Fatigue - insidious symptoms of MS

Fatigue is one of the most insidious symptoms of MS, and one which has devastating effects in almost every area of life.  It may make it impossible for you to carry on working full time; it makes it more difficult to bring up a family. 

Fatigue in MS is not like normal fatigue, from which you can recuperate quite easily with a good rest.  It is chronic fatigue, where everything seems to be an effort.  Even simple things, like hanging out the washing, become daunting tasks. 

Fatigue in MS is not just tired muscles.  It is the effect of the disease on the nerves which go to the muscles; and also the effect of the disease on the sensory nerves.  The sensory nerves affect touch, sight, taste, smell, and hearing.  So when you get fatigued, you can sometimes experience blurring of vision or slurring of speech. 

What happens when you get fatigued can differ from person to person.  Fatigue often worsens existing symptoms, or can bring on symptoms which only happen when you are fatigued.  Also, old symptoms can come back, with the nasty habit of reminding you of your last attack.  Severe fatigue can also bring on episodes of vertigo, where the ceiling spins. 

You can also feel ill, as if you have flu.  There are certain things which can bring on fatigue, as well as other MS symptoms.  When you know what these things are, fatigue is easier to avoid.  What brings on fatigue can differ from person to person. 

However, some of the most common things are: a hot day, humid weather, a hot bath, over-exertion, over-tiredness, a heavy meal, smoking, and stress.  Fatigue can also be one of the major symptoms of a food allergy. 

Why Do You Get Fatigued?

Any movement of any muscle requires energy.  Energy starts from glucose, and to convert glucose into energy, the muscle needs oxygen.  Oxygen is brought to the muscle by the blood circulating through it.  If there is not enough oxygen because of poor circulation, substances like lactic acid accumulate and prevent the muscles from working.  The oxygen supply to the muscles is increased when the blood flow is improved by exercise. 

Of course, the whole process of energy production and muscle contraction is a highly complex one.  However, it is important to understand the essential link between blood-flow, oxygen and the working of the muscles.  Fatigue happens when the blood flow, hence the oxygen flow to the muscles, is inadequate. 

Fatigue can also be caused by MS as a direct result of damage to the central nervous system.  This can cause heat sensitive fatigue and result in feeling of lassitude. 

Exercise to Combat Fatigue

If you are physically fit, you have a better chance of withstanding fatigue.  To keep fit, you must keep the muscles exercised.  You should never exercise to the point of exhaustion, and should stop before feeling tired or hot.  However, if you do not do any exercise at all, you will get fatigued much more easily than if you do.  Exercise tones up the whole system.  After a session of gym, yoga, or swimming, for example, you should have more energy, not less.  Your body will give you early warning signals as to when it is time to stop and rest. 

Heat and Humidity

A common experience with MS is to become very sensitive to heat, particularly humid heat.  Hot, humid summers can be hell for someone with MS, who feels weak and drained all the time with no energy for anything.  It is important to keep cool.  Air conditioning would be very nice if you could afford it.  A fan in every room is a second best.  Dry heat seems to be tolerated by people with MS, and many enjoy being in not too hot sunshine, as long as there is no humidity.  Where you choose to go for your holiday becomes an issue.  It may be better to go on holiday off-season, when it is not too hot.  Be very careful with hot baths.  They can bring on MS symptoms very rapidly, as well as leaving you weak.  These symptoms tend to go away once the effects of the hot bath have worn off, but are unpleasant nevertheless.  They can be avoided by making sure that the bath water is comfortably warm, but not hot. 

Over-Exertion

One of the problems about having MS is that many people - particularly those who are young and energetic - want to prove that they can still do all the things they used to.  So they over-compensate and make themselves ill by over-exertion.  Young people with MS who have not told their employer, their workmates, or even their family, are more at risk of over-exertion.

Driving a lorry from London to Scotland in one haul may be fine if you are a fit and healthy man, but it’s simply asking for trouble if you have MS and are hiding it from everyone.  The ones who seem to suffer most from over-exertion are wives.

Women stricken with MS have, in my view, the toughest time because in our so-called emancipated society they are often expected to do three full-time jobs: go out to work, run the household, and be a mother.  The ‘energy cake’ when you have MS is not enough to fulfil even one of these roles properly, let alone three.  I have received letters from wives which have made my blood boil.  Even though the wife has MS, the husbands still expect them to cook, clean, look after the children, and go out to work to help earn a living. 

Time and time again, women in that situation are called ‘lazy’ if they do not visibly do all the chores.  A woman with MS may feel so weak after a day at work she is only fit to slump in the armchair.  Not wanting to be labelled ‘lazy’ or ‘selfish’, many of these women force themselves to cook a meal, clean the house, do the laundry, the ironing, or whatever.  The kinds of chores which women are expected to do are particularly energy-consuming.  The easiest place to suffer from over-exertion is in the home.  Fatigue is the likely result. 

Many women suffer this kind of unfair treatment from their families because they may look perfectly O.K.  The ‘invisible’ symptoms of MS, such as fatigue, are not obvious to other people in the same way as a limp or a hacking cough.  Continual over-exertion such as this can only lead to trouble; worsening symptoms are almost inevitable as there is no let-up in the constant strain. 

The workload simply has to be shared somehow with other people, or lessened, or both.  This kind of situation may need relationship counselling, and/or help from the social services, if you can get it.  MS will almost certainly mean altering the traditional roles in your household and it will take time to make the adjustments. 

Work

Over-exertion is often tied up with the work you do.  Many people find that their job is simply not compatible with having MS.  For example, a surveyor could not continue to climb up on roofs or balance along parapet walls.  Two journalists could not carry on rushing about everywhere and meeting tight deadlines; a pilot had to forget about flying planes.  The list is endless. 

Once you have MS, your ‘energy cake’ is much smaller, and you have to choose how you are going to share it out.  It probably means setting your sights lower.  It will probably mean watching your contemporaries being promoted over your head, when you can see that - if things had turned out differently - it could have been you being promoted. 

One of the most painful things about MS is that it does strike at young people in their prime.  This is just the age when people are aiming to make it in their chosen career or walk of life.  It hurts to see success, and probably fortune too, being snatched from your grasp.  This is particularly so at a period when someone’s whole identity - male or female - is so bound up with the work they do. 

Even if you succeed in not getting worse, even if you successfully stabilise the disease, you will probably still have to sacrifice some work.  If your present job is strenuous and stressful, you will have to weigh up whether the price you will have to pay in fatigue is worth it.  If you carry on working full-time in a demanding job, you may be too tired to do anything else when you come home.  The idea is probably to find some suitable part-time work, or change to a less demanding job which is full-time, even if it means stepping down a few rungs in the career ladder.  You do not have to give up work altogether because you have MS.  It is likely to be pretty damaging to your self-esteem and self-confidence - as well as to your pocket - if you do.  Try and find the right balance between work and the rest of your life. 

Over-Tiredness

If you feel tired (not the same as fatigue) then rest.  If you don’t rest, it may turn into fatigue all too easily.  A rest some time during the day is highly desirable.  If you can manage to rest twice a day so much the better.  It will feel like recharging your batteries.  You don’t have to go to sleep.  Just lie down and relax completely.  You could read a book, or meditate.  You will feel more relaxed if you put your feet up. 

Sleep

If you are going short of sleep, you are bound to feel fatigued.  Try to go to bed early.  Tell yourself you will be in bed by a particular time every night, with perhaps one late night a week.  This means being firm with other people.  If you are invited out anywhere, politely insist on leaving when you feel it is time for you to go.  It will doubtless happen that your host or hostess will make you feel guilty about leaving so ‘early’ but guilt is better than fatigue.  If you can manage it, get some sleep during the day.  An hour or so after lunch is usually the best time.  Some symptoms of MS go away almost miraculously after a good sleep. 

Eating

A woman with MS had some invaluable advice which works like magic in some instances of fatigue - eat and drink plenty and often.  Being ‘weak with hunger’ has a particular relevance to MS people.

The symptoms of that unnatural fatigue (what some people call ‘feeling MSy’) creep over you when you begin to feel hungry, and get worse as you get hungrier.  If you go without breakfast, you could be feeling deathly by mid-morning.  Of all the things that bring on fatigue, this is the easiest to overcome. 

At home, you have instant access to the fridge or larder (stick to nutritious snacks, not junk food).  Problems arise when you go out.  Some people serve dinner late and your legs could be like jelly by the time the soup is served.  Far better to eat a little something before you leave the house.

If you’re going on a journey, take emergency rations with you.  There’s no need to stuff yourself, or get fat; simply plug the hole in your stomach before you get really hungry and weak.  But don’t make the mistake of eating sugary foods, as your blood sugar level will rise sharply, then dip.

Blood Sugar Levels

In fact a common cause of fatigue is hypoglycaemia - low blood sugar level.  Unless you are aware of hypoglycaemia, it would be easy just to say ‘I feel fatigued’ without realising the cause - or the solution.  The way to avoid hypoglycaemia is to eat complex carbohydrates (e.g.  whole grain pasta) little and often.  This gives a slow release of glucose into the bloodstream.  The worst thing is to eat sugary foods, for the reason given above.

With acknowledgements to:

Judy Graham for permission to publish this extract from her book

‘Multiple Sclerosis The Self Help Guide’ -

Fourth Edition, published by Thorsons.