What is fatigue in MS, and how does it differ from tiredness?
Fatigue is a persistent lack of physical and mental energy. It does not follow exertion, it is often there on waking, and sleep or rest does not make it go away. Normal tiredness eases after a night. Fatigue stays and sets a limit on what a day can carry.
Understanding fatigue calls for a brief look at the illness itself. In multiple sclerosis the body’s own immune system attacks the myelin sheath, the insulating layer around the nerve fibres in the brain and spinal cord. At the inflamed places, lesions form in which the conduction of signals is slowed or interrupted; later the nerve fibre itself can take damage. Because such lesions can lie anywhere in the central nervous system, the complaints differ so much from person to person: visual disturbance, altered sensation, unsteady walking, bladder problems, or indeed fatigue. Neurology makes the diagnosis from the course, the examination, magnetic resonance imaging and the spinal fluid.
Fatigue is one of the commonest symptoms of multiple sclerosis. During the course of the illness 75 to 90 per cent of those affected are touched by it, independently of how far mobility is restricted. Someone who walks and works well can have it too. One explanation is that slowed conduction demands more control: the brain has to put in more effort for the same performance, and that extra effort costs energy.
How you notice the difference
- Tiredness comes after the day; fatigue is already standing in the room in the morning.
- Tiredness gives way after sleep; fatigue is the same after eight hours.
- Tiredness affects the body; fatigue hits thinking as well: reading and listening tire you like climbing stairs.
- Tiredness is even; fatigue tips over suddenly, often in the middle of an activity.
Specialists distinguish primary from secondary fatigue. Primary means the exhaustion belongs to the illness itself. Secondary means something else is drawing energy as well, for instance disturbed sleep, pain, low mood, needing to pass water at night, or a low iron or vitamin level. The secondary part is treatable, which is why it is worth having it assessed by your doctor before settling in with the exhaustion.
Why do the people around you understand this exhaustion so poorly?
Because fatigue cannot be seen. There is no dressing and no blood value that proves it. Someone who looks well for an hour counts as healthy, and what comes afterwards the others do not see. Added to that is the picture of tiredness that everyone believes they know, which has little to do with fatigue.
The word itself gets in the way. Anyone who says they are tired gets advice: earlier to bed, less coffee. Both help with tiredness and change nothing about fatigue, and many people eventually stop mentioning it.
Then there is the delay. The price of a full day is rarely paid the same evening, but the next day or the one after. Someone who was at a party on Saturday and has to cancel on Monday is easily misread from outside, although the cancellation is the delayed consequence of Saturday. It helps to explain that once, calmly, to the people around you: not as an excuse, but as a known property of fatigue.
Sentences that have proved themselves in practice
- I have not had too little sleep. My battery has got smaller, and it charges more slowly.
- Today I can do one of three things. Tell me which one means most to you.
- If I lie down for half an hour now, I will still be here this evening. Otherwise not.
An energy diary turns the invisible into paper: for one week, note hourly what you did and how much strength was there afterwards. The sheet shows patterns that get lost in your head, and it convinces family members and managers better than any explanation.
What does energy management mean, and what is really evidenced?
Energy management means dividing the strength you have deliberately instead of spending it in the morning. Occupational therapy has structured courses for this, usually over six weeks in a group. Studies of them show a clear and limited result: daily life succeeds more reliably, while the fatigue itself stays unchanged.
Both halves of that result belong together. Fatigue cannot be trained away. What is evidenced concerns the handling of it: after a course, participants experience themselves as more capable in their own daily life, feel less restricted and are more confident that they can influence the consequences of the exhaustion. The severity of the fatigue does not measure any lower for it.
That is more than it sounds at first. Whether someone with the same amount of strength manages the shopping and the evening meal, or lies down after the shopping, decides the day. The German-language guideline on multiple sclerosis lists occupational therapy as a building block of non-drug treatment and names energy management courses explicitly.
What such a course works through
- How fatigue arises and how the picture of an energy account orders the day.
- Breaks: when, how long, and what a break looks like that actually restores you.
- A balanced day and the question of what takes precedence.
- Posture and surroundings, meaning seat heights, distances and work surfaces.
- Simplifying activities and leaving things out.
- Saying what you need, to family, to the people around you and to your employer.
- Setting your own goals and reviewing them after a few weeks.
Between the sessions there is practice at home. What comes of it in the practice in Thalwil follows your day, not a programme booklet. More on this under neurology.
How do you divide a day so that strength is left in the evening?
Four principles carry the division of the day: setting priorities, slowing the pace, planning and simplifying. They sound obvious and are not obvious in daily life, because they require leaving things out deliberately. They only take effect when played through at concrete actions rather than kept as good intentions.
- Setting priorities: the evening before, write down three things that count tomorrow. Everything else is a bonus. Not everything that could be done has to be done the same day, and some of it does not have to be done at all.
- Slowing the pace: plan breaks before the exhaustion arrives, not afterwards. A planned quarter of an hour lying down costs less than two unplanned hours. The break only counts if it restores you: for some people that is lying still, for others ten minutes of fresh air.
- Planning: put demanding things into the hours in which you have strength from experience, usually the morning. Not two heavy tasks on the same day. Keep an empty day free after a big appointment.
- Simplifying: check every movement for whether it works sitting rather than standing and whether something can be pushed rather than carried. Prepare vegetables in one go and freeze them, use the bathrobe instead of towelling dry.
Aids and adaptations that save energy
- A stool in the kitchen and in the shower turns standing time into sitting time.
- Light pans, a kettle with a small capacity, a trolley for the way to the table.
- A walking stick, a walking frame or, for an outing, a wheelchair: not giving up, but energy saved for the part that matters to you.
- At work: screen height, chair, short distances to the printer, a place for the break.
Which other aids take work off you in the household and how the funding runs is described in the article on assistive devices in daily life. If a hand is affected as well, the same tricks apply that are described in the article on using the hand again after a stroke.
Why does everything suddenly get worse in the heat?
This is called Uhthoff’s phenomenon. At a higher body temperature, damaged nerve fibres conduct less well, and around half a degree can be enough. Seeing and walking become temporarily worse and the exhaustion increases. After cooling down it recedes, and as a rule it is not a relapse.
The triggers are heat, a hot shower, a sauna, fever during an infection and physical exertion. Humid air makes it worse, because the body cools itself less well by sweating. Because the whole thing reliably recedes, it is also called a pseudo-relapse. If a symptom lasts longer than 24 hours although you have cooled down, it belongs in the neurology clinic.
- Put demanding things into the cool edges of the day, and in summer use the early morning.
- Shower lukewarm rather than hot, and avoid saunas and hot baths.
- Keep cold drinks ready, and cool compresses for the neck, wrists and forearms.
- Prepare cooling vests, cooling collars and cooling pads before the hot day and keep them in the fridge.
- Have fever assessed by your doctor and take infections seriously, because they set off the same thing.
Does exercise help against fatigue or cost extra strength?
Exercise helps when it is dosed. In a summary of more than twenty randomised studies, physical activity over at least four weeks reduced fatigue measurably. The volume studied was around 150 minutes a week, spread over several days. The trustworthiness of the evidence ranges from very low to moderate.
An older Cochrane review came to the same picture and named the limitations clearly: the samples were small, and fatigue was frequently measured only as a secondary outcome and in varying ways. Endurance training, mixed training, yoga and tai chi came off best. For the relapse rate there was no difference between training and non-training groups.
Two things follow from this for daily life. Training is safe and worthwhile, but it does not make the fatigue go away, and it does not replace the division of the day. That is why the volume is raised slowly, because raising it too quickly costs double the next day.
- Start with an amount you can certainly manage, five minutes if need be.
- Better short and several times a week than long and once.
- Only increase if the following day has stayed unremarkable.
- In the heat, lower the load, drink something cool and move the time.
- After two or three weeks, check what has changed by the evening.
What part do sleep and mood play in the exhaustion?
A large one, and a treatable one. Disturbed sleep and low mood strengthen the exhaustion, and the exhaustion strengthens them back. That is why assessing fatigue always includes the question about sleep, about mood, about pain and about needing to pass water at night.
The circle closes quickly. Anyone who has to go to the toilet several times at night sleeps in pieces and is empty in the morning. Anyone who is empty cancels appointments and becomes lower in mood. Anyone who is low in mood moves less, and the exhaustion increases. Every one of these points can be acted on, and none of them is a matter of character.
- Needing to pass water at night and bladder problems are treatable; raise them, even if it is uncomfortable.
- Pain, spasticity and cramps at night destroy sleep without your knowing why in the morning.
- Depression looks similar to fatigue and needs its own treatment. Your doctor makes that distinction, not a questionnaire on the internet.
- A nap of 20 to 30 minutes restores many people without disturbing the night; much longer daytime sleep often does not.
When thinking becomes hard as well, names go missing and the thread breaks, the exhaustion plays into it. How concentration and memory can be supported in daily life is described in the article on cognitive training.
How can you go on working with fatigue?
In Switzerland the majority of people with MS of working age are in employment, full or part time. Fatigue is the symptom that impairs work most often, independently of the form and severity of the illness. Because nobody can see it, it is easily read at work as a lack of effort.
What carries you at work is rarely the big solution. It is the shifts, such as the demanding task in the morning and a room for twenty minutes of quiet. Working from home saves the commute, but it demands that the structure of the day be set by yourself.
- Adjust hours and workload before nothing works any more. A reduction made early is more effective than an absence late.
- Put demanding work into the strong hours and routine into the weak ones.
- Enter short breaks in the calendar as fixed items, or they will not happen.
- Explain openly what fatigue is. Managers react differently to an explanation than to a cancellation.
- If an absence threatens, speak early with your doctor and with invalidity insurance; early detection exists for that purpose.
How a staged return is built up and who has a say in it is described in the article on returning to work. Occupational therapy can go through the work situation with you, rearrange the sequence of tasks and give reasons for the adaptations needed.
Occupational therapy requires a doctor’s prescription; it is billed to the insurer responsible, and what is left with you through the deductible (Franchise) and the retention fee (Selbstbehalt) is something that insurer will tell you. Treatment takes place in the practice in Thalwil or at home in Thalwil and the neighbouring municipalities, where the prescription provides for it. Appointments and how it works are described under the booking page.