In addition to these treatments you may find the lifestyle advice below helpful.
Boom or Bust! (Time Based Pacing)
Pacing is an important way of controlling CFS symptoms. It involves balancing periods of activity with periods of rest. Pacing means not overdoing it or pushing yourself beyond your limits. If you do, it could slow down your progress in the long-term. Over time, you can gradually increase your periods of activity, while making sure they are balanced with periods of rest.
Movement is essential for the health of all body systems and processes. It is the principle body function that is affected, altered and sometimes controlled by fatigue and pain.
Movement will always benefit the tissues. – ‘Motion is lotion’.
If you’ve been in exhausted and in pain for a long time, you might know you need to move, but feel trapped by the fatigue and pain. Then you find the less you do, as your body gets out of condition, the less you are able to do.
Do you recognise this scenario?
You begin a project it is very hard for you to stop working on it before it’s completed. You work on the project non-stop despite the onset of pain. BUT as a result of “working through” the fatigue, your level of fatigue becomes higher and higher, resulting in severe fatigue and possibly pain that requires you to rest for an extended period, even days, before you are able to work again.
As the fatigue and pain decreases, you may then feel you have to work extra hard in order to catch up on time lost. You do everything on your “to do” list on that day, only to end up with more fatigue and pain for days afterwards.
This cycle of work, fatigue and rest is very common for individuals who have chronic fatigue syndrome - see below.
Boom or Bust Cycle
One method for breaking this cycle is called time-based pacing. This is a process in which activity breaks are based on time intervals, not on how much of the job is completed. (see figure below).
Those people who are reluctant to pace themselves because they think they can’t afford to “slow down”, that approach is false economy. By taking breaks before the fatigue and sometimes pain begins (not after it gets bad), you will be able to return to activity sooner and will actually get more done. By using time rather than fatigue as an indicator, you will not need long periods of rest to recover from pain because fatigue flare-ups will be much less likely to happen.
Professional athletes use pacing techniques by taking regular water breaks on the side lines in order to perform at peak efficiency. Their coaches know that if the players are kept in the game until they are tired, then they will not be performing at their best. The same reasoning applies in chronic fatigue management.
Guidelines for Time–Based Pacing
Using the Activity Pacing Worksheet try pacing a few activities in the coming week. Follow these guidelines:
When practicing pacing, keep the following in mind:
Be patient and persistent
Pacing needs to be consistent in order to be an effective pain reducing strategy.
As you get better at pacing, try expanding the activity / rest schedule to other activities in your day and slowly build up the active time. You may find that incorporating mini-sessions of progressive muscle relaxation, deep breathing, or visual imagery into planned rest periods at work or at home are helpful.
Other general pacing techniques include:
Other self-help techniques managing the quality of your quality of life and function.
Things to avoid.
Diet eat small, regular meals, it may help the nausea and reduce bloating. Eat a well balanced diet, and avoid things which you feel you may have a sensitivity towards.
Managing your sleep
It is likely you will be given advice about your sleep. Any changes to your sleep pattern (for example, having too little, or even too much, sleep) may actually make your fatigue worse. This includes sleeping in the daytime, which should ideally be avoided. Any changes to your sleep pattern should be done gradually. (see insomnia section)
Rest (rather than actual sleep) is very beneficial. You should introduce rest periods into your daily routine. These should ideally be limited to 30 minutes at a time and be a period of relaxation.
Relaxation can help to improve pain, sleep problems and any stress or anxiety you may have. There are various relaxation techniques (such as guided visualisation or breathing techniques) which you may find useful when there are built into your rest periods.
Depending on the severity of illness, other support may be needed. For example, carers, nursing support, equipment and adaptations to the home to help overcome disability.
If you are employed, your doctor will be able to advise you about whether you should take time off work. If you take time off work, when you are ready to go back to work, it may be that you need to work doing slightly different hours or even with different duties.
Managing setbacks (relapses)
It can be common to have setbacks when symptoms become worse for a while. These can have various triggers - for example, poor sleep, infection or stress. There are number of strategies to help you manage set-backs. These may include relaxation techniques, talking with your family, and maintaining your activity and exercise levels, if possible. However, it may be necessary for you to reduce or even stop some of your activities and increase the amount of rest you have during a setback.
Following a setback you should usually be able gradually to return to your previous activity level.
What is the outlook (prognosis)?
In most cases, the condition has a fluctuating course. There may be times when symptoms are not too bad, and times when symptoms flare up and become worse (a setback).
The long-term outlook is variable: