronic-fatigue-syndrome/
This publication links ME/CFS and MS and suggests that people with MS are ‘immunologically primed to develop symptoms of ME/CFS’ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3847236/
This study that was published late in 2015 relates to high dose biotin supplementation in progressive MS and begins to examine the causes of MS fatigue at a cellular energy level http://www.sciencedirect.com/science/article/pii/S0028390815300733
This study on high dose biotin notes that an unmyelinated axon may use up to 5000 times more energy than a myelinated axon, and mitochondrial injury may compound the problem
http://www.msard-journal.com/article/S2211-0348(15)00006-1/fulltext#s0030
This article discusses exercise therapy for ME/CFS http://www.cdc.gov/cfs/management/managing-activities.html
This article specifically addresses the difficulties of exercise in MS – pacing, cooling, intensity, graded increases, specific exercise for specific problems. The main point of this article is that it is unlikely that you can just tell someone with MS to exercise and leave them to it. They will need expert assistance. Does such a program exist for people with MS in Australia, with the lifelong commitment that PWMS require? http://msfocus.org/article-details.aspx?articleID=511
Terry Wahls was suffering from progressive MS. She had been in a tilt recline wheelchair for some four years before she engineered a remarkable return of function. She discusses this process here, and notes how all the way through her illness she attempted to exercise, but continued to decline. It would seem that exercise is not productive in MS until the capacity to exercise is restored, and this appears to have a metabolic origin, not an entirely neurological one. It was not until she struck a particular dietary combination that her capacity to exercise returned. Her recovery involved intensive exercise that initially began with functional electrical stimulation therapy http://180nutrition.com.au/2013/08/02/dr-terry-wahls/
Roger McDougall was wheelchair bound before he also engineered a remarkable return of function. He stated that it was four years before he could even fumble a button into its button hole. He used diet and supplements, but noted that his diet didn’t work for everyone. He theorised that this is because everyone is different, with different allergies and metabolic processes that need support in each case. He felt it was up to the individual to discover the allergies, deficiencies, or love of a particular food that is unhelpful to them. He too could not exercise until the capacity to exercise was restored, and in his case too, this appears to have had a metabolic origin, not an entirely neurological one. His story can be found here http://www.direct-ms.org/rogermcdougall.html
Diet
To function all day long doing the activities of daily living, a person has to exercise their body, because activities of daily living require the capacity to move easily and with endurance. For someone with MS, the capacity to exercise is absolutely fundamental to their quality of life. Every effort should be directed to maintaining the capacity to walk, because once a person cannot walk, their life changes dramatically for the worse, becoming incredibly difficult on multiple levels.
However, people with MS have damage in the central nervous system, the part of the body which is fundamentally responsible for the capacity to exercise. That damage can be catastrophic to the point of complete paralysis. So telling people to exercise is probably good general health advice, but telling someone with MS to ‘exercise’ without being fully aware of their individual physical and material circumstances or defining what ‘exercise’ means in their particular case, can be distinctly unhelpful.
Every body is different:
In years gone by, some fortunate people with MS were often managed in a more ‘hands on’ manner by physicians who were able to observe them closely, sometimes in a hospital setting, or even in the home. This occurred in the days before the notion of ‘evidence based medicine’ or ‘research based medicine’ where decisions on individual care now often seem to be based on a study of what happened to some other people somewhere, once.
Roy Swank, writing in The Multiple Sclerosis Diet Book states “If first seen during exacerbation or in early phases of remission, patients are cautioned to rest as much as possible, avoid fatigue, and enter into very limited physical exertion’. He notes as a general observation in relation to MS, that “When the patient overexerts frequently or for long periods, and fails to allow sufficient time for recovery, deep fatigue may be prolonged. Several months of rest may then be necessary for recovery.” He also notes three different types of MS patients in relation to exercise tolerance, those who can walk normally, those who walk with difficulty, and those who cannot walk. Perhaps this was Swank’s way of saying “every body is different”. Swank worked practically (as opposed to theoretically) with thousands of MS patients over several decades and his first book on a low fat diet for MS came out in 1977.
Times have changed. By 2010, in his book Overcoming Multiple Sclerosis George Jelinek, who based his work in part on Swank’s low fat diet study, lists a number of sources and states “Regular exercise is safe for people with MS and improves function, mood and quality of life”.
He does however note that “recent studies have shown that people with MS do less exercise than those in the general population”. Perhaps it is not entirely surprising that people with a crippling, incurable neurological disorder whose worst symptoms include crushing fatigue and the incapacity to move their limbs properly (if at all) are doing less exercise than other people.
In the “Latest Word” section of the Overcoming Multiple Sclerosis website the following piece appeared under the title “OMS offers the best solution to fatigue”:
“An interesting response to our post on the OMS Facebook page a couple of days ago about a new paper showing that exercise actually improves fatigue (Exercise when Fatigued). The response from one OMSer was: “Don’t really understand, when I am battling fatigue I can handly move a muscle let alone walk!“ And this was very representative of what many people with MS believe about fatigue, and many health professionals have taught over the years, that the solution is to conserve energy. Well the paper we posted, and our important HOLISM data show exactly the reverse: the more one exercises, the more energy one has, and the less fatigue.
Actually our key paper on fatigue in 2,500 people with MS from 57 countries showed that healthier lifestyles are associated with much less fatigue, and another paper showed that people following the OMS approach have dramatically less fatigue, about one-third the risk of being seriously fatigued: the things that keep you well after a diagnosis of MS also prevent fatigue. What a win-win situation! Enjoy your exercise…
George Jelinek”
The response to the lived experience of this person with MS was a reference to a ‘paper’ that essentially discounted that experience. The response also referred to the ‘belief’ that people with MS have about their own lived experience of fatigue. The ‘paper’ indicated it should not be so. The assumption here seems to be that people with MS hold a misguided 'belief' that conserving energy is the 'solution' to their crushing fatigue. Perhaps instead, people with MS are simply stating an objective fact, that they are so fatigued that they cannot even attempt exercise, that when they do force themselves to exercise it makes them worse, and conserving energy is not a solution, but their only terrifying option. Fatigue is not just in their heads. It is in their muscles, and they are crying out for practical, individualised investigation and help.
The HOLISM study appears to be based on a self-reported online questionnaire by a self-selecting group of responders, and according to the following page has only a five-year timeline. The methodology of the HOLISM study is disclosed here http://www.hindawi.com/journals/nri/2013/580596/
Perhaps this highlights the fact that there is no standard definition or grading system for what we mean when we talk about fatigue? Perhaps it also highlights a potential pitfall of the ‘research based’ approach, a tendency to rely on ‘papers’, regardless of the ultimate soundness of the methodology and the resulting potential to fall into a ‘one size fits all’ way of thinking, based on a reliance on what has happened to or been reported by OTHER people, not the person in front of you. But unfortunately for people with MS, when it comes to exercise, the map is not the territory.
It is one thing to have an incurable neuromuscular disease like MS, with a body that hurts and exhausts you both mentally and physically. It is quite another to battle through that hell, and then be made to feel in any way that you ‘should’ be benefitting from exercise, even though your attempts at exercise may be making you feel worse than you were before.
For some with MS, exercising makes them feel like they are a person in quicksand. The more they struggle to exercise, the deeper they sink. The more they try to exercise, the more sickness behaviours they experience, the more muscle pain they have to deal with, the more muscle weakness, and the more crushing their fatigue. A reference to a scientific paper that claims this should not be happening is unlikely to help. What they need is a hands-on scientific and medical examination of their individual circumstances to determine the cause.
A dogged commitment to finding out why exercise itself may be the driving factor in progressive disability in MS, could be the key to understanding one the most significant facets of the disease process, and help hundreds of thousands of people worldwide.
Every body really is different
For people with MS who are responding to exercise in the way the HOLISM study implies they can (essentially like a person who isn’t ill), then those people are fortunate indeed. Perhaps they can run marathons, jog, walk, stroll, sit, squat, kneel, stand, lift weights, do yoga, swim and so on without suffering a setback. If they get a pleasant boost from exercise, if they feel energised by it in both body and mind, there is no need for them to read a page like this on exercise, because they can just do it and enjoy the benefits. If they are able to exercise in a structured way, then perhaps they also have no difficulty completing the activities of daily life, and are essentially leading a life that may be virtually indistinguishable from their pre-diagnosis self. It may be that they will remain that way indefinitely, or it may be that they are simply in the early stages of MS, and will reach a stage when this carefree resilience to exercise evaporates.
This page is dedicated to the subset of MS patients who respond negatively to exercise and are desperate to be able to exercise again. It is dedicated to those who have found that inactivity leads to physical decline, but who have also found that exercise leads to even more rapid physical decline. It is dedicated to those caught in this terrifying trap, and who are desperate to escape it. It is dedicated to those who feel severe pain or fatigue when they exercise (or both) and who feel worse, both mentally and physically when they do so. It is for those people whose lived experience is that any attempt to exercise is actually punished by a spiral of disability, and apprehend that it is intimately linked to the symptoms of progression.
Barriers to exercise in MS – logistics:
Not only is every body different, everybody’s circumstances are different too. To participate in a structured program of exercise, a person either needs appropriate space and suitable equipment at home, or to be able to attend a place where they can access appropriate exercise equipment and instruction. For many people, they simply don’t have enough space in their home to create an environment where they can exercise easily, and even if they do, the cost of purchasing equipment and of obtaining proper instruction to meet their individual neuromuscular circumstances can be prohibitive. The alternative option, finding a place outside the home where they can exercise may also present unique difficulties to a person with MS.
Firstly, they must be able to find the time. The person with MS must be able to get to a venue when it is available to them, but also at a time that they can manage. Many able bodied people struggle to find the time and enthusiasm to attend exercise classes, let alone someone with a debilitating neuromuscular disorder. The necessity to attend a particular venue at a particular time can present a significant barrier to someone with MS.
Secondly, they must also be able to afford it, which may present an insurmountable barrier to someone who has a limited or non-existent capacity to work, or has competing priorities for limited funds, particularly someone who is burdened with unusual health and/or disability related expenses.
Thirdly, they must be able to get to the venue. Many people with MS are not fortunate enough to live near a gym, are not able to drive, struggle with public transport, cannot afford taxis, have no public transport in their area, or cannot rely on friends and family for reliable transportation. Even for those who can organise transport, getting into and out of exercise gear, showering and getting dressed afterwards, walking any distance, negotiating kerbs, getting into and out of vehicles and on and off the exercise equipment, can prove a mentally and physically exhausting prospect, before exercise has even commenced.
Finally, people with MS may worry about being able to keep up with a class, whether they will work with others in a group or on their own, whether they can work at their own pace without being hurried by more able bodied participants, whether there will be somewhere to sit or lie down to rest and recover, whether they will be embarrassed by their physical presentation and unique difficulties in front of others, the proximity and suitability of toilets, the possibility of a toileting accident, access issues, getting on and off equipment, the possibility of a fall or injury, heat intolerance, sensitivity to noise and light, and the fear of exercising to a standstill and needing assistance to get home.
These and other barriers are very real, and possibly very difficult to imagine for someone who does not have MS, is not substantially affected despite their diagnosis, or who is only affected in minor ways.
Barriers to exercise in MS – neurological incapacity:
Some people with MS find even cognitive tasks, social interaction and sensory input to be overwhelming, let alone physical activity. However, if a person is able to overcome the logistical difficulties of exercising, they then have to deal with any neurological problems their MS presents them with. One major obstacle to exercise may be heat intolerance. The person with MS may not be able to exercise at a level which produces any gains, because a rise in core body temperature either exhausts them, or an affected limb stops working. This could cause neurological dysfunction to become very obvious, such as an ankle weakness or foot drop, causing a trip hazard. Balance and vision problems could be exacerbated, also risking a fall. Failure of a muscle whilst weight lifting could cause a serious injury. Paraesthesias (burning, tingling, numbness or the sensation of insects crawling through the skin and muscles) can make exercising intolerably uncomfortable. It is important that people with MS find ways to stay cool whilst exercising, and to be shown how to exercise safely to avoid injury. A climate controlled environment is desirable.
Another major barrier to exercising is paralysis. If a person is unable to move a limb, it is difficult to exercise it, yet range of motion exercises for paralysed limbs is essential to prevent permanent damage, such as contractures. In this case exercise is done passively (with the assistance of a machine or a physical therapist) or stimulated electrically with a functional electrical stimulation (FES) device, and it is done to maintain the status quo and/or to avoid harm, not necessarily to produce gains. Passive exercise machines and FES machines are expensive, specialised pieces of equipment and may be beyond the reach of many with MS.
The dangers of deconditioning
Deconditioning is the loss of muscle tone, strength and endurance that is caused by chronic disease, inactivity or loss of body function. In MS, it can be the outcome of a downward spiral of dis-use, where pain, fatigue, balance problems and disordered movements cause the person to rest from normal activity. This reduces the capacity to exercise, causing more resting behaviours, followed by reduced physical capacity and so on. It is particularly caused by bedrest, but any prolonged resting behaviour could trigger the spiral.
Deconditioning is not the same as being ‘out of shape’ or ‘unfit’. It’s a medical problem which commonly occurs in hospitals where people are often immobilised due to ill health and which hospital staff should be aware of and attempt to manage. By contrast, most MS related deconditioning will happen quietly at home, and unless the person with MS is actively self-managing, has a knowledgeable carer, or a medical team that is vigilant and proactive, they are greatly at risk of suffering deconditioning, a condition which even in the absence of lesions on MRI could produce many of the worst symptoms of progressive MS. This effect of bedrest and deconditioning has been called the ‘cascade of dependency’.
This presentation discusses the dangers of deconditioning from bedrest http://aging.ufl.edu/files/2011/01/deconditioning_campbell.pdf
A healthy person faced with deconditioning will require a period of physical rehabilitation to regain their strength once the illness that caused their bedrest has been overcome. However, people with MS have a chronic illness which (even in remission) may not permit a full recovery, leaving them with chronically debilitating symptoms which must be overcome on a daily basis.
Ideally, MS patients would avoid the prolonged resting which causes deconditioning. However, in the midst of an exacerbation, suffering progressive neurological dysfunction or the chronic fatigue of MS, the person with MS will need active (proactive) expert moral support and practical assistance in order to prevent a spiral of dis-use and a cascade of dependency. They cannot just be left alone at home to their own devices, or they are likely to deteriorate.
Exercise intolerance is very real
If the barriers to exercise which are listed above can be overcome by the person with MS, they may then run into the most difficult barrier of all, exercise intolerance. Exercise intolerance is not exercise resistance, laziness, or a fear or dislike of exercise. It is a medical condition where an attempt to exercise causes worsening disability.
It is seen most clearly in Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, where exercise intolerance essentially defines that crippling syndrome. There are many similarities between MS and ME/CFS. In February 2015 The Institute of Medicine proposed both a new name and a new diagnostic criteria for ME/CFS, recommending that it be called “systemic exertion intolerance disease” (SEID). This reflects the lived experience of patients and their physicians and researchers, that the defining symptom of SEID is a sustained depletion of energy following minimal activity, called post-exertional malaise, and that it is a disease in its own right http://sacfs.asn.au/news/2015/02/02_12_cfs_gets_another_new_name.htm
The institute of medicine’s report can be found here http://www.nap.edu/read/19012/chapter/1#iv
This report is a tremendous resource because it is a comprehensive backgrounder to SEID/ME/CFS with multiple references to published research.
Post exertional malaise (PEM) is also known as Post-Exertional Neuroimmune Exhaustion (PENE) but to sufferers of the illness, PEM is often just called a ‘crash’.
This Victorian Government Better Health Channel page notes that these crashes can occur after minimal exercise, there can be a delayed reaction of a day or so, and the crashes can last days, weeks, months, and even years https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs
When Roy Swank was making his observations about how people with MS are affected by exertion, chronic fatigue syndrome was unknown, so he could not ‘see’ it. However, when he warns us that “When the patient overexerts frequently or for long periods, and fails to allow sufficient time for recovery, deep fatigue may be prolonged. Several months of rest may then be necessary for recovery” he was essentially describing chronic fatigue syndrome.
It should be noted that chronic fatigue syndrome is so severe in its neurological manifestations, that early attempts to describe the disease (1938) referred to it as 'atypical poliomyelitis' and described symptoms such as 'rapid muscle weakness, vasomotor instability, clonic twitches and cramps, ataxia, severe pain (usually aggravated by exercise), neck and back stiffness, menstrual disturbance and dominant sensory involvement'.
It should be borne in mind that people with SEID/ME/CFS do not usually have the lesions in the CNS that are found in MS, yet they suffer a very similar, crippling fatigue that can cause them to progressively lose their capacity to function, until they become wheelchair bound or bedridden, just like someone with progressive MS. If crippling fatigue leading to complete incapacity can be present without lesions in the CNS, how much more so could it be present in MS, where the brain and spinal cord can take considerable damage.
Treating post exertional malaise
Exercise is necessary for people with MS to avoid deconditioning and to maintain the capacity to conduct the activities of daily living. Post exertional malaise can stand in the way of these goals.
An exercise regime that is so restricted by the need to avoid a ‘crash’, that it is unable to even provide for physiological maintenance is of little use to the person with MS. An exercise regime that is so taxing that it causes a ‘crash’ that results in an exercise-free recovery period and associated deconditioning is worse. Expert assistance is required to balance the individual’s exercise program so that it produces physiological maintenance and gains, but without any harm.
It may come as a relief to a person with MS to know that the exercise intolerance they are experiencing may be similar to or identical to a known medical condition which they can explain to their doctor, and which may result in a referral to a specialist who can investigate their particular circumstances. However, SEID/ME/CFS has no known cause or cure, and the treatment of post exertional malaise is not yet settled, nor is the ideal exercise program for the person with chronic fatigue.
The orthodox perception is that the mysterious MS progression happens due to a mysterious underlying disease process, and this mysterious progression causes a loss in the capacity to perform structured exercise and the activities of daily living.
The author has spoken to (or corresponded with) nurses, doctors, physiotherapists, and other specialists such as neurologists, exercise physiologists, biochemical researchers, dieticians, MS nurses, and specialist MS physiotherapists, but has been unable to find any medical professional who understands that chronic fatigue syndrome symptoms may be a coexisting factor in MS, with specific implications for a worsening of disability following attempts at structured exercise or even the activities of daily living.
The identification of this issue, and the development of a management program to deal with it could represent a substantial breakthrough in the practical treatment of progressive MS.
A person with MS who apprehends that instead of making them feel better, exercise is making them measurably worse, causing muscle wasting, or actively reducing their capacity to exercise further, may seek medical advice, but may need to be persistent in order to invert the orthodox way that medical professionals think about MS and progression.
Local SEID/ME/CFS support groups or national associations may be able to assist a person with MS to manage the chronically fatiguing aspects of their illness, and to help them to understand and manage their post exertional malaise.
A physiotherapist, neurophysiotherapist or exercise physiologist may also be able to help, but possibly only with the exercise side of the equation, with suggestions for the type of exercise, frequency, intensity, and a graded rehabilitation program that will stimulate the health benefits of exercise, without provoking a crash. Functional electrical stimulation may play a part if available.
A doctor who specialises in chronic fatigue syndrome may help from the other side of the equation, potentially unravelling any underlying health issues that are implicated in the fatigue state (but are unrelated to the CNS damage of MS), and examining any chronic infections or toxicity, supporting the person’s nutrition, endocrine function, immune system, cardiovascular health, sleep and metabolism.
If the inability to exercise is one of the main symptom of MS (and nearly every authority reports that it is), then attempting to address that inability to exercise by making a person exercise, does not make sense. Particularly in the absence of definitive research which outlines the precise physiological mechanisms of how this might work.
The reasons for a person’s inability to exercise need to be examined, and support offered so that they can return to a state where exercising becomes possible again. This must come from the non-exercise side of the equation, which addresses physiological support.
The literature often states that the causes of MS fatigue are ‘poorly understood’. For anyone with MS, that might as well mean ‘not understood at all’. People with crushing fatigue and exercise intolerance are now being told to exercise, without the advisor necessarily having any knowledge of individual circumstances. A person with MS may have an underlying chronic infection, a genetic illness like haemochromatosis, a dysautonomia like POTS, a sleep disorder like sleep apnoea, or any number of co – morbidities or complications of MS that make it extraordinarily difficult (if not impossible) for them to exercise. Until those comorbidities are treated and the barriers overcome then exercise may in fact make MS symptoms worse.
The exhortation to exercise should be tempered by advice that enables a person with MS to identify when the phenomenon of post exertional malaise is present, and provides them with access to a medical specialist who understands the phenomenon, and can address it in a person-specific way.
It is to be hoped that anyone with advanced MS who successfully overcomes seriously debilitating chronic fatigue and advanced deconditioning by addressing the biochemical and metabolic side of the phenomenon to the point where they can resume regular exercise and the activities of daily living, will share the secrets of their success with others in the MS community, and help the medical profession to focus on this aspect of MS, which is poorly understood at this time.
Links:
The following publications discuss the problems caused by bed rest:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1002823/
http://www.health24.com/Medical/Sleep/treating-sleep-problems/Effects-of-prolonged-bed-rest-20131025
http://physical-therapy.advanceweb.com/Article/Bed-rest-can-set-off-a-chain-of-complications.aspx
This article discusses muscle wasting after only short periods of inactivity and the need to space out protein consumption during the day, in order to provide protein in amounts that the body can process at one time http://www.nutraingredients-usa.com/Research/Horrifying-loss-of-muscle-mass-should-serve-as-wake-up-call-academic
This 2010 publication notes that fatigue is the single most common and debilitating symptom of MS, but that the phenomenon is still poorly understood. This article makes an attempt at examining possible causes http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2910465/
An article that notes how poorly fatigue is understood in MS. It tries to sort out the differences between ME/CFS and MS and notes that post exertional malaise is virtually unheard of in the MS literature. If specialists who work with MS do not know about post exertional malaise and post exertional neuroimmune exhaustion, they will not be able to ‘see’ it in their MS patients http://www.cortjohnson.org/blog/2014/11/06/fatigue-disorder-multiple-sclerosis-taught-us-chronic-fatigue-syndrome/
This publication links ME/CFS and MS and suggests that people with MS are ‘immunologically primed to develop symptoms of ME/CFS’ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3847236/
This study that was published late in 2015 relates to high dose biotin supplementation in progressive MS and begins to examine the causes of MS fatigue at a cellular energy level http://www.sciencedirect.com/science/article/pii/S0028390815300733
This study on high dose biotin notes that an unmyelinated axon may use up to 5000 times more energy than a myelinated axon, and mitochondrial injury may compound the problem
http://www.msard-journal.com/article/S2211-0348(15)00006-1/fulltext#s0030
This article discusses exercise therapy for ME/CFS http://www.cdc.gov/cfs/management/managing-activities.html
This article specifically addresses the difficulties of exercise in MS – pacing, cooling, intensity, graded increases, specific exercise for specific problems. The main point of this article is that it is unlikely that you can just tell someone with MS to exercise and leave them to it. They will need expert assistance. Does such a program exist for people with MS in Australia, with the lifelong commitment that PWMS require? http://msfocus.org/article-details.aspx?articleID=511
Terry Wahls was suffering from progressive MS. She had been in a tilt recline wheelchair for some four years before she engineered a remarkable return of function. She discusses this process here, and notes how all the way through her illness she attempted to exercise, but continued to decline. It would seem that exercise is not productive in MS until the capacity to exercise is restored, and this appears to have a metabolic origin, not an entirely neurological one. It was not until she struck a particular dietary combination that her capacity to exercise returned. Her recovery involved intensive exercise that initially began with functional electrical stimulation therapy http://180nutrition.com.au/2013/08/02/dr-terry-wahls/
Roger McDougall was wheelchair bound before he also engineered a remarkable return of function. He stated that it was four years before he could even fumble a button into its button hole. He used diet and supplements, but noted that his diet didn’t work for everyone. He theorised that this is because everyone is different, with different allergies and metabolic processes that need support in each case. He felt it was up to the individual to discover the allergies, deficiencies, or love of a particular food that is unhelpful to them. He too could not exercise until the capacity to exercise was restored, and in his case too, this appears to have had a metabolic origin, not an entirely neurological one. His story can be found here http://www.direct-ms.org/rogermcdougall.html
Diet