Chapter six
PHYSICAL CARE, REST AND EXERCISE PROGRAMME (PREP)
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Chapter sixPHYSICAL CARE, REST AND EXERCISE PROGRAMME (PREP) |
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The benefits
Get advice from the experts
Prescribed exercises — 'use it or lose it'
Exercising at home
Fitting muscle and joint exercise into everyday activities
Rest and relaxation
Joint protection
Self-management programmes
Further information
"Exercise is another must in getting joints going. Even if it is only possible to do two or three of one exercise each day, gradually build it up and keep a chart of your progress. After about three weeks you should see some improvement."
So says Anne Ryman, who's lived with RA for several years. Jacqueline S is now in her 50s, but has lived with it since her 20s. Careful balancing of rest and exercise has paid off:
"If your doctor says rest and don't worry please try and do just that. Rest is vitally important as is exercise but try to strike a happy medium. Don't too do much of either."
"I have always been very lucky in that I am not deformed in any obvious way. My hands and wrists give me a lot of trouble and I have limited movement in my wrists but I've worked hard to keep my fingers straight. My legs are also straight for the same reason, hard work and exercise… It's only when I move that it becomes obvious I have anything wrong with me but if I move slowly and keep myself straight people don't notice. It's difficult getting up after a meal in a restaurant or getting out of the car. After even a short journey it takes me a while to loosen up. My very worst time of day is getting up in the morning. What a blessing a hot shower can be."
A good 'physical care, rest and exercise programme' ('PREP') is a highly essential item in your Outwit Arthritis Kit. It won't cure your arthritis, but it can make a vast difference to your muscles and joints, and to your ability to cope. Don't think of it as 'just' a half-hour exercise programme in the physiotherapy department. Prescribed exercises should be done regularly at home too, as an important part of your daily routine.
Learning the right sort of exercise and how to balance it with rest can even help with the fatigue of inflammatory arthritis, as Jane Robinson (who has lupus) discovered after following an NHS Expert Patients self-management course (see later). Jane was one of the runners-up in the 2005 Eular Edgar Stene Essay Competition:
"with the use of action plans I started to do more exercise… To start off with it was just a few stretches and then a few five minute walks. The techniques I learnt during the programme helped me to improve my eating habits, I started to drink more water and soon I was walking, swimming or doing a series of stretches every day…"
"The combination of healthier eating including drinking plenty of water and the exercise has really helped me control my fatigue. It occurs less often and when it does make an appearance I recognise the signs more quickly and will do something about it rather than allowing the fatigue to take control over my life … I still have to motivate myself to exercise, especially when I am really busy with the rest of my life but I soon know if I haven't been doing enough." (the full essay is on the LuPUS Message Board< /a>)
ARC's booklet Fatigue and arthritis agrees:
"Yes, even exercise can help fatigue! People with arthritis often become unfit because of the impact of the disease, but some of the fitness can be restored with the right sort of exercise. The exercise must be done slowly at first, gradually increasing the amount and the time spent on it. Gradually you will feel an increase in well-being and strength and energy. If you are unsure about this speak to your physiotherapist."
PREP principles really apply to almost everything you do. Think of 'exercise' as moving your body or any part of it; not using your body or part of it as 'rest'. Relieving strain on a joint in some way (for instance by using splints or changing the way you use it) is also a form of 'rest' for that joint. You'll need to learn (with helpful advice, and time) how to rest and exercise correctly, and how best to balance the two.
Good joint protection/joint care is important. Be constantly aware of how you use (and how not to abuse) your joints in everything you do, all day long. Joint protection doesn't mean you should stop using your joints, just that you should use them differently.
Even if all you're doing is sitting still, how you sit matters and affects the bones and joints and muscles where the arthritis is lurking. So too does something like the way you get up from a chair, walk, stand, open a jar, hold a saucepan, carry a bag, use a pen, deal with bending, reaching, gripping, and so on and on. Like learning to read or write, with time it'll become second nature, so persevere. More about joint protection later.
Your GP or rheumatologist may help with some PREP advice, but the specialists are the physiotherapist and the occupational therapist (OT). Ask for a referral as soon as possible after diagnosis, and before problems set in. Therapists (especially those attached to rheumatological units) can do a lot to help you keep going and to prevent damage and deformity developing. Self-management courses can help, too. More about those later.
Listen to a physio and an OT who specialise in rheumatology. First, Ron Harrison, former superintendant physiotherapist at the Royal National Hospital for Rheumatic Diseases, Bath, says:
"Twenty years ago, people who came to us for treatment were quite passive. These days, we work with patients, tell them what to expect and devise a self-care regime they can do at home. Regular exercise is very important — especially with rheumatoid arthritis and ankylosing spondylitis. It helps prevent the joints from stiffening up. You need to build an exercise routine into your daily lifestyle — just as you clean your teeth. If you move every joint properly, every 24 hours, they will stay mobile. We can advise you what to do."
"You also need exercise to maintain muscle strength. If a joint flares up painfully, you will tend to stop using that part of the body. What you don't use you might lose. So we devise exercises that keep muscles strong until the flare-up goes away."
"We also advise you how to rest. If you rest a joint in a bad position, permanent stiffness or deformity can set in quickly. You need to adopt the right habits from the start. Sometimes we devise splints to ease pain or hold the joint in the correct position." (Practical Health magazine, Aug/Sept 1987)
Heather Unsworth, former senior OT at Odstock Hospital, Salisbury, Wiltshire, says:
"People tend to think occupational therapists just teach you to weave baskets, but we do much more. We help you find ways to cope with ordinary everyday tasks. We look at you as a whole person with an individual lifestyle, and we devise ways for you to do what you want, without straining or damaging your joints. Our main aims are to prevent pain and maintain function."
"It's important to learn to recognise your own personal body signals — the pains that tell you you're doing something harmful. We analyse the tasks you want to perform and find solutions to the problems. We teach you to do the same for yourself, too."
"We are also the experts on aids and adaptations, from small gadgets to structural adaptations in the home. Through us, you can apply for help with the costs. Here again, we are trained to look at you as a whole person, with a mind as well as a body. Our job is to design ways around, so you can do things that matter to you." (Practical Health magazine, Aug/Sept 1987)
You can learn more about OTs and what they do from 'How can OT help me?' on the the College of Occupational Therapists website.
Do seek 'personalised' advice and only from the experts. It's wrong to generalise (as some books do) about 'exercises for arthritis'. Each type of arthritis/ rheumatic disorder requires a different approach, and each person needs a different sort of PREP to fit in with their body and their lifestyle.
The basic rules differ in each condition. Take osteoarthritis (OA), rheumatoid arthritis (RA) and ankylosing spondylitis (AS), for instance. In OA general rest isn't usually necessary since it normally affects only individual joints, and by the time a joint's become painful and worn-down it's usually better to keep it (and the muscles) going than to try to rest it too much.
For someone with RA, however, rest is very important, especially during a flare-up, though the joints should also be put through a full range of movement (ROM exercises) at least once a day (more, once the flare-up has eased). 'Pacing' and 'planning' of activity is important too, with periods of rest and avoidance of unnecessary stresses and strains.
In AS the emphasis is on keeping going. Exercise and mobility are crucial. It's important to keep joints moving, because if they're allowed to rest too much they can seize up completely. Someone with AS will be taught an extensive range of exercises and must keep at them each and every day (look back at AS in chapter 3). ARC's booklet Ankylosing Spondylitis stresses: "the motto for treatment which all patients should remember: it is the doctor's job to relieve pain, and the patient's job to keep exercising and maintain a good posture."
Special rules apply for anyone who has had a replacement joint operation. Check with the physio, OT, surgeon or doctor which exercise techniques to avoid and which are safe. For instance if you have a hip replacement, stick to low impact exercise like walking, not high-impact running or jogging, and be very careful never to bend too far when doing range of movement exercises for the leg as you risk dislocation — the knee must never be lifted higher than top-of-thigh height and do not do any exercises where a leg crosses across the mid line of the body.
As we don't all have easy access to good physios and OTs and self-management courses, and even when we do it's not always easy to remember all the dos and don'ts, you'll find more information to help listed at the end of this chapter.
With these you aim, gently, to put all your joints through their full range of movement (ROM) at least once a day. Though physiotherapy can't cure, it can strengthen weakened muscles, increase your range of movement and ability to do things and become more independent. By working to keep joints mobile you'll also help avoid putting too much strain on other joints which might later be affected by the arthritis. The feeling of doing something to help yourself is good too, and in itself a form of 'natural pain control'.
Muscles tend to 'go into spasm' to try to prevent a painful joint moving, but unfortunately are then in danger of weakening and wasting, which increases stresses and strains in the joint. Physiotherapy aims first to relieve muscle spasm (eg by easing or numbing the pain, with heat or cold) and then gradually to restore pain-free movement. Strong muscles will help joints 'take the strain'.
Some exercises are 'passive', where someone else moves the joint for you and you don't use your own muscles. Some are 'isometric' where you work on the muscles only, without moving painful inflamed joints at all. Others are 'active', where you do move your joints, using your own muscle-power, or have some assistance — 'assisted active'. Your physio will prescribe a programme appropriate for you to follow regularly at home.
Exercising at home
Fitting muscle and joint exercise into everyday activities
Prescribed exercises can also be fitted into ordinary activity. For instance standing at the bus-stop or sitting on an office chair you can work (unnoticed) on strengthening your buttock muscles and 'quads'. While watching TV gently exercise your fingers by squeezing and releasing a spongy ball. Muscle movements are a natural part of housework (gentle) and gentle gardening too. Ask your physio and OT for other tips. You'll get plenty of tips too on self-management courses.
"All joints need to be put through their natural range of movement daily, preferably a few times a day, and ideally this should be incorporated into your daily routine. Any exercise that is incorporated into daily life is much more likely to happen."
So says Jasmine Jenkins in her book Living a full life with rheumatoid arthritis ('Expert Patient's Guide', How to Books Ltd, 2005). Jasmine is both a fully qualified OT and a Mum who's had RA since her 20s, so her advice and ideas are based on personal and professional experience. The wide-ranging book includes excellent chapters on 'The importance of exercise and good posture' and 'How to protect your joints and reduce pain', for instance exercises for the chair, at the kitchen sink, on the bed, for the bath, for the car, standing exercises, exercise at the table, yoga exercises, in a swimming pool, etc.
Watch your posture! Slouching strains the joints and can lead to deformity. Ask for advice on the best standing, sitting, lying and working positions. Stand as if the top of your head were linked to a star! Some people find the Alexander technique helpful, which teaches you to be aware of your body and to think about the way you carry out physical actions. Or how about Pilates or Tai chi? Jasmine Jenkins lists lots of good posture guidelines for standing, walking, lying down, working at a worktop or desk, for instance:
"Do not walk with the head down. Ensure the head is in a balanced position as in standing." Living a full life with rheumatoid arthritis ('Expert Patient's Guide', How to Books Ltd, 2005)
Get advice from your doctor or physio about any sports. Generally speaking, swimming, in warm water, is excellent exercise. The buoyancy of the water takes strain off joints and lets muscles move easily and as fully as possible. Hydrotherapy is prescribed exercise in very warm water, supervised by a hydrotherapist/physio, and very good it is too. ARC has a free leaflet Hydrotherapy and arthritis (downloadable or in print). Some local Arthritis Care and NASS groups and other disability groups (eg BackCare) also run regular hydrotherapy sessions.
Ask your physio if there are any gentle exercises you can do while having a bath? Your physio might also give the OK to some cycling, or gentle dancing; even walking can be good. But avoid anything that jogs or twists joints, or subjects one or more joints to repeated pressure or strain (so not jumping or weightlifting!).
It's important not to over-do things, but often difficult to judge when to stop, especially if you're enjoying yourself. One rheumatologist advises:
"In general, if exertions and exercises make joints more painful or swollen for an hour or so afterwards, this is permissible, but if the pain or swelling is still present two or more hours afterwards, the activity has been too much, and if things are still worse next morning, far too much!"
"…Feet and knees affected by rheumatoid arthritis can be improved by walking on even ground for suitable periods but worsened by standing for hours on hard surfaces or walking for long distances over rough, hard or uneven surfaces."
"What is 'too much' in rheumatoid or any other inflammatory arthritis differs for every patient, and it is best to keep to the one to two hour rule mentioned above. If symptoms are worse for hours or days after any particular activity that activity has probably been too much, but a temporary mild aggravation of an hour or two often followed by an improvement in the general state, is not only permissible, but may well prove to be beneficial." (In ARC magazine, summer 1988)
After taking physio and OT advice, in the end it's really up to you to find the correct balance of rest and exercise for you and your body. In chapter 28 two Mums with small babies say how they fit rest periods into the day.
Learn how to relax mentally, as well as physically. Both forms of rest are skills that, once learnt, can help you cope with the physical and emotional challenges of arthritis. (See too chapter 11 on pain, and chapter 14 on simple self-help anti-stress techniques.)
Splinting is another way of resting and supporting one or more joints in a stable position. 'Working' splints (more flexible) are used too, to help prevent deformity while a joint's in use. Heather Unsworth goes into a lot of persuasive detail in her chapter 'Why Splint?' and quotes someone who's 32 and has had RA for nine years:
"I wish I had known earlier just how important splints were in helping to prevent deformity and as a resting aid. I feel that if better neater more comfortable splints had been given to me earlier I would not be so bad now as I might actually have worn them…"
Splint design has improved over the years. You can now even get a glamorous wrist brace in black, designed by Sebastian Conran! Made of cotton and lycra breathable fabric, machine washable, and easily removable with a zip fastener, it comes in black or beige: the 'Wrist Easy' from Promedics. An ARC leaflet on Splints for arthritis of the wrist and hand is in preparation.
Small finger splints are sometimes used to help deal with 'swan necking' in RA fingers. Swan necking is the bending of the top joint of the finger, with the next joint bending in the opposite direction from usual. Usually the splints are made of rather ugly thermoplastic, but there's now a silver jewellery alternative! The NRAS 2005 Patients in Focus award went to a project which worked out a way of getting these 'silver ring splints' made in a local high street jeweller's. The splints are individually tailored to each patient, and s/he has to meet the cost, but they've been very successful with people who've bought them. For more information, see the NRAS webpage and the Ring Splints Project
Neck collars or callipers also help 'rest' joints, relieving them of strain. It's important that any of these devices should fit comfortably. If you're not happy, don't just banish them to the back of a cupboard, but get back to the physio or OT and explain, and see if they can be improved or replaced.
Other 'resting devices' are those which help relieve weight on a joint. Simply using a walking stick can relieve considerable pain and pressure on an arthritic hip, for instance. Worth trying, even if it takes some getting used to (see chapter 24).
There's another form of 'rest' you might be prescribed. You might be asked to go into hospital for a 'rest' if you've been having a particularly bad time. In fact it's unlikely to be 'just rest', but a programme of carefully planned rest and relaxation combined with drug treatment and physiotherapy.
Re-think the way you use your joints, and body generally. How you do things is important. Joint protection doesn't mean you should stop using your joints, just that you should use them differently, finding alternative ways of doing everyday tasks, to reduce strain on your joints, reduce pain, and to help lessen joint deformities. For instance, pick up the kettle with two hands to spread the load rather than one hand.
Both physio and OT can advise you, and there's an excellent free ARC booklet Looking after your joints when you have arthritis (downloadable or in print) for people with different types of inflammatory arthritis, and for people with osteoarthritis, especially of the hands.
Self-management programmes (see later) usually include joint care. 'How to protect your joints and reduce pain' is a chapter in Jasmine Jenkins' Living a full life with rheumatoid arthritis ('Expert Patient's Guide', How to Books Ltd, 2005). The books I mention at the end of this chapter will help too, and the 'short anatomy lesson' in chapter 2 might help with understanding why joint care's important.
The first principle in joint protection is to conserve your energy. Rethink, with your OT's help if necessary, how you use your time and limited 'energy rations'. Chapter 22 may help, too. 'Pacing and planning' at work and at home saves wear and tear on nerves and joints, and helps conserve energy and avoid unnecessary fatigue.
Think before you act! Decide on your priorities and do only what is absolutely necessary. Look at the replanning exercise in chapter 22 which focuses on three key questions to ask yourself: 'eliminate? — facilitate? — delegate?'
Divide essential activity into periods of 'work' and 'rest', and make yourself take the planned rest, eg half an hour's housework, then 15 minutes rest. Re-think how you look at tasks — for instance instead of thinking 'there's a pile of ironing to be done', think 'I can afford to spend half-an-hour ironing, then I must stop'. Work out what's really essential and save your energy rations for that. Try to avoid the great temptation of over-doing things on your 'better' days. Heather Unsworth puts it beautifully: "Today's over-enthusiasm is tomorrow's 'OUCH'!"
Jasmine Jenkins defines the two other main principles in joint protection for RA:
A static position is one that uses the same set of muscles continually rather than altering the groups of muscles used. You need to keep changing position to avoid straining particular joints. Stretch out your ams and legs from time to time too, to help prevent them stiffening up.
Weakness in joints, particularly in the wrist and hand, can cause you to use them in abnormal ways, which can lead to deformities. You can learn deformity-avoidance techniques to discourage and slow down the process. For instance rest a book on a table rather than hold it up in one hand; use cutlery and kitchen utensils with chunky handles rather than ones that have to be gripped tightly. ARC's booklet explains how and why joints can become deformed, and gives lots of deformity-avoidance tips (with illustrations). So too do Jasmine Jenkins and Heather Unsworth in their books.
Some joint protection advice will differ according to your particular type of arthritis and your particular difficulties, but here are some general tips for someone with an inflammatory arthritis like RA:
"Whatever you are doing remember to change positions frequently. You should not sit at a keyboard for more than 20 - 30 minutes. Stand up and walk across the office, stretch your fingers, etc. This will prevent you getting stiff and will allow you to move more easily." (Living a full life with rheumatoid arthritis, 'Expert Patient's Guide', How to Books Ltd, 2005)
Rethink your environment, with assessment and advice from the OT, and look at all the information and suggestions in chapters 20 - 24. Get the right sort of chair (firm, correct height) and bed (firm, good height, light bedclothes). Get OT advice before spending lots of money — the right solution isn't necessarily the most expensive. Far from it! There are plenty of ways to make life easier, eg gadgets and tricks to help with washing and grooming, using the loo, eating and drinking, sexual activities, baby and child care, aids for the kitchen, cleaning, washing, shopping, writing, reading, phoning, gardening, working, studying, driving, travelling.
Feet, like hands, have many delicate joints which need special care! While physio and OT can give you some advice on foot care, podiatrists are the specialists. Regular attention to foot care can make a real difference to mobility and pain relief, eg through removal of corns and callouses, relief of painful pressure ulcers, advice on shoe choice and posture, work on weakened muscles to relieve strain and deformity in toe joints and advice on footwear, etc. See 'Feet and footwear' in chapter 21.
Re-thinking your life with arthritis, working out how to balance activity, exercise and rest, and joint protection, are all techniques you can learn on a self-management programme, led by people who themselves have become 'expert patients' through personal experience of arthritis. The programmes focus on building self-help skills, sharing experiences and support, and helping people feel more in control.
Arthritis Care runs several self-management programmes, for instance 'Challenging Arthritis', which teaches self-help techniques for people with any kind of arthritis. It's a free programme, running for two hours a week for six weeks. 'You Can Break the Pain Cycle' is another course, running for one half-day. Similar programmes are run elsewhere, some run by occupational therapy departments. At Bath's Royal National Hospital for Rheumatic Diseases there's a group patient education programme for people with lupus or scleroderma. For people with AS, many local NASS branches have regular group physiotherapy sessions.
The Arthritis Helpbook: a tested self-management program for coping with your arthritis and fibromyalgia is a book based on arthritis self-management programmes which were successfully pioneered at the Stanford Patient Education Research Center (formerly Stanford Arthritis Center) in California by its authors, Kate Lorig and James F Fries. It's packed with self-help info, including exercises and relaxation techniques, joint protection tips, and masses of other practical and emotional tips and techniques. Hardcover or paperback, published by Da Capo Press, and regularly reprinted.
Self-management courses for people with long-term medical conditions are also being encouraged and promoted under the government's 'NHS Expert Patients Programme' (EPP), website: www.expertpatients.nhs.uk, where you can search to find a course. Or contact your local EPP team; there's one in each Strategic Health Authority (SHA). A UK-wide internet course has also been piloted for people who can't get to community-based courses.
Skills covered on EPP courses include: