A Positive Response To Ankylosing Spondylitis: Guidebook For Patients
A Positive Response To Ankylosing Spondylitis: Guidebook For Patients
A Positive Response To Ankylosing Spondylitis: Guidebook For Patients
This version edited by Dr A K Clarke (RNHRD), Juliette OHea, Karen Irons (AStretch) and Lou Gay (AStretch and RNHRD). Sponsored by an unrestricted grant from
March 2007
Produced by the Royal National Hospital for Rheumatic Diseases (RNHRD), Bath, in association with The National Ankylosing Spondylitis Society.
Contents
Introduction Some facts Treatment advice Leading a normal life Some practical advice Some useful exercises Help from NASS Contact addresses 2 3 9 11 13 15 23 24
Introduction
If you are suffering from ankylosing spondylitis, which well call AS for short, you may well have various questions about the disease. At the National Ankylosing Spondylitis Society (NASS) we have produced this booklet to answer the questions patients most frequently ask. It also contains practical advice on things you can do to self manage the condition. Your family, friends, work colleagues, and even your GP, may also be interested to read it. Further copies are available from NASS free of charge if you need them. As well as the inevitable pain of the disease, AS often generates feelings of frustration and fear. Some people do their best to ignore the condition and even deny that they have it. Our experience, however, shows that people who take an active interest in their condition can positively influence its outcome. Moreover, there are certain exercises that will help reduce the deterioration in your posture and mobility. We have included some examples of these in this booklet. Your physiotherapist will guide you in exercises specific to your individual needs. Thousands of our members have benefited from exercise and we hope you will, too. To keep fully up-to-date on treatment and issues related to AS, you will certainly find it worthwhile joining NASS. There are full details about the Society and its services at the back of this booklet. We hope you find this publication useful. Above all, we wish you well.
7 CERVICAL VERTEBRAE
12 THORACIC VERTEBRAE
5 LUMBAR VERTEBRAE
Jane Skerrett
Director of NASS
SACRUM
COCCYX
Is AS common?
AS affects approximately 1 in 200 men and 1 in 500 women in Britain with varying levels of severity of disease.
Treatment Advice
Medication
There is no cure for AS, however non-steroidal anti-inflammatory drugs (NSAIDs) and pain killers will help to reduce pain and improve your sleep and general well-being. Over 80% of people with AS take NSAIDs and/or pain killers to reduce inflammation and relieve pain and stiffness. For people who experience side-effects with NSAIDs, simple pain killers such as paracetamol may be effective. For others, especially those who suffer from inflammatory bowel disease (Crohns disease and ulcerative colitis) or peripheral joint arthritis, a disease-modifying antirheumatic drug like sulphasalazine may be required. In those people with severe AS a new type of treatment is now available. It is called anti-TNF or Biological treatment and is given by injection. It is only offered to those with the worst forms of AS. But drugs are only half the answer. Appropriate exercise is crucial to managing your AS. The drugs should enable you to carry out exercise with less pain.
Physiotherapy
This can greatly influence the outcome of your AS. A physiotherapist will teach you an exercise and stretching routine for daily use and will remind you to be aware of your posture. You will also learn how to increase the range of movement of certain joints, particularly spine and hips. It is important to keep your muscles strong because lack of movement can weaken them and it may take a long time to build them up again. You also need to learn how to stretch the muscles that become shortened. Any form of cardiovascular exercise where you get out of breath has many benefits such as improving chest expansion, decreasing fatigue and improving sleep. Contact NASS for information about exercise dvds or cassettes of exercises for you to follow at home. On joining the Society you can also attend supervised weekly evening group physiotherapy sessions organised by your nearest NASS branch. There is a small charge per session. You will find some examples of exercise later in this Guidebook.
It is important to remain physically active and to enjoy the recreational exercise you choose to undertake. Swimming is very beneficial since all of the muscles and joints are exercised in a gravity free environment. Vary your swimming strokes as much as possible. If it helps, use a snorkel when swimming on your front. It is best to avoid contact sports such as rugby and wrestling. Caution should be taken with high impact sports like netball, basketball, tennis and step aerobics if it worsens your symptoms. Whatever the activity, wearing trainers with an impact absorbing insole will help lessen the jarring on your joints.
Carry on working
Most people with AS are highly motivated and are reported to have less time off work than average. Indeed, the majority remain in fulltime employment. When you are at work, pay special attention to the position of your spine both when sitting and standing. If you sit at a desk or table maintain a correct posture by adjusting your chair to avoid having to bend forwards. Do not sit or stand in one position for too long. If you are required to stay in one position, wriggle, move or stretch as many joints as possible, as often as possible.
Posture
This relates to the position of your body at any time during the day or night. Poor posture will be detrimental to the ultimate position of your spine. It is beneficial to stretch out for 10 minutes a day lying on a firm surface on your back with your knees at right angles feet dangling towards the floor. When adopting this position and when sleeping, use as few pillows as possible. You may find complementary forms of exercise such as pilates or yoga effective in improving your posture, balance, mobility and strength.
Alternative therapies
We encourage people to do whatever they find helps, provided it is not dangerous. Due to the extra bone formation and possible osteoporosis, which may increase your risk of sustaining a fracture, forceful manipulative treatments and sports massage should be avoided. NASS members have tried alternative therapies such as acupuncture, deep tissue massage, aromatherapy, reflexology and homeopathy. So far none have been shown to have any advantage over conventional medical treatment, although there is evidence to suggest that massage and relaxation techniques provide some benefit. If you do want to try alternative remedies, please make sure that the practitioner fully understands the nature of AS and is a member of their relevant professional body.
Surgery
Surgery plays a very small part in the management of this condition. About 6% of people with AS need to have a hip replaced. This will successfully restore mobility and eliminate pain of the damaged joint. In rare cases surgery is used to restore a straighter posture of the spine and neck.
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Sleeping/Choosing a bed
Take care with your bed, mattress and pillow. The ideal bed should be firm, without sag, but not too hard. If you have an interior sprung mattress with a sprung base which is not very firm, place a sheet of chipboard or plywood between the mattress and the base. Try to use as few pillows as possible. A feather pillow can be moulded to suit any position and still give your neck good support. If you decide to buy a new bed it does not need to be the most expensive. You should choose an ordinary interior sprung mattress with a firm edge. If possible, lie on the mattress for 20 minutes before purchasing to see if it is comfortable. Firm foam mattresses can be considered but must be on a firm base. Some AS patients find memory foam mattresses and pillows helpful.
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exercises are done at the same time. You may also find hot water bottles, wheat bags or electric blankets useful in bed. If you have a particularly inflamed area, an ice-pack or bag of frozen peas wrapped in a damp tea towel may help. But do take care as ice can burn: oil on the skin helps to prevent burning but do not leave an ice pack in place for more than 10 minutes.
Eat well
You will need to eat a good nourishing diet with plenty of protein found in meat, fish and pulses. Eat fruit and vegetables for vitamins and drink milk for calcium. However, avoid becoming overweight.
Alcohol
Alcohol in moderation is not bad for AS. However, anti-inflammatory drugs and alcohol can both affect the stomach lining and should therefore not be taken together.
1. Exercises in lying
Starting position: Lying on your back, both knees bent, feet on floor.
Dont smoke
AS can reduce the capacity of the lungs. Smoking can make this even worse, making you more prone to lung infections and shortness of breath. If you are a smoker, it is therefore important that you stop.
1a Bridging
Lift your hips off the floor as high as possible, hold for 5 seconds and lower slowly.
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1b Spinal Rotation
Lift your arms up in front towards the ceiling, with fingers linked.
Take your arms to the right as far as possible while taking your knees to the left as far as possible. Turn your head to the same side as your arms. Repeat to the opposite side.
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3b Spinal Rotation
With your hands clasped on your forearms at shoulder level, turn your upper body to the right as far as possible. Repeat to the opposite side.
3c Neck Rotation
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4. Leg Stretches
4a Hamstring stretch
Stand facing a kitchen chair, with a padded seat for comfort. Place your right heel on the seat, keeping the knee straight, and reach forwards as far as possible with both hands towards your foot. Feel the stretch at the back of your right thigh. Hold for 6 seconds. Relax.
Face the side of the chair and hold the chair back with your right hand. Bend your right knee and place your right shin on the seat.
Place your left foot forward as far as possible. Repeat twice, stretching a little further each time. Relax. Repeat with the opposite leg. Now place both hands behind your back. Bend your left knee as much as possible, keeping your head up and your back straight. Feel the stretch at the front of your right hip. Hold for 6 seconds. Relax. Repeat twice, stretching a little further each time. Relax.
Turn round to face the other side of the chair. Repeat with the opposite leg.
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5. Posture Stretch
Stand with your back to the wall, shoulders and buttocks against the wall and heels as close to the wall as you can. Tuck your chin in and push the back of your head towards the wall. Keep your shoulders down.
Stretch up as tall as possible without lifting your heels. Hold this position. Raise your right arm forwards and upwards while keeping your elbow straight, your upper arm close to your ear and your thumb towards the wall. Lower and repeat with opposite arm.
provide a forum to educate health professionals and the public in the problems of the disease; fund a small amount of research; influence governmental bodies and the National Health Service to provide improved treatment facilities; encourage and assist in the formation of similar societies in other countries.
Joining is easy
To join simply complete the membership form and return it with a cheque made out to NASS or send in the direct debit form. Or you can join via our website.
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Contact Addresses
National Ankylosing Spondylitis Society (NASS) Unit 0.2 The Fergus Rogers Centre 1 Victoria Villas Richmond Surrey TW9 2GW T: 0208 948 9117. F: 0208 940 7736. E: nass@nass.co.uk www.nass.co.uk AStretch AStretch is a group of physiotherapists that steer the management and improve the understanding of AS in the UK. www.astretch.co.uk Arthritis Research Campaign Copeman House St Marys Court St Marys Gate Chesterfield Derbyshire S41 7TD (Raises and distributes money for research) T: 0870 850 5000 or 01246 5580 33 www.arc.org.uk Arthritis Care 18-20 Stephenson Way London NW1 2HD T: 020 7380 6500 www.arthritiscare.org.uk National Association for Colitis and Crohns Disease (NACC) 4 Beaumont House Sutton Road St Albans Herts AL1 5HH T: 01727 8300 38 www.nacc.org.uk Psoriasis Association Milton House 7 Milton Street Northampton Northants NN2 7JG T: 0845 676 0076 www.psoriasis-association.org.uk
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NASS
NASS
Subscription Rates
UK Membership Overseas Membership 12 15
Please fill in this form to receive the current twice yearly AS News, together with your membership card. The newsletter features social and medical aspects of the condition. It also contains a list of over 100 NASS branches providing regular evening supervised group physiotherapy. Please return to: NASS, UNIT 0.2, ONE VICTORIA VILLAS, RICHMOND, SURREY TW9 2GW
3 250
I wish to make a donation Total Signature Member Details Surname First name(s) Address Post code Telephone number: Home Email address Do you suffer from Ankylosing Spondylitis?* YES Occupation
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The National Ankylosing Spondylitis Society Unit 0.2, One Victoria Villas, Richmond Surrey TW9 2GW
N.B. In order for us to reclaim tax you must pay an amount of income tax and/or capital gains tax at least equal to the tax that the charity reclaims on your donation in the tax year. Higher rate tax payers can claim further tax relief in your self assessment tax return. If your declaration covers donations you may make in the future please notify NASS or CAF if: You change your name or address while the declaration is still in force Your circumstances change i.e. you no longer pay tax on your income or capital gains tax equal to the tax that the charity reclaims You can cancel your declaration at any time by notifying NASS or CAF. It will then not apply to donations you make on or after the date of cancellation or such later date as you specify.
Instruction to your bank or building society. Please pay CAF/National Ankylosing Spondylitis Society Direct Debits from the account detailed in this instruction subject to the safeguards assured by the Direct Debit Guarantee. I understand that this instruction may remain with CAF/National Ankylosing Spondylitis Society and, if so, details will be passed electronically to my bank/building society.
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