If you live in London it is impossible not to have gotten caught up in London-Marathon fever over the weekend.
Eliud Kipchoge won the London marathon in the second fastest recorded time (two hours two minutes 38 seconds). Interestingly, Kipchoge wears an electric blue band on his wrist, where four simple words are written: “No human is limited”. He has obviously not met someone with advanced MS who is disabled.
In the study below people with progressive MS used up to 2.81x times more energy on average, for simple mobility tasks, compared to control subjects. The progressive MSers in this study accumulated an oxygen deficit and experienced fatigue and exertion when repeating simple motor tasks such as rolling over in bed, moving from a lying to a sitting or a sitting to standing position, walking and climbing steps. Reasons for why MSers use more energy is complex but part of it is due to deconditioning, i.e. simply being unfit.
We don’t know how the brain perceives fatigue but a higher oxygen cost during physical activity is measured by the body and results in a greater perception of fatigue. The reason why Eliud Kipchoge can run mile after mile at a pace no man or woman has done before is that he is conditioned to do so and has trained his brain to not feel fatigue.
“The mind is what drives a human being, If you have that belief – pure belief in your heart – that you want to be successful then you can talk to your mind and your mind will control you to be successful. My mind is always free. My mind is flexible. That is why I wear this band on my wrist. I want to show the world that you can go beyond your thoughts, you can break more than you think you can break.” Eliud Kipchoge.
Lessons from elite marathon runners and the findings from this study suggest that rehabilitation interventions that increase endurance during physical tasks will help reduce fatigue in people with progressive MS. The question now is to get NHS resources allocated to setting-up a National exercise and training programme for MS-related fatigue and to get MSers to buy into the benefits of regular exercise no matter how disabled they are. I know this is easier said than done, but that is no excuse not to get it done; it needs to be done.
Please note, it is also not only about exercise, but how you live your life.
Kipchoge’s believes that “living simply sets you free”. For nearly 300 days a year, he lives and trains at a simple training centre in Kaptagat, a tiny village in the Kenyan highlands. He is known as the “boss man” by his training partners but that doesn’t stop him cleaning the toilets or doing his share of the daily chores. If you are interested in being inspired please watch ‘Breaking2’ a Nike sponsored project to see if the 2-hour barrier for the marathon could be broken. It is not that Kipchoge came so close to breaking the two-hour barrier, missing it by a mere 25 seconds, but his philosophy on how to live that is so inspiring. I am in awe!
Devasahayam et al. Oxygen cost during mobility tasks and its relationship to fatigue in progressive Multiple Sclerosis. Arch Phys Med Rehabil. 2019 Apr 23. pii: S0003-9993(19)30257-6.
OBJECTIVE: To compare the oxygen costs of mobility tasks between individuals with progressive MS using walking aids and matched controls and to determine whether oxygen cost predicted fatigue.
DESIGN: Cross-sectional descriptive.
SETTING: A rehabilitation research laboratory.
PARTICIPANTS: 14 adults with progressive MS (54.07+8.46 years of mean age) using walking aids and 8 age/sex-matched controls without MS.
INTERVENTIONS: Participants performed five mobility tasks (rolling in bed, lying to sitting, sitting to standing, walking and climbing steps) wearing a portable metabolic cart.
OUTCOME MEASURE(S): Oxygen consumption (V̇O2) during mobility tasks, maximal V̇O2 during graded maximal exercise test, perceived exertion and task-induced fatigue measured on a visual analogue scale before and after mobility tasks.
RESULTS: People with progressive MS had significantly higher oxygen cost in all tasks compared to controls (p<0.05): climbing steps (3.60 times more in MS), rolling in bed (3.53), walking (3.10), lying to sitting (2.50), and sitting to standing (1.82). There was a strong, positive correlation between task-induced fatigue and oxygen cost of walking, (rs(13)=0.626, p=0.022).
CONCLUSIONS: People with progressive MS used 2.81 times more energy on average for mobility tasks compared to controls. People with progressive MS experienced accumulation of oxygen cost, fatigue and exertion when repeating tasks and higher oxygen cost during walking was related to greater perception of fatigue. Our findings suggest that rehabilitation interventions that increase endurance during functional tasks could help reduce fatigue in people with progressive MS who use walking aids.
Gavin,
Kipchoge was pretty amazing to watch. Especially as he just shed one wannabe after another without a flicker of expression as he approached the finish.
I have a question: In common with many pwMS, I used to be very fit. These days the issue is not the input – the mind over matter part – but the after effects. I can pull a split of 2:15 for 40min on the erg. Great.
I am destroyed for the next 2-3 days with near-crippling fatigue afterwards. I can do simple things but have entirely lost any sense of get up and go. It’s like it got up and went! It makes the rest of life very difficult and unproductive.
This makes me very reluctant as I try to scale it back to avoid that. It seems that if I do anything at all that remotely raises my effort beyond simple walking I pay later in proportion to the effort.
The deconditioning certainly affects the ability to initiate and sustain effort – for me, it is much worse than I used to be – but I don’t know if it is deconditioning that governs the severity of the after-effects.
Has there been any work done on how to discover the manageable level of input to avoid the crash afterwards?
Thank you.
Dominic
(Was on DMF, now Ocrelizumab – same thing so imagine not drug related)
I think you need to do a graded exercise programme with time to rest built in.
Graded and incremental so you re-condition slowly and maybe not too much exercising of systems with reduced reserve. Focus on the systems with maintained reserve, which will allow you to increase your cardiorespiratory fitness without exhausting the system itself. For example, if you have very weak legs do something with your arms instead (rowing and not walking/running).
Sometimes doing your exercise later in the day after completing your other daily tasks makes sense; the exercise-induced fatigue does not prevent you from doing the other tasks.
Treat your energy levels as a battery and work-out how best to use the battery optimally. Exercise will gradually increase the size of the battery.
> “The reason why Eliud Kipchoge can run mile after mile at a pace no man or woman has done before is that he is conditioned to do so and has trained”
Or much more likely the reason is he got a very special genetics, which allows him to do so
https://www.sciencedaily.com/releases/2017/04/170406121546.htm
And you could not approach him with or without any training
Ms or no ms
You may find this article on how the brain processes fatigue of interest. It not all about physical performance.
Fatigue is a Brain-Derived Emotion that Regulates the Exercise Behavior to Ensure the Protection of Whole Body Homeostasis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3323922/
If my legs are stiff, I feel horribly fatigued. If I limber up so that I’m more supple, the fatigue dissipates. I explained this to myself as my brain interpretting the stiffness as true fatigue, which it is not. The stiffness is fooling, confusing the brain. So stretching my legs is vital to control my fatigue.
Yup, genetics, born at altitude with concomitant increase in EPO levels etc etc.
But we are missing the point. He is one of many with similar genetics, etc. it is what makes him different to his compatriots that is the message. Can we learn from him? Conditioning and mental preparedness!
The cyclists going for the hour record often remark that it is as much about mental as physical fitness.
I think the importance of exercise shares features with the whole question of healthy diet – i.e. it’s a huge, complex area, not a one-size fits all. Just as it’s easy to eat poorly, given the plethora of junk food around, it’s equally tempting to be inactive, so that one’s whole attention can be given to screens and other mindless pursuits. I managed to discipline myself to exercise following the MS diagnosis and it has paid off – but looking back (15 years) I think my neuro team should have presented it as an integral part of the treatment. I was motivated by the stern warnings of a neurophysio, who told me that MSers should move every part of the body every day….. or else! Her mantras of ‘maintaining function’ and ‘keeping the memory of the correct movement in the brain cortex’ have stayed with me throughout. I suspect that exercise has been as important as the DMT, (perhaps even more so) given that I was on a less-effective CRAB drug for many years. The link between doing exercise and feeling OK is now part of life, even though I came to it out of fright!
Well written; I agree with you it is not about exercise alone, but how you live your life. This is called wellness and is a topic for another post.
A question that I always have is, is asking nerves that may already be working harder to maintain conduction as a result of damage/demyelination after lesions to work even harder under exercise a sensible idea? Could exercising be doing the very thing we’re trying to prevent ie could it exacerbate nerve loss?
I tend to share a sense of caution here MD. If I knacker myself doing housework, e.g. vacuuming the house using my heavy machine, shifting furniture around as I go, I feel pretty awful afterwards. But exerting myself in fresh air outdoors is something else, much more invigorating. I worry about oxygen levels doing too much indoors. At any rate, I keep windows open and exercise/work in short bursts indoors where possible.
Anecdotally – sample of 2 – several of my neutos have suggested that I am 26y from diagnosis w little physical disability precisely because of my very (as was) active lifestyle.
Either I have done a great deal of damage but somehow gotten past through another compensatory mechanism or it isn’t that damaging?
Lactate and gluconeogenesis in the brain it’s good
8.7.2.2 Lactate: A Cerebral Source of Energy
For a long time, it was considered that glucose was the sole energetic substrate
available for the brain. There are now growing experimental and clinical data against
this theory, which demonstrate clearly that lactate is a part of energy source in
human non-damaged brain and also a preferential if not obligatory source of fuel
during cerebral energetic crisis [68].
In a postabsorptive period, the brain releases a net amount of 50 μmol/min, while
after exercise, the brain shows a net uptake of lactate of 150 μmol/min [12]. In noninjured
human brain, lactate was found to contribute to cover 7–10% of energy
requirements and can reach up to 25% during exercise [12, 69, 70]. In healthy volunteers,
Bouzmebeur et al. [70], using nuclear magnetic resonance spectroscopy,
demonstrated that lactate is metabolized for 80% in neurons. Moreover, net cerebral
lactate oxidation is linearly related with arterial lactate concentration; in case ofhyperlactatemia, lactate transporters activity elevates, and lactate contribution to
brain metabolism can reach up to 60% of the global brain metabolism [12, 69, 70].
Lactate cerebral metabolism has been assessed in vivo in noninjured stimulated
brain of rats (sensory stimulation) [71]. The authors demonstrated that (1) stimulated
brain enables to provide a sustained neuronal activity for several hours in the
absence of glucose if lactate was present; (2) the brain oxidizes lactate in an activity-dependent
manner; and (3) lactate was preferred over glucose in non-stimulated and
stimulated brain as glucose consumption decreased was lactatemia dependent.
Schurr et al. were the first, more than 30 years ago, to demonstrate that cerebral
tissue enables to consume only lactate aerobically to maintain normal neuron function.
Since this time, many studies have supported the essential role of lactate in
cerebral energy metabolism, especially in injured brain [14, 72–74]
Lactate: Metabolism, Pathophysiology
http://doi.org/10.1007/978-3-319-64010-5_8
I have RR MS, I’m 29 and was training for a marathon when I was diagnosed at the age of 25. Even before the diagnosis I knew something was wrong. I went from managing 6 days of training to barely scraping together one or two if I was lucky as my fatigue had just soared. Simple tasks drained me despite my high level of fitness only weeks prior. I even noticed my muscles getting progressively weaker at an abnormal rate and despite raising this in clinic it was dismissed.
My level of fitness on first presentation was never measured, therefore the rapid decrease was never picked up until I had a massive spinal relpaspe that’s left me using mobility aids since 2016. Had I been listened to, they would have suspected that the current drugs I was on were clearly not doing their job but they are only ever concerned with the MRI rather than what the person is experiencing!!
Which brings me to the exercise point. It’s never ever taken into account or discussed in hospital. I didn’t exercise for 2 years following this relapse out of fear, then when I did go back it only ever made my fatigue and pain worse.
Access to neuro physios is a disgrace and I never received rehabilitation. This year I stumbled on a private neurophysio (hard to come by here) and she has changed my life. She is getting me exercising every day, starting with even a 5-min walk on a bad day and building to two 10-minute walks a day etc. I’ve had to quit all other classes as the plan is to build me up slowly without triggering pain and fatigue and this up-down cycle I’m stuck in. The idea is that moving a little every day is better than too much one day and then nothing for a week. As a past excerise addict it’s been hard to readjust to this but in doing so I can see my fitness improving at long last and the mental benefits of moving every day are as rewarding. I only wish I’d had her guidance at diagnosis so I could have worked on preserving my muscles and fitness then.
Why is the importance of exercise never addressed in clinic? I feel very let down by our system here and I feel doctors never look outside the box at what it is their patients are living with. Everything is about the MRI and even if you’ve developed new symptoms they’re dismissed unless there’s a lesion to prove you’re not lying.
For me, excerise is the best medicine. It has yet to improve my fatigue but it’s finally not making it worse and with all the stretches I’ve been given and the use of foam rollers and trigger point balls, I also now have a way to help calm down my pain on bad days. Tailored excerise programmes should be top of the prescription list in an MS clinic.
http://www.sleepreviewmag.com/2019/03/researchers-launch-clinical-trial-exploring-inspiratory-muscle-strength-training/
I’ve just purchased a powerbreathe plus from that well known online retailer in the hopes it might benefit my energy levels – only arrived yesterday so haven’t started using it yet, but I’d like to facilitate my capacity to exercise, in addition to the improvement I’ve noticed since increasing visits to the gym and committing to intermittant fasting.
I agree with Anon that mind over matter is telling myself that the fatigue in my quads isn’t reflective of over all fatigue.
I’d also recommend the brilliant piece of advice from the US neurologist Ben Thrower on his YouTube vid on fatigue, as part of which he focuses on fatigue and exercise: “go wave at the bike” He’s using the example of sticking to your exercise routine by referring to a recumbent bike in the basement (definitely an American house😆) I’ve found it useful to extend that approach to exercise in general and head to the gym thinking ‘Remember “go wave at the bike” – so if it’s a 5min day on the treadmill as opposed to a 3km day on the treadmill, So What?! I’m still benefiting.
Gavin, I just wish the NHS could afford to fund a few sessions with a neuro physio for each patient. I’ve no doubt I’d likely still have use of a walking stick and foot drop or that, even with improvement, I’d still have gait problems if it wasn’t for the physio I work with. Without correction of the basics – the essential movements – then surely exercise capacity and benefit is likely to be limited.
Fi – Based on your remarks I have just bought a Poerbreathe – thank you for pointing this out.
When asked previously about why I exercised so much I always replied that I knew at some point that my condition would cause me to slip. I was just trying to raise the point at which I slipped. Further to go before the bottom!
I’m liking your way of putting it, Dominic “further to go before the bottom,”
Here’s hoping that things like IF, exercise and now the use of the powerbreathe does keep the bottom a long way off!!
Agree with your use of the word ‘disgrace’ Rosie when it comes to NHS lack of provision of anything rehab or exercise based. Like you I found a private neuro physio and assistance online such as Ben Thrower and Trevor Wicken MS gym. I get so frustrated by the thought of all the PwMS who can’t afford to work with private physios and really annoyed at the lack of neurologists like Gavin who focus on the idea of ‘Wellness’ I’ve had 4 neuro since being diagnosed 3 years ago and only one mentioned exercise in passing!
As Gavin says on Twitter maybe exercise should be the next DMT (or words to that effect)
Exercise IS the most powerful DMT available to us .
I’m 61 , dx ppms 6 years ago. I was a competitive cyclist in my younger days so cycling comes easy to my and now , though I don’t walk well, I manage to ride a road bike an average of 200 km per week and am quite sure I’m living proof that exercise is neuroprotective. I use spd cleats and pedals to keep my feet on the pedals and I’m really fortunate to have the support of my wife who rides with me lots.
I also altered my diet on diagnosis, eating heaps of salads and fruit and very little red meat, bread and potatoes. I also practise programmed fatigue management, which covers both mental and physical fatigue. I’ve learnt not to over fatigue my legs as otherwise recovery is slow.
Exercise IS really important for pwMS.
I would mostly say I’m doing very well for very near 2 decades of PPMS, and my neurologist seems to think so too. (Although the cynic would say that thinking so makes their life easier.) When I’m feeling good, it’s all because I’ve always been so active, because I studied hard, because of my healthy diet. But on the odd bad day, the guilt starts – I didn’t try hard enough, I have been lazy, stupid, I failed. Then I have to shake myself and realise: No. This is just one sh*te disease with no ready answers, and I am doing my best, like everybody else.
Why isn’t there a questionnaire in MS nurse clinics to establish what exercise PWMS are taking? In the same way as mental health/quality of life is monitored (well, it is in my hospital!), a questionnaire could ask the important questions… that maybe no-one is asking at the moment. Wouldn’t neuros find this helpful and couldn’t it/shouldn’t it be part of the annual evaluation? And at little cost…
I’ve come to the conclusion that if you aren’t on the MS candy, (DMDs) neurologists don’t have time for you. A 10 minute appointment annually isn’t enough. DMDs come first. Other than that it’s other meds for symptoms with side effects that often make MSers feel less inclined to exercise. It’s as if we need a DMD pathway and a living well with MS pathway. Physio seems to be saved for when a person has a major change. When many of us slowly accumulate disability. Personally, I’m choosing to pay a physio to set me up with hydrotherapy exercises. Ironically, we have a hydro pool at our hospital. When I acquired about using it, I was told it wasn’t for MSers as the staff felt “ apprehensive” about the impact of the therapy on MS. That came from a professional source a few years back. I’ve given up with local physio support. However I do have accupuncture for pain. On the NHS. With an incredible forward thinking doctor.
I’m wondering why your local MS Society isn’t challenging the hospital’s position on using the hydro pool. I’m lucky enough to live close to a privately-run hydro pool which has both one-to-one and small group hydrotherapy sessions with a physio, who works with you in the water. It’s kept me going for years – IMO an absolute crime to have a facility like this and not use it for the benefit of those with chronic conditions. Has anyone contacted the health authority? Does your MS nurse have a view?
Can anyone answer something that my physio can’t: given that physical activity can be greatly tiring for PWMS, are more calories burned than for people with normal energy levels?
more calories burned
Nice thats all everybody wants
🙂
On diagnosis 17 years ago, aged 40 I was very physically fit. I exercised everyday, running and regular cycling, yoga and Pilates. I was told by the neurologist not to continue this level of exercise during the winter. To conserve my energy. Well, I ignored him and carried on. My symptoms then were ON, balance problems and tremor in my arm. I’m so glad I did ignore the advice, it made no sense, I knew I would lose condition. However, gradually it caught up with me, and I now use aids to mobilise. Having said this I’ve continued to do small exercise routines, mainly seated, I have recently invested in a mountain Trike that uses arms to mobilise. Gradually I’ve gone from 4 minutes to 18 minutes of self propelling. But it does wipe me out. As does swimming but the fatigue feels in my head as well as limbs. I believe almost everyone can exercise to their ability. But there is little to no support. Or lack of knowledge from professionals. Exercise and MS just don’t get enough funds.
Geez, exercising was never mentioned by any of my neurologists as important.It was a dear friend who encouraged me to exercise with her, to try yoga, anything to get me moving. I’m stronger and feel like I have some control.
I’m another exercise convert (we are probably a self-selecting group). I’ve always been a strong walker and climber but had never seen the inside of a gym until one day an alien took control of my legs. I lost the ability to walk properly and it became incredibly exhausting. I needed to rest every ten minutes and quickly learnt the location of every bench and low wall near me. I was not in a good place. What turned it round for me was a referral 5 years ago to a physio for an arthritic knee (damaged by the aliens walking style!). Her message was simple: I had to follow an exercise regime to rebuild the muscles that had atrophied and stick with it. It worked. My ‘stride’ slowly returned and with specially adapted walking poles I can now manage 5 miles on my local hills once a week and feel better the next day.
Since diagnosis with PPMS I’ve also started attending a gym session with Neuro physio support organised by my local MS Soc. It all helps and staying as active as possible has mental as well as physical benefits. Just take it cautiously to begin with and find what works for you. Get professional help if you can and check out the many online sources for exercises such Fi has mentioned or the MS trust. Its never too late to rewire the neurons. I’m a senior citizen and it has worked for me.
To manage a five mile walk is impressive! My record so far is 2.5 , but I go on a walking holiday in the Lakes in July – specially adapted routes (‘Miles without Stiles’) and am hoping to recreate the exhilaration I felt pre-MS when fell-walking. Mindset is all and like you, breakthrough came via a neuro physio..
I hope you enjoy your walking holiday, Kay. I can only do longer distances with two walking poles. Without them I couldn’t a tenth of that and would feel like I’ve run a marathon. I try to get into a rhythm and have to keep telling my legs to relax – its counter-intuitive if you start to get tired or the going feels tough you start to push harder and your muscles seize up. I guess the walking poles help me to relax without falling over!
Oh, I’ll definitely have my walking poles in the Lakes! My ‘record’ of 2.5 miles (without them) is doing circuits on a cruise ship, round the perfectly flat teak deck…. On uneven surfaces I’m a fall waiting to happen.
That’s a great testimony Kay.
You are right , we are a ‘self selecting group’ . We understand the importance of exercise to our condition ; it so unfortunate that not all pwMS do and I feel that it’s our job to spread the word !
It certainly makes acceptance of the exercise regime easier if the pwMS was into some form of exercise in their previous life.
The neuro-physio connection is SO important; why on earth don’t other medical professionals detail this point? It’s almost like cross discipline jealously and is definitely myopic on their part !
Neuroplasticity is something that many researchers have been in denial of in the past; a prominent neuro-scientist confided to me recently that ten years ago he saw the concept as ” unscientific “.
Every person with MS should read ‘ The Brain That Changes Itself ‘ by Norman Doidge, MD . It’s subtitled Stories of personal triumph from the frontiers of brain science. It really is a book of Hope!
Great, but you’re sounding a bit like Jehovah’s Witness.
I have to say I didn’t follow it up beyond the initial response. It was available certain days for people with particular conditions but not MS. Not sure if this extended to all neuro patients. Sadly our MS group isn’t that strong. For lots of reasons. I could chase it, however I’ve limited energy, and have been busy focusing on finding other ways of staying fit. I may raise it with the MS nurse. The MS society did arrange locally for the use of a hydro pool in what was a “ Leonard Cheshire Home”. It seemed to be more for those who needed hoisting etc. I’m not sure that’s available anymore either. I did try and convince the physio to start an exercise group for MSers, but it never got off the ground.