Rest, Pacing and Stress: What Every Chronic Fatigue Syndrome & Myalgic Encephalomyelitis Patient Should Know
Rest and Pacing - Drive your car kindly! It lasts much longer!
"Thou shalt not be thine own worst enemy, but thine own best friend."
Rest is the single most important factor in allowing chronic fatigue syndrome sufferers (CFSs) to get better. An invariable feature of the history is that exercise (mental, physical or emotional) makes the symptoms worse.
Indeed this distinguishes CFS from depression -
However, all CFSs tend to push themselves to their particular limit every day and therefore do not give themselves a chance to get better. This means they have one day doing as much as possible, then three days to recover.
- Exercise tends to improve people who are simply depressed.
- In CFS the desire is there but the performance lacking.
Whilst you are on this roller coaster ride of activity and dives, you cannot hope to improve overall. Energy has to be carefully rationed so that every day is about the same. This is the most difficult aspect of treating CFS, because this is often the very personality that makes people get CFS in the first place.
We now know why CFSs get delayed fatigue - it is because when they use up energy (ATP) faster than they can make it, there is a build up of ADP. Some is shunted into AMP, which is only recycled very slowly, if at all. [Note: Dr. Myhill's 2009 research paper - "Chronic fatigue syndrome and mitochondrial dysfunction" - suggests that in CFS the mitochondria's normal ability to produce adenosine triphosphate (ATP) and recycle adenosine diphosphate (ADP) or adenosine monophosphate (AMP) to replenish the supply is compromised.]
Cells have to make brand new ATP from D-ribose, but this only happens very slowly, 1 to 4 days. In the meantime, cells can get a small amount of ATP directly from glucose via anaerobic metabolism, but this produces lactic acid, which causes many of the muscle symptoms.
Most CFSs compare themselves to what they were like before their illness began. This is hopeless. It is vital to work out exactly how much you can or can't do in a day - and then do less.
Imagine that a normal healthy person has £1,000 worth of energy to spend in a day.
If you start to get symptoms, then you are overdoing things. Often this means you have initially to do less - but with careful pacing you will end up doing more!
- The CFSs only have £100.
- What is more, this has to be spread out throughout the day in such a way that they have £20 "change" at the end. This will then allow recovery to occur.
- Furthermore, you are only allowed to spend a few pounds in one session - then rest.
I also like all my CFSs to have a sleep in the day, even on a good day. Homo sapiens evolved in hot climates where it is normal to have a siesta in the afternoon. Most people experience an energy dip after lunch. Young babies and older people return to this more normal sleep pattern and ill people should do the same. An afternoon sleep is normal! I do!
By resting, I mean complete rest from exercise, visitors, telephone calls, reading, computers, talking, child minding, noise and TV. All the above count as activities which have to be carefully rationed through the day.
• When you rest, lie horizontal because this reduces the work of the heart
(it is much harder work pushing blood round a vertical body, up hill and down dale, than when horizontal and everything is on the flat). Interestingly caffeine helps the body scavenge AMP, so small amounts in green tea, coffee or dark chocolate can be very helpful.
• The second point is to have a proper rest, when you actually go to bed,
regularly in the day, EVEN ON A DAY WHEN YOU FEEL WELL. The fatigue in CFS is delayed. If you push yourself one day, expect to "pay" for it 12 to 36 hours later. So just because you feel well one day, don't overdo things or you will be worse off the next.
• Thirdly, do things in short bursts.
You will be more efficient if you do things for 10 to 40 minutes (whatever your window of time is), then rest for the same length of time. I had one patient who could only walk 30 meters, but by walking 15 meters and resting, then going on again, she got up to walking a mile a day!
• Fourthly, vary your activity.
This applies to the brain as well as the body - listening to the radio or music uses a different part of the brain than watching TV. Washing up dishes (sitting on a high stool, please) uses different muscles than walking.
The first step is to reduce the amount of physical and mental work each day until all days are about the same.
Get the regime tight until you get to a stage when you feel absolutely fine doing absolutely nothing!
The level of activity is then very slowly increased each day on the proviso that you continue to feel well.
The key here is to vary activity. Different parts of the brain and body have to be exercised. One of the most active areas of the cortex is that which is concerned with vision. Processing information from a television, for example, requires much more activity than listening to music. Television needs to be rationed.
Similarly, physical exercise should be done using many different muscle groups and initially should be limited to simple stretching exercises without weights.
The level of physical and mental exercise is very gradually increased. It may well take several months before significant changes are seen. To adjust the level of activity to what is appropriate you have to judge things by the next day. If there is delayed fatigue then you have overdone it. There is a very fine "window" between too much and too little. Straying either way makes CFS worse!
One of my patients has developed a useful technique for rest. Every activity is scored as to whether it is:
- Energy giving (e.g., sleep, lying in bed in a darkened room, meditation),
- Energy taking (e.g., dressing, walking, talking, cooking, cleaning, etc.)
- Or energy neutral (easy reading, easy TV, having a massage, etc.).
Each day is scored in terms of time spent doing each activity and balanced out so energy input equals energy output. Everybody has their own balance. But one can quickly see if too much has been done on any one day, in which case a balancing is necessary. Doing it like this, on a chart, takes the guilt out of resting. It simply becomes a necessity like eating or drinking.
I can recommend Calibre - The Audio Library
- a registered charity providing recordings of books to the blind and print disabled (CFS patients qualify on many scores!). The service is free, the voice on the end of the phone extremely friendly. Contact Calibre Library on: 01296 432 339. [In the U.S. a similar free service is The National Library Service for the Blind and Physically Handicapped
, which offers talking books/magazines and talking book players through a cooperative network of local libraries.]
Once you get to the stage when you have good levels of activity and feel fine, then, and only then, dare you relax the regime.
This of course is a council of perfection - actually nobody does it this way because life has a nasty habit of getting in the way. There is usually a trade off between how you feel and how much you can do. But the business of feeling ill is a disease amplifying process - it can actually make you worse as cells are damaged - so do work hard at pacing.
There is a whole spectrum of CFSs - from those professional athletes who cannot do their marathons in less than 2 hours 12 minutes - to those who are bed ridden. Some CFSs can manage full time work, but very often are operating "on adrenaline" and crash when they give it up.
This crash can last several weeks or months. Many can do some part time work, in which case late afternoon work is the best. Don't try to change the job you are in; never resign or you will lose valuable rights. I am happy to give sick notes, write to companies/bosses, do letters for early retirement, and fill in disability living allowance forms, etc. for my patients. I never used to charge for these letters, but because there is so much paper work now, I make a charge reflecting admin/time costs.
The mitochondrial function test results are very useful to include in these letters, because these give us an objective measure of fatigue. [See Dr. Myhill's recent article with Drs. John McLaren-Howard and Norman Booth - "Chronic Fatigue Syndrome and Mitochrondrial Dysfunction"
- introducing "a biochemical test which measures energy supply to body cells and therefore fatigue levels in people with Chronic Fatigues Syndrome/Myalgic Encephalomyelitis (CFS/ME)."]
If you work to your limit, then you should do very little outside work. Spend the evenings and weekends resting.
The people who get CFS are often those who "burn the candle at both ends." They hold down a demanding job, care for a family and are often active sportsmen/women. I see many top athletes with CFS - professional footballers, cyclists and swimmers, decathletes, many county badminton, hockey, cricket and squash players, and several quality marathon runners. (See "The Ectomorph."
) These people are the very ones who find it difficult to ask favors of others.
- Ask other people to do things.
- Stop being house-proud.
- Get a cleaner and dish washer.
- Simplify your life.
- Accept offers of "meals on wheels" from others.
- Standardize shopping lists so you don't need to think each time.
- Arrange for as much food to be delivered as possible; e.g., have a standing order at the green grocer for fruit and vegetables, with the fishmonger, with the butcher, etc. Many city areas have organic food delivery.
- Have standard menus every week so you don't need to think about what to eat.
- Choose foods requiring minimal preparation.
- Use the internet to order from supermarkets [e.g., www.tesco.com] so that foods are delivered to the house directly - a weekly standard "shopping basket" takes energy to set up but takes the mental and physical effort out of shopping thereafter.
- Take advantage of a washing machine and drier.
- Give up ironing - a nonsensical, energy sapping waste of time and energy. Ironing came into fashion to kill nits and fleas in the seams of clothes and had a purpose once! I don't iron, but then I always was a scruff!
- Do things by the clock. We are creatures of habit and the physical body likes things to happen on a regular basis - you ask any farmer who keeps animals - they thrive on routine. Sleep and eat at regular times and pace activities so you do about the same every day and during the same time slots. I know that life has a habit of getting in the way of this ideal, but as a general principle, stick to it.
I always think life is all about going from one crisis to the next. If every bit of your energy is taken up every day, then you don't have any left in reserve for the crises. This is another good reason not to constantly push yourself to your limit.
The Ten Commandments for Reducing Stress
1. Thou shalt not be perfect or try to be.
2. Thou shalt not try to be all things to all people.
3. Thou shalt leave things undone that ought to be done.
4. Thou shalt not spread thyself too thin.
5. Thou shalt learn to say "NO."
6. Thou shalt schedule time for thyself, and for thy supporting network.
7. Thou shalt switch off and do nothing regularly.
8. Thou shalt be boring, untidy, inelegant and unattractive at times.
9. Thou shalt not even feel guilty.
10. Thou shalt not be thine own worst enemy, but thine own best friend.