Physiotherapy

How can Physiotherapy help people with CFS/ME?

Physiotherapy is frequently recommended to help people with CFS/ME to gain strength and feel better.  But what does a physiotherapist do?  What is Graded Exercise Therapy?  How can it help?

What might a physiotherapy programme contain?
Most physiotherapists ('physios') and occupational therapists ('OTs') working with CFS/ME will be able to help in the following areas:

• Set goals that are important to you, eg walking to school, seeing friends.
• Find a daily routine: helping to get the right balance between activity and rest ('pacing').
• Find a baseline of activity: what physical activity you can do regularly without causing problems.
• Increase physical activities to help improve strength: working on daily tasks, eg getting up and dressed, or possibly physical exercise like walking to the shop.
• Understand and control symptoms better.
• Investigate sleep and support you to improve the quality/timing of sleep.
• Manage the difficult or upsetting times.
• Talk with your school or college: help plan lessons/homework, deal with exams.
• Help your family and friends to understand and support you.

How is Physiotherapy different from Occupational Therapy?
In the specialist management of CFS/ME, physios and OTs often work in similar ways.  The main difference is that physios may help to build physical strength by working out a physical activity programme with you, or a Graded Exercise Therapy (GET) programme.  They may also help with posture, or maybe teach you stretches to help your muscles feel more comfortable and flexible.

Myths and Realities of Graded Exercise Therapy
Physical exercise may seem a rather odd concept for someone who has CFS/ME.  Doing PE, riding a bike, or playing football may seem a bad idea if you are struggling to carry out simple tasks such as dressing yourself.  However, consider this: as well as feeling exhausted, does getting dressed also make you feel a bit breathless?  How about having a shower, walking to a shop, or helping out at home?  Have you considered this might be exercise too?

A bit of history
Exercise has been used for many years to help people with fibromyalgia, multiple sclerosis and other neurological conditions.  Research has shown that carefully graded exercise can also help CFS/ME in adults, although no research has yet been published for children and adolescents.  However, experience suggests that Graded Exercise Therapy ('GET') is helpful so long as it is done properly and supervised by an appropriate healthcare professional.  The Chief Medical Officer's Report 2002 recommended GET as an effective therapy, and GET has helped many people feel better.  Other treatments recommended in the CMO report were Cognitive Behaviour Therapy ('CBT'), and pacing.  CBT has a good deal of adult research evidence, and while Pacing does not yet have such good research evidence, many patients say it makes them feel better.

What is Graded Exercise Therapy?
GET is the use of regular, physical activity/exercise (and consider exercise in its broadest sense, including lifting a finger or rolling in bed) to aid recovery from CFS/ME.  As a physio working purely with CFS/ME, I have seen exercise significantly improve energy levels, reduce pain, improve sleep, and lift spirits.
GET should always start at the point you are at now, whether you spend most of your time in bed or whether you are more active.  What you do in GET is really up to you and what you want to achieve.  If you would like to be able to get out of bed, GET could help to improve your strength and movement to allow you to do this.  If you would love to be able to walk round the house or go to school, GET would aim to help you gradually build up your strength and fitness to achieve this.

An effective GET programme will be discussed between yourself and a physiotherapist, and should take into account what you can do now, as well as other important things like sleep and setbacks. 

Benefits of exercise for CFS/ME
There are different reasons as to why GET may be helping some people to get better.  Some factors will work for one person, whilst other factors may work for another person.  Exercise can work on many things that are thought to delay people with CFS/ME getting better (called 'maintaining factors'), such as:

• Improve physical strength.
• Improve physical fitness.
• Help you to do more activity in your day.
• Improve symptoms, eg fatigue and muscle pain.
• Improve sleep.
• Improve ability to think more clearly ('cognition').
• Help you to feel more relaxed.
• Create a sense of achievement.
• Improve relationships with friends and family and enable you to do things together again.
• Control your weight and feel better about your body.

Can exercise make me worse?
Any activity that is too difficult for your body can increase symptoms and make you feel worse.  To ensure that this doesn't happen, it is essential to start activities at a low level and then build up very gradually.  When you start at a level you can easily manage (even on your worst days) and build up slowly at a rate that is right for your body, symptoms are controlled and kept to a minimum.

Action for ME did a survey that showed that lots of people felt worse after exercising, but it is now thought that this was because they started at too high a level, progressed too quickly, or tried an exercise programme by themselves or guided by an inappropriate person.  Some people find it hard to manage the routine of GET, or become concerned about feelings of fatigue or stiffness with exercise, and stop the programme without first working out if anything can be changed to make it work better.

What is the difference between graded activity and graded exercise?
A physical 'activity' is often exactly the same as an 'exercise'.  The main difference is that exercise is 'aerobic' activity, ie it causes an increase in heart rate and breathing rate, and hence will improve fitness.  It is important to realise that a GET programme often starts off with physical activities that are not necessarily aerobic exercise.  Only when these activities can be achieved for a reasonable length of time is the intensity very gradually increased to create an aerobic effect.  For example, a walk may at first not cause a significant increase in heart rate if it is very slow, but the pace of the walk can be increased carefully and slowly to gradually improve fitness as well.  If someone is more severely affected, rolling, sitting up, or moving arms and legs gently in bed might be the starting points.

What are the main principles of GET?

• Gentle stretches are often a good start, as these can help muscles to feel more comfortable and help prepare them for activity.  You might work with your physio to plan a stretching programme even before you look at adding activity.  Some people find gentle yoga stretches particularly helpful. 
• Talk to your physio about the activities that are really important to you, or things that you really need to do in your day.
• Activity is started at a level that you know you can manage every day, even on your bad days, on at least five days out of seven.  If it can't be done every day, then the starting level is too high.

What activity should I choose?
The key to this decision is to choose an activity that you can do, and one that you want to do.  Many people start with walking because it is one of the most important activities we do in our lives.  Those interested in sports might like cycling or swimming.  Those who struggle to walk or get out of bed might start by moving their head or arms/legs gently in bed, or perhaps rolling over once an hour. 

Once this can be done regularly (this should feel OK because the level you choose should be fairly easy), the length of time you do this activity for can be increased slightly.  The increases are very small, eg a five minute sit in a chair becomes six minutes.  An increase from five to ten minutes would not work, as this is an enormous 100% increase.  Our bodies tend only to be happy with increases of around 20%.

Getting started might seem difficult, possibly creating some feelings of stiffness or fatigue.  After a few days of maintaining the activity at this new level, these symptoms usually feel better as the body changes and gets stronger.  Gentle stretches can help loosen off any stiffness and keep you supple, especially if you do them after a warm bath. 

Keep to this level of activity until you are used to it and it feels OK.  This means aiming to do it when you're not feeling so great.  Remember: this should be fairly easy as you chose a level that was OK even on your bad days, and - and this is sometimes the really hard part - it's also about not going over this planned level on your better days.  This is really important because if you go over your planned level and you feel awful the next day, then you can't continue on with your programme and get stronger. The programme needs to be regular for you to get better.

Once it feels OK another small increase in time can be added.  When you can do an activity for a good length of time at a comfortable pace, eg strolling for 20-30 minutes, it is then helpful to start working your body a bit harder.  This might mean walking slightly faster for part of the time.  This process may take anywhere from weeks to months - the process is slow but steady.

REMEMBER: patience and keeping your brakes on may be just as important as increasing activity.

Your physio might also encourage you to strengthen your muscles, possibly through a set of exercises.  These need the same caution - start low, progress slowly.  You might prefer to do other activities that will help you to get stronger, for example helping out with some cooking, or maybe taking care of some plants by watering them every day.

What do I do if I have a setback?
During a setback, it is useful to keep on doing as much activity as you can still manage.  This is to avoid the weakening and tightening of muscles and the reduction in fitness, which can occur surprisingly quickly.  It can be helpful to use other strategies during a setback, such relaxation techniques, or doing gentle stretches, and working out what may have contributed to the setback.  Gradually and carefully returning to normal activity levels is then important to make sure your strength picks up again.  If you find that you cannot return to normal activity levels, there is likely to be a reason for this.  You should seek the further advice of your physio or doctor.  Common reasons include difficulties sleeping, stress, feeling low in mood, negative or worrying thoughts or an infection. 

Can exercise cause a setback?
As with any physical activity that you do, if the exercise level is too high or is increased too rapidly for you to cope with at first, it may cause a setback.  That is why it is so important to set that level at a pace you can easily manage, and not go for it too quickly.  If you do have a setback after exercise, you may need to find a different starting point for you.  Everyone is different; it is a case of trial and error, and can take a while to get it right.

Getting the best out of physiotherapy
Your programme will only work if you tell your physiotherapist honestly how you feel and how you are getting on.  You should always tell your physiotherapist if:

• Your programme contains anything you are not keen on.
• You are finding your programme really difficult.
• You are worried about your symptoms, or about what it feels like to exercise.
• You are finding something painful and it is getting worse.
• You are not sure why you are doing something.
• You don't understand what the physiotherapist is saying.
• There are problems or things stopping you from doing your programme, eg homework, feeling fed up.

You may find keeping a diary of questions and answers helpful, as well as a record of your programme.

How to find a physiotherapist
Your GP or specialist should be able to refer you to a physiotherapist.  Local ME Groups might know of one in your area.  Also, keep an eye out for the new CFS/ME services that have been running around the country from April; your GP should be able to refer you and apply for funding.  You can also try the Chartered Society of Physiotherapy web site www.csp.org.uk where you can find links to national physiotherapy services or practitioners.  GET is also being examined on the PACE research trial, being conducted over the next five years.  For further information about PACE you can email pace@qmul.ac.uk.

Article last edited on Thursday 12th August 2010                          Printable Version