devised with and for people with arthritis

Understanding

arthritis

ARTHRITIS CARE Understanding arthritis

Everybody has heard of arthritis, yet few people actuallyknow much about it. Arthritis affects about nine millionpeople in the UK – people of all ages can get it, and itaccounts for one in five visits to a GP. It cannot be cured,but there is much you can do to help yourself and live abetter quality of life.

Being diagnosed with arthritis can raise many concernsand questions. In this booklet you will find informationabout arthritis itself; the kinds of treatment that areavailable; ways of coping; how to get help; and how todevelop your own skills to manage the condition.

Contents

Introducing arthritis 1About the condition

How arthritis will affect you 2Explaining pain, immobility and how joints work

The different kinds of arthritis 4Details about some types of arthritis

Treatment 19Treatment options that might be appropriate for you

Making a difference yourself 28The steps you can take to make life easier

Getting out and about 32Information on transport, work and support

Feelings about arthritis 36The emotions you may experience and what can help

Useful organisations 38

All people pictured on the cover and quoted in this booklet have arthritis.

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INTRODUCING ARTHRITIS

■ What is arthritis?Arthritis means, simply, inflam-mation of the joints. The wordrheumatism is even moregeneral, and is used to describeaches and pains in joints, bonesand muscles. Arthritis is not adiagnosis in itself; it is a generalterm that acknowledgessomething is wrong. It oftentakes time for a doctor to reacha precise diagnosis.

There are over 200 kinds ofrheumatic diseases or conditions(often referred to as arthritis ormusculoskeletal diseases) whichaffect about nine million peoplein the UK. Some forms ofarthritis are rare,

while others, such asosteoarthritis, are much morecommon.

It is not generally known thatarthritis affects people of allages, including children. Arthritisis not, therefore, just part of theageing process. However, somekinds of arthritis do tend toaffect people in particular agegroups, whilst others are morecommon in women than men.

‘If you can learn tofeel OK then physicalrestrictions seem awhole lot lessimportant’Most commonly, people with

arthritis experiencepain and immobility.The causes of

arthritis are complex,and many are asyet unknown.While there is nocure, there is

plenty that can bedone to controlthe disease andto improve yourquality of life.

The type of arthritis you havecan determine how you mightbe affected and for how long.Sometimes arthritis can getbetter on its own or as a resultof treatment. However, themajority of people with arthritiswill find they are affected tovarying degrees over manyyears. In the early stages it isoften very difficult for yourdoctor to tell which course yourdisease will take.

For most people, arthritiscauses discomfort, pain, stiffness,fatigue – and frustration. It mayresult in varying degrees ofphysical impairment – that is, itcan cause loss of strength andgrip which in turn may makeyour movements more difficult.This may be hard to accept,especially if you have always leda very active life and may meanthat you will have to adapt andmake some changes to your life.

Because people feel paindifferently and react totreatment differently, the painyou experience from yourarthritis will be very individual toyou. Pain can even be felt inplaces other than the affected

joint. You may, for example, havearthritis in the hip, but feel painin your knee. This is calledreferred pain.

There are different kinds ofpain. Some people get persistentpain, some get sharp stabbingpains, others ache and others geta complex mixture of aches andpains. You will find furtherinformation in Arthritis Care’sbooklet on pain.

Your loss of strength, grip andmovement will fluctuate fromday to day. There will be somegood days and some bad days.

‘You get good daysand you get bad days.The thing is, people willsee you on a good dayand think that you’rebetter’Although there is, as yet, noknown cure for most types ofarthritis, there is much that canbe done to help. Pain can usuallybe controlled, stiffness andinflammation can be relieved.There are ways of overcomingthe loss of strength, grip andmobility.

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HOW ARTHRITIS WILL AFFECT YOU

There is a lot you can doyourself to take control of yourarthritis.

■ How joints workWhat goes wrong with jointsvaries from one kind of arthritisto another.

A joint is where one bonemoves on another. The twobones are held together byligaments. Ligaments are likeelastic bands: they keep thebones in place while muscleslengthen and shorten to makethe joint move.

A coating of soft tissue(cartilage) covering the bonesurface stops the bones fromrubbing directly against eachother. This helps the joint towork smoothly.

The joint is surrounded by a capsule and the space within the joint (joint cavity) containssynovial fluid. This fluid, whichprovides nutrients to the jointand cartilage, is produced by the synovial membrane (orsynovium) which lines the joint cavity.

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A normal joint

SYNOVIALFLUID

CARTILAGESYNOVIALMEMBRANE

CAPSULE ANDLIGAMENTS

BONE

BONE

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Once your doctor has confirmedwhat kind of arthritis you have, it helps to have at least a basicunderstanding of what it is. This section gives a brief outlineof some of the more commonkinds of arthritis. However,there are actually over 200different forms of arthritis.

Some kinds of arthritis arestraightforward to diagnose, butothers are much more complexand may need X-rays and variousblood tests.

If you are asked to have a lotof tests it does not mean yourarthritis is particularly bad orthat it will necessarily be difficultto treat. Your doctor has to both confirm what youhave and eliminate what youdon’t have before treatment can begin.

If you have an inflammatorycondition, such as rheumatoidarthritis or lupus, your GP may refer you to a rheumatol-ogist at your local hospital ornearest specialist centre. People with more mechanicaltypes of arthritis, such asosteoarthritis, are unlikely to be referred.

■ OsteoarthritisOsteoarthritis (OA) is acondition which usually developsgradually, over several years, andaffects a number of differentjoints. The cause is unknown,but it does appear more infemales than males and oftenstarts after the menopause. Thiscan lead to it being seen as partof the ageing process.

For some people the changesare so subtle and develop oversuch a long time that they arehardly noticed. For others,problems may worsen over anumber of years, after which thecondition may settle andbecome easier to manage. Whenthe overall disease processfinishes, joints may look knobbly,but are usually less painful. Insome cases they become painfree and, despite theirappearance, still enable you tocarry out most everyday tasks.

Osteoarthritis used to beconsidered wear and teararthritis, but it is now thoughtthere are many more factorsthan age and use that contributeto the development ofosteoarthritis – including obesity,

THE DIFFERENT KINDS OF ARTHRITIS

past injury and genetics.What happens? In osteoarthritis,cartilage becomes pitted, roughand brittle. The boneunderneath thickens andbroadens out. In some cases,bony outgrowths (osteophytes)may form at the outer edges ofthe joint, making it look knobbly.The synovial membrane and thejoint capsule thicken. The jointspace narrows and sometimesthe amount of fluid in the jointincreases. Often there is someinflammation. The joint maybecome stiff and painful to moveand occasionally swells.

If the osteoarthritis worsens,part of the cartilage may becomebrittle and break away from thesurface of the bone. Bone ends

can then begin to rub againsteach other and the ligamentsbecome strained and weakened.This causes a lot of pain andsome changes in the shape of the joint.Which joints? Osteoarthritis ismost common in hands, knees,hips, feet and spine.How is it treated? Your doctorwill try to minimise the effects ofyour arthritis and to reduce thesymptoms, especially the pain.

The medicines that you will beprescribed will fall into threegroups: analgesics, which help torelieve pain; non-steroidal anti-inflammatory drugs (NSAIDs)which, when inflammation ispresent, reduce thisinflammation and in so doing also

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The early stages of osteoarthritis

THINNINGCARTILAGE

More advanced osteoarthritis

THICKENEDJOINTCAPSULE

BONETHICKENS ANDSPREADS OUT

(OSTEOPHYTES)

CARTILAGETHINS

FURTHER

reduce pain; and steroids whichcan be injected into the affectedjoint. None of these treatmentswill actually cure your arthritis,but will reduce the symptoms.

If your arthritis becomessevere, and particularly whenthe major weight bearing joints,such as knees and hips areaffected, your doctor mayrecommend you see anorthopaedic surgeon with a viewto having the joint replaced.Surgery is usually onlyconsidered after all othersuitable treatment options havebeen explored. Most replacedjoints give no problems for 10-15 years, longer if you treatthem carefully. If they doeventually become troublesomethey may need to be replaced –this is called revision surgery.

■ Secondary arthritisSecondary arthritis sometimesdevelops after an injury whichdamages a joint. It may developmany years later.What can you do? You canreduce pain and stress on yourjoints by finding exercise andrelaxation techniques that workfor you. Appropriate exercisecan strengthen the muscles

which support and protect thejoints. If you are uncertain aboutwhat kind of exercise to do, aphysiotherapist will be able toadvise you. If you can move it,you can exercise it.

Massaging painful joints andmuscles works for many peopleas it may help to lower thestresses in the body overall. If you are overweight, you cantake some strain off your weight bearing joints by losingweight.

It helps to learn the balancebetween relaxation and keepingas fit and active as possible.Relaxation classes help somepeople, as do other complemen-tary therapies, such asacupuncture and aromatherapy.

■ Rheumatoid arthritisRheumatoid arthritis (RA) is aninflammatory disease mainlyaffecting joints and tendons.Inflammation means swelling andheat. An inflamed joint isswollen, reddened and is warmto the touch. In most diseases,inflammation serves a purpose –it helps healing and, whenhealing is done, the inflammationgoes away. In rheumatoidarthritis the opposite happens.

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The inflammation causes damage– it can go on for a long time, orcome and go. When it is active –known as a flare-up – you mayfeel unwell.

The body’s natural defences(the immune system) are part ofthe problem in rheumatoidarthritis. It somehow puts itselfinto reverse and attacks certainparts of the body instead ofprotecting it. This auto-immunereaction occurs mainly in thejoints, but in a flare-up otherorgans can be affected. It is notknown what causes the immunesystem to react in this way.What happens? Rheumatoidarthritis may start suddenly, butmore often the symptomsdevelop slowly over a few weeksor months. While an acute onset

of RA may be easier to diagnose,a gradual onset can makediagnosis much more difficult.Morning stiffness and the painfulswelling of joints are typicalfeatures.

The thin synovial membranethat lines the joint capsule andthe tendon sheaths (tubes inwhich the tendons themselvesmove) and the bursae (the sacsof fluid that allow the musclesand tendons to move smoothlyover each other) becomeinflamed. The joints and theinflamed tissues then becomestiff, painful and swollen.

If your doctor begins tosuspect rheumatoid arthritis, youwill be asked to have someblood tests done. If some or allof these are positive, or your

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The early stages of rheumatoid arthritis

THINNINGCARTILAGE

SWOLLEN,INFLAMEDSYNOVIALMEMBRANE

More advanced rheumatoid arthritis

THICKENEDSYNOVIALMEMBRANE

DAMAGE TO BONE

THINNINGCARTILAGE

symptoms persist, you willusually be referred to aconsultant rheumatologist for afirm diagnosis and treatment.

Tiredness and a general feelingof fatigue, coupled with earlymorning stiffness lasting forseveral hours are very importantsymptoms to report to yourdoctor. This will assist in thediagnosis and will help inensuring that you get the righttreatment.How will it affect me? Howeverbadly and for however long youhave the disease, there are somecommon difficulties. The first isthe pain, and loss of strength andmovement in the inflamed joints.The second is feeling generallyunwell and tired. Stiffness can be

bad, especially first thing in themorning or after sitting still for along time.

Working with all your healthprofessionals and learning howto manage your own arthritis canlessen the impact and help youto remain in control of yourdisease. You may be able tolearn how to develop these skillsby attending one of ArthritisCare’s self-managementprogrammes.How is it treated? Your doctor’smain objective will be to reducethe damaging inflammation.Increasingly, rheumatologists areusing disease modifying anti-rheumatic drugs (DMARDs)soon after diagnosis. This isbecause it is now recognised

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that these can slow down thedisease process which, in turn,reduces the overall damage itcan cause. They can also helpyou to feel better.

DMARDs are usually given atthe same time as other non-steroidal anti-inflammatory drugs(NSAIDs). If DMARDs do notwork for you, you may beentitled to treatment with anewer class of drug called anti-TNF. See pages 22-24 for moredetails about each type of drug.

Steroids may occasionally beused if the inflammation issevere. Your doctor will alwaysseek to give you the lowestpossible effective dose.

The drugs used to controlyour rheumatoid arthritis haveto be carefully monitored withregular visits to the rheuma-tology department for check-upsand blood tests.

Sometimes joint replacementsurgery may be suggested,particularly if the joint is verypainful or there is a risk of losingthe overall function.What can you do? Learning topace yourself is vital. Acknowl-edging and accepting help forheavy and difficult tasks willenable you to conserve your

energy for the things you can do.Working towards a balance of

relaxation and exercise canmake a big difference. Exercisenot only helps to retain therange of movement (ROM) inyour joints, it also helps to keepyour muscles as strong as theycan possibly be. A physio-therapist will be able to adviseyou on suitable exercises.

You can also learn how tomake the most efficient use ofyour joints, whilst at the sametime protecting them fromfurther damage. An occupationaltherapist (OT) will be able toadvise you on the use of splints,gadgets and equipment that willassist you with daily living tasks.

‘I don’t think you haveto justify yourself, justexplain what thereasons are and makesure the right peopleknow’It will also help if the people youlive and work with understandyour condition – and the frustra-tions its symptoms can bring. Itcan be very helpful to discussyour difficulties with otherpeople with RA. There may be

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nurse-led patient educationclasses at your rheumatologydepartment or you may find thatthere is one of Arthritis Care’sself-management coursesavailable in your area. (Contactyour local Arthritis Care officefor further information.)

■ Ankylosing spondylitisAnkylosing spondylitis (AS) isanother form of inflammatoryarthritis. It begins by affectingthe joints of the lower back.They become inflamed and stiff.‘Ankylosing’ means stiffening;‘spondylitis’ means inflammationof the spine. If left untreated thejoints of the spine may becomefused (bridged by bone) and losetheir movement.What happens? Ankylosingspondylitis usually starts aroundthe triangular bone at the base ofthe spine (the sacrum) where itjoins the pelvis (in the sacroiliacjoint). These joints becomepainful and inflamed. There willalso be some lower backstiffness in the morning.

The spine is made up of achain of bones called vertebrae.Inflammation starts at the edgesof these vertebral joints. As aresult of the inflammation, scar

tissue forms in the spacebetween the two bones, makingthe joint stiff. The scar tissuemay eventually turn into bone,filling the space between thebones. If this happens, the jointis effectively fused andmovement of the spine islimited.

Although most commonamong younger men, womencan also be affected. Like mostkinds of inflammatory arthritis itcan go into remission, oftenwhen people reach their fifties.

Which joints? It is usually thejoints of the spine, shouldersand, sometimes, the hips thatare affected. In a few people,other joints can becomeinvolved, such as knees andankles.

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Spine and pelvis

DISCS

PELVIS

VERTEBRAE

HIP JOINT SACROILIAC JOINTS

How will it affect me? It startswith pain, aching and stiffness,usually in the lower back. After awhile the pain will go, thenreappear maybe further up theback. Movements of the chestmay also be limited. These boutsof pain and stiffness may comeand go over a number of yearsand, then, when the inflamma-tion dies down, stop altogether,though the restriction of spineand chest movement persists.

The amount of damage doneby the disease depends on howlong and how actively you havethe disease. Most people havesome pain and discomfort butmanage a full daily routine. Forothers with more severedisease, the spinal restriction andinflammation in other joints canbe disabling. It is important toget an accurate diagnosis of ASas much can be done tominimise its effects.

As with other inflammatorydiseases there can be bouts ofoverwhelming fatigue. Inaddition, the eyes may alsobecome painful and bloodshot.This inflammation is called iritisand needs immediate treatmentto prevent any permanentdamage.

How is it treated? Anti-inflammatory drugs can help toreduce pain and stiffness, but themain treatment is exercise. Thishelps to relieve pain, maintainmobility and prevent the jointsfrom becoming fused into a badposition. A fused spine can leadto the back being permanentlybent and will restrict chestexpansion. If the hip joints arebadly affected, hip replacementmay be suggested.

In some areas, people with AShave access to anti-TNF drugs.Ask your rheumatologistwhether you could be a suitablecandidate.

■ FibromyalgiaFibromyalgia is a commondisorder causing widespreadpain, aching and stiffness thataffects the muscles, ligamentsand tendons, but not the joints.It may affect one part of thebody or several different areassuch as the limbs, neck and back.What happens? People withfibromyalgia usually ache all over,although having pain in a numberof specified tender points for aperiod of time helps diagnosis.This can give rise to localisedconditions such as tennis elbow.

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How will it affect me? Pain,tiredness and sleep disturbanceare the main symptoms. Mostpeople feel the pain offibromyalgia as aching, stiffnessand tiredness in the musclesaround the joints. Othersymptoms include fatigue,stiffness on waking, wakingfeeling unrefreshed, headaches,concentration problems andirritable bowels among others.

Many people find fatigue to bethe most troublesome symptom.This can make it difficult to dothings such as climbing the stairs,doing household chores,shopping or going to work. Itcan also affect your personal andsocial life.

‘Having arthritis isexhausting, but I’velearnt to be patient’Research has shown that duringsleep, people with fibromyalgialose the deep, restorative sleepthat our bodies need. This setsoff a vicious circle of pain andsleep disturbance which cancause depression.How is it treated? There is nosimple cure for fibromyalgia, butmany people find ways of

managing the symptoms.Your doctor can help to treat

your sleep disturbance. Manypeople with fibromyalgia findthat antidepressant drugs areeffective for chronic pain andthey may help to restore a sleeppattern. Antidepressants mayhelp even if you do not have thedepression which oftenaccompanies the condition.

Research has shown thataerobic exercise, such asswimming, improves fitness andreduces pain and fatigue inpeople with fibromyalgia.Exercise will also help you tolose excess weight, which canaggravate the condition.

■ GoutGout is a condition wherecrystals build up in the body andcause joints to become verypainful. Once treated, gout is nota problem for most people.What happens? Gout is causedby uric acid crystals in the joints.We all have some uric acid in ourblood but most of us pass outenough uric acid in our urine tokeep down the amount in ourblood. However, some peopledon’t pass enough, or theyproduce more in the first place,

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so the level of uric acid in bloodand tissue fluids is higher.

When there is too much uricacid in the tissues, it can formcrystals. These crystals can formin and around joints. If crystalsenter the joint space they causeinflammation, swelling – andsevere pain.Which joints? Gout commonlyattacks the joints at the base ofthe big toe, but it may affectother joints – the ankles, knees,hands, wrists or elbows.How will it affect me? The jointstarts to ache, then quicklybecomes swollen, red and

extremely painful. The attackusually lasts for a few days, thendies down, and the jointgradually returns to normal.

How is it treated? Anti-inflammatory drugs relieve painquite quickly and fight theinflammation. Aspirin however,should not be used to relieve thepain because it can increase thelevels of uric acid in the body.

Further attacks of gout can beprevented by keeping down theamount of uric acid in yourblood. This can be done bylosing some weight if necessary,and generally keeping fit. Cutting out some foods may alsohelp, particularly alcohol and redmeat. Other foods are alsothought to affect gout so discusswith your doctor if you thinkthere is a problem in your diet.Some people need life-longtreatment with a drug which will lower the uric acid levels inthe body. What you need to dowill depend on your health andyour levels of uric acid, so getyour doctor’s advice.

■ Polymyalgiarheumatica

Polymyalgia rheumatica (PMR) isan inflammatory conditionaffecting the muscles in andaround the shoulder and upperarm areas, buttocks and thighs.The cause is unknown.

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Gout

URATECRYSTALS

INCARTILAGE

URATECRYSTALSCOLLECT INSYNOVIALMEMBRANE

DAMAGE TOCARTILAGE

What happens? Polymyalgiarheumatica usually starts verysuddenly. The stiffness inaffected areas usually eases asthe day progresses, but oftenreturns in the evenings. Incontrast to rheumatoid arthritisthe joints are not usuallyinvolved, though occasionallythere can be an associatedinflammation in joints such as theshoulder, hip and wrist. Veryoccasionally, the arteriessupplying the head and neck areaof the body may be involved,causing headaches and possibleloss of sight. This very seriouscomplication of the disorderrequires immediate treatment.How will it affect me? Stiffnessassociated with the conditionusually restricts mobility, particu-larly early in the day, and peopleexperience fatigue. Frequentlythere is an associated loss ofweight and appetite.How is it treated? PMR respondsdramatically to treatment withsteroid tablets taken orally. Thesymptoms usually ease substan-tially within 24 to 48 hours ofstarting treatment and, overtime, the dose of steroid will begradually reduced. Most peoplerequire treatment for a period of

one to three years. If thecondition involves the arteries tothe head and neck (cranialarteritis, giant cell arteritis), ahigher dose of steroids may beused initially than in straightfor-ward polymyalgia rheumatica.

■ Psoriatic arthritisSome people who live with theskin condition psoriasis alsodevelop a form of arthritisknown as psoriatic arthritis. Itcauses inflammation in andaround the joints. What happens? Psoriatic arthritiscan affect most joints, buttypically causes problems infingers and toes, with pitting anddiscoloration of nails. About athird of people with psoriaticarthritis also have spondylitis – astiff, painful back or neck causedby inflammation in the spine.How is it treated? Anti-inflammatory drugs will help tocontrol the pain and stiffness andyou may be offered disease-modifying drugs to attack thecause of the inflammation. Withalmost all disease-modifyingdrugs you will need to haveregular blood tests and, in somecases, a urine test. Some anti-TNF drugs are now being used

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to treat this condition, butaccess is limited. Steroidinjections are oftenrecommended for particularlytroublesome areas.

Treatment for the skin isusually with ointments, but ifthese don’t help you may needtablet treatment and lighttherapy.

Exercise is very important tohelp prevent weak muscles andstiff joints. However, rest isequally important.

The pain can get you downand cause stress, anxiety anddepression. Counselling can helpas well as relaxation techniquesto help you to deal with stress.

■ Systemic lupuserythematosus

Systemic lupus erythematosus(SLE or lupus) is a disease inwhich the body’s naturaldefences (the immune system)are upset. Cells and antibodies,which are in the blood to defendthe body against infection, beginto attack it instead and causeinflammation. Lupus is a systemicdisease – that is, it can affectmany different parts of yourbody.What happens? Lupus may begin

with an obvious, bad attack. Itcan also begin very mildly.Because it has symptoms likemany other illnesses, it can befrustratingly difficult to diagnose.Often, other diseases withsomewhat similar earlysymptoms have to be eliminated.

Lupus occurs mostly inyounger women, so a commonquestion about the disease iswhether it makes pregnancyrisky. If you have lupus and arethinking of becoming pregnant,you should certainly get yourdoctor’s advice. Duringpregnancy, any drug treatmentneeds to be carefully controlledand may need to be changed.

Since lupus can flare up duringpregnancy and in the periodimmediately after the birth, youwill need to keep in close touchwith your doctor throughout.How will it affect me? Lupus cancause all sorts of differentproblems and varies enormouslyfrom one person to another.Aches and pains in the joints,sometimes with joint inflamma-tion, are the commonest initialsymptoms.

It is also a disease which maycome and go over many years,and it may sometimes disappear

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of its own accord.When the disease is active, it

is rather like having flu. You feelfeverish and tired. Almosteverybody with lupus also getsjoint and muscle pains becausethe joints become inflamed. Butlupus hardly ever causes anyjoint damage. The tendons, too,often become inflamed andstiffen so, for example, you maynot be able to straighten outyour thumb or fingers.

Skin rashes are common andmay worsen after being in thesun or ultraviolet light. In fact,sunlight can sometimes causethe disease to flare up. Lupuscan also cause inflammation ofthe linings of the heart and lungsand this can cause chest pains orbreathing difficulty. Sometimesthe kidneys can becomeaffected.How is it treated? Many differentdrugs can be used to treat lupus.Steroids, the family of diseasemodifying anti-rheumatic drugs(DMARDs) and anti-malarialdrugs are commonly used. Oncea suitable drug treatment hasbeen identified, most people findthe effects of lupus are consider-ably lessened.

■ Difficulties diagnosinginflammatory arthritis

Inflammatory arthritis is oftendifficult to label in the earlystages and your diagnosis mayevolve with time. Generalcategories like seronegativearthritis (given when you testnegative for rheumatoid factor)may be used to describe yourcondition to begin with. Later, asthe pattern of illness establishes,it may be possible to be morespecific about the diagnosis –which could be rheumatoidarthritis, lupus or psoriaticarthritis, for example.

■ Arthritis in childrenAbout 12,000 children in the UKunder the age of 16 have a formof arthritis. Most kinds ofchildhood arthritis come underthe general heading of juvenileidiopathic arthritis (JIA). JIAinvolves inflammation, pain andswelling in one or more jointsfor at least six weeks. You mayhear it referred to as juvenilearthritis. The causes areunknown.

The commonest forms of JIAare listed here.● Oligo-articular JIA is thecommonest kind of childhood

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arthritis and affects four orfewer joints in the body. A childwith this sort of arthritis doesn’tusually become unwell – theproblem is more or less limitedto swollen, painful joints. But eyeproblems are quite common andspecialist eye checks are,

therefore,needed.

This typeof arthritis

tends to

affect large joints such as theknees, ankles and wrists and mayresult in pain and swelling of thejoints.

The outlook for most childrenwith oligo-articular juvenilearthritis is good. Although somechildren will develop jointdamage, the majority get betterand grow up to lead ordinarylives.● Polyarticular JIA is anotherkind of juvenile arthritis andaffects many joints (more thanfive). It can start at any age froma few months onwards andusually spreads from one jointto another quite quickly –often within months.

Sometimes children withpolyarticular JIA are also

generally unwell with afever and perhaps arash.● Systemic onset JIAis a type of arthritisthat begins withsystemic symptomssuch as fever, rashes,lethargy andenlarged glands.Systemic means itcan affect thewhole body. Earlysigns are often

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mistaken for an infection. Thisform of the disease affectschildren of any age.

Treatment for children witharthritis is usually much the sameas for adults, but the problemswhich crop up in everyday lifecan be very different. Childrenwith arthritis need to lead asordinary and full a life as theycan. Keeping school and sociallife going is extremely important,although there may be a need tofind some alternative socialactivities.

Exercise is especially helpfuland a lot of children witharthritis benefit enormouslyfrom swimming. But most of all,it is family support that helps achild with arthritis. Above all,young people need to be part oftheir own age group and not tobe seen as different.Letting young people witharthritis develop their ownindependent coping skills is vital.It is all too easy for families to beover protective. Most youngpeople can compete intellectu-ally with their peers and develop

relationships as they movetowards adulthood.

‘I’m very lucky that myparents don’t wrap meup in cotton wool. Theylet me live my life’Arthritis Care produces twobooklets for parents of childrenwith arthritis and one forteachers. It also runs a freeconfidential helpline for youngpeople and their parents calledThe Source (Freephone: 0808808 2000; email: TheSource@arthritiscare.org.uk), and a rangeof local services and activities foryoung people. See the back pagefor contact details.

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If you would like information about a form of arthritis that is not mentioned in this booklet, please call theArthritis Care helpline (see back cover for contact details).

■ The right treatmentfor you

Once you have been diagnosedas having arthritis, it is a matterof finding the right treatment foryou. This will depend on thekind of arthritis you have, howbad it is, how it is affecting youand how you respond towhatever treatment you have.

It can sometimes take time tofind the treatment which worksbest for you. There may besome periods when differenttreatments have to be tried andtheir effects monitored. And,over time, your treatment mayneed to be adjusted to meetyour changing needs.

‘I’ve been helped agreat deal by all theprofessionals I’ve comeinto contact with’The part you playFinding the right treatment willrequire the development of agood relationship with all yourhealth professionals to enable asharing of knowledge – yours ismost valuable, so don’t be afraidto speak out. You should be

looking to develop an equalpartnership. The part you play is also important becausetreatment for arthritis is notsimply a matter of taking thetablets – you may needphysiotherapy as well as drugtreatment. If you think youwould benefit from getting helpfrom a physiotherapist or anoccupational therapist, don’t beafraid to ask.

‘There are lots ofdifferent ways ofdealing with pain.You’ve got to explorethe options, and findthe way that’s right for you’You will also need to learn howto care for yourself and yourjoints. Looking after yourself,adapting and managing everydaylife goes along with medicaltreatment. (See page 28 formore ways to help yourself.)

■ Who is involved?Your GPThe first person to becomeinvolved in your treatment will

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TREATMENT

be your GP. This will be yourfirst step towards getting adiagnosis. Your GP may be ableto establish quite quickly whatyour diagnosis is and be able tooffer you immediate treatment.If, however, your GP is unable todo this, he or she may organisefurther tests, usually a simpleblood test and some X-rays atyour local hospital.

‘No doctor is a mindreader. You’ve got tospeak out, say what isworrying you. Nobodyelse can do it for you’In addition, if you have inflam-matory arthritis, your GP mayeither refer you immediately, ordepending on how your arthritisresponds to treatment, maydecide to refer you at a laterstage, to see a specialist orconsultant at your local hospital.

Hospital consultantsThese are senior doctors whohave undergone specialisedtraining in the diagnosis andtreatment of a particular groupof disorders. A consultantrheumatologist specialises inarthritis/rheumatic diseases and

an orthopaedic surgeonspecialises in the surgicaltreatment of bone and jointdisorders.

If your GP has not referredyou for more specialisttreatment and you believe itwould be beneficial, you can askto be referred. For your firstappointment you will be seen bythe consultant or anothermember of the specialist’s teamto establish the diagnosis and to identify a suitable treatmentplan.

Your treatment plan mayrequire you to be seen regularlyto enable monitoring of bothyour disease and your treatment.This monitoring is aimed atensuring that your treatmentremains right for you and is,therefore, giving maximumbenefit, whilst at the same timekeeping a careful watch for anyside effects that may occur fromyour medication.

PhysiotherapistsIf you are referred to aphysiotherapist, at your firstappointment you will be given afull assessment of your joints,muscles, posture and how youwalk and generally move around.

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You will be asked about yourpain and what problems youmight have. Taking into consider-ation the general state of yourhealth and arthritis, a treatmentplan will be decided upon andagreed between you and yourphysiotherapist.

Treatment and general advicemay include exercise,hydrotherapy, mobilisationtechniques, relaxationtechniques, pain relief, Tens,splinting, walking aids and adviceon posture.

Occupational therapistsIf you are experiencing difficultywith day-to-day tasks like

washing, dressing, cooking andcleaning you will benefit fromvisiting an occupational therapist.They have a wealth of expertiseon what equipment is availableto assist you with a particulartask. They may also be able tosupply, on temporary loan, someof the more expensive items.

Your GP or hospital consultantcan put you in touch with anoccupational therapist. This maybe at your local hospital or theymay visit you at home. If youwish to see an occupationaltherapist and you areexperiencing difficulty withgetting a referral, then you canrefer yourself by phoning your

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local social services department.You should ask for an assessmentof your needs under the NHSand Community Care Act 1990.You have a right to thisassessment.

■ Making the most oftreatment

It is important that you make themost of any consultation, andthat you understand and feelconfident about any treatmentyou are given.

Before seeing any doctor,think about and write downwhat you want to say and ask.Take your list with you. It will jogyour memory and give youconfidence.

If an appointment comes to anend before you have got throughall your questions, you canalways ask for anotherappointment. If you are not sureabout something that has beensaid to you, don’t be afraid to sayso, and ask for a more detailedexplanation.

If any treatment does notseem to be working or if youfeel it is not right for you, goback to your doctor and say so.If you feel you have given it a fairtry and are still unhappy about it,

then you should discuss this withyour GP or your consultant.

Being straightforward,reasonable and clear about yourneeds can help you make themost of the professionalexpertise available to you. It mayhelp you to take a friend orrelative to your appointmentwith you. Most doctors andhealth professionals are happyfor you to do this if you explainthat you feel it will help you.

■ Treatment with drugsThere is a vast range of drugsused to treat arthritis. Whateverdrug you are prescribed, you willneed information from yourdoctor about what it is and howit may help.

Painkillers (analgesics)These are pain-relieving drugssuch as paracetamol, that do notaffect the arthritis itself, but helprelieve the pain and stiffness.They come in varying strengthsand the stronger ones are onlyavailable on prescription.

Paracetamol, which is availableover the counter, is the simplestand safest painkiller and the bestone to try first. Many pain-relieving drugs including pain

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relief gels can be bought overthe counter.

Never take more than therecommended dose and if indoubt, talk to your pharmacistor doctor.

Non-steroidal, anti-inflammatorydrugs (NSAIDs)These reduce inflammation.They can also give relief frompain and reduce joint swelling.There are many NSAIDs, butyou may be prescribedibuprofen, diclofenac, naproxen

or indometacin among others.NSAIDs are more likely to causeside effects – especiallyindigestion and diarrhoea. Theycan also cause stomach bleeding,so you may need to beprescribed an anti-ulcermedication at the same time,(known as proton pumpinhibitors). Some concerns havebeen raised about an increasedrisk of heart attack associatedwith using NSAIDs. If you areworried, consult your doctor.

Cox-2 inhibitors are a newertype of NSAID, designed to besafer for the stomach. Theyinclude celecoxib (Celebrex),etodolac (Lodine SR), etoricoxib(Arcoxia) and meloxicam(Mobic). However, concernshave also been raised about their side effects, includingincreased risk of cardiovascularproblems, especially for peoplewith a history of heart disease or stroke.

Although most Cox-2s are still available on prescription,their use is being strictlyregulated. You will need todiscuss with your doctorwhether this type of treatment is suitable for you.

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More powerful drugsDisease modifying and immuno-suppressive drugs are used forthose types of arthritis whichinvolve auto-immunity, includingrheumatoid arthritis and lupus.Immuno-suppressive drugs helpto dampen down the immunesystem’s attack on the joints.They have to be carefullymonitored because of possibleside effects.

Drugs used to treatrheumatoid arthritis includemethotrexate (Maxtrex), gold (Myocrisin, Ridaura), D-penicillamine (Distamine),sulphasalazine (Salozopyrin,Sulazine), azathioprine (Imuran,Azamune, Immunoprin),cyclophosphamide (Endoxana),ciclosporin-A (Neoral,Sandimmun) and anti-malarialdrugs. In lupus, azathioprine,cyclophosphamide and othersimilar drugs have provedhelpful.

Biologic response modifiersBiologic response modifiers,commonly known as anti-TNFdrugs, block the action of achemical called tumour necrosisfactor (TNF). They includeetanercept (Enbrel), infliximab

(Remicade) and adalimumab(Humira). Research on the drugshas been very promising, butthey are not appropriate foreverybody with arthritis. Theycan offer new hope to somepeople with severe rheumatoidarthritis, ankylosing spondylitisor psoriatic arthritis who havenot been helped by otherdisease-modifying drugs.

For cost and other reasons,the use of anti-TNFs is governedby strict guidelines which have tobe followed in assessing who iseligible. Ask your rheumatologistwhether you could be a suitablecandidate.

Steroids (cortisone, prednisolone)Steroids can be very effective inreducing inflammation. But iftaken long term, steroids cancause side effects.

If steroids are prescribed overa longer time, careful monitoringis needed and you must neversuddenly stop taking them. Youshould carry a blue steroid cardwith you. If you have not got oneask your pharmacist.

Steroids can also be given byinjection into an inflamed jointand they can be injected directly

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into the veins during a flare-up.Higher doses of steroid takenover a long period can causeosteoporosis, weight gain,diabetes and high bloodpressure. Your doctor will try togive you the lowest effectivedose and you will be carefullymonitored.

■ Taking drugsTaking drugs can be a worryingbusiness. Yet for many peoplewith arthritis, drugs are veryeffective. When taking drugs it isvery important that you followthese guidelines:● ask questions about the

treatment being prescribed● be absolutely clear about how

much to take, how often andwhen

● ask whether the drugs arebest taken with or after mealsor whether they should betaken on an empty stomach

● ask whether the drug will actimmediately or only aftersome time

● ask about any possible sideeffects and what you shoulddo if they occur.

If you are thinking of starting afamily it is very important youdiscuss this with your doctor. He

or she may recommend that youcease taking some of your drugsseveral months beforeconception.

If you are already taking somekind of medicine and a new sortis prescribed, check that the twocan be taken together. Not allmedicines mix. Drugs may alsointeract with some foodsupplements and herbalremedies.

■ SurgeryWhile some people with arthritiswill never need to have surgery,others find it is very successful inrelieving pain caused by arthritis,improving mobility and reducingstiffness. It is usually the lastresort after other treatmentoptions have been explored.

You should discuss what isbeing offered fully with yourconsultant. Ask for theinformation you need so thatyou can understand the implica-tions and make a well-informeddecision about whether youshould go ahead. You will feelmore confident if you knowwhat is involved and this cangreatly enhance your recovery.

Surgery can be minor – toassess damage done or to

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smooth joints and repaircartilage – or it can be moreintrusive such as a jointreplacement.

Other operations for arthritisinclude the removal of theinflamed lining of the joint cavity(synovectomy); removal ofpainful coverings from tendons;the repair of damaged tendons;removal of bone to relieve pain;release of trapped nerves; andthe fusing of a joint to make itmore stable.

There are always risksassociated with surgery.

Recovery may take a lot oftime and effort on your part but,for most people, surgery bringsabout a dramatic improvementin their pain levels and quality oflife. You can find furtherinformation in Arthritis Care’sbooklet on surgery.

■ Complementary andalternative therapies

Many people with arthritis try arange of complementary oralternative therapies in additionto the conventional drugsprescribed by their doctor. Whatworks for one person may wellnot work for another.

Complementary therapies will

not offer you a cure, but theymay ease pain, stiffness and helpyou to deal with some of theunwanted side effects of takingdrugs. Complementary therapiescan also help you to have apositive attitude and help you torelax and change your lifestylefor the better.

There is a multitude ofdifferent therapies. Some ofthem are thoroughly reputableand regulated by statutorybodies. At the other end of thescale are therapies making highlydubious claims with little or noevidence to back them up.Details about some therapies areincluded further on. You can

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learn more by reading ArthritisCare’s booklet on drugs andcomplementary therapies.

MassageMassage has many advantages, itcan help relax and tone themuscles, improve blood flow andleave you feeling relaxed andcared for. Your partner or a closefriend could help out, or you cango to a professional masseur. Self-massage is also possible (gentlykneading the muscles in a painfularea to increase blood flow andbring warmth). Massage aroundan inflamed joint, not the jointitself, and stop if pain develops.

AcupunctureRecently, acupuncture has gainedincreasing acceptance byprofessionals. This ancientChinese technique involvesinserting very fine needles intoparts of the body. These feel likea little pinch and are aimed atsuppressing pain and triggeringthe release of endorphins. Askyour doctor to refer you to aqualified professional.

HydrotherapyUsually overseen by aphysiotherapist, hydrotherapy

allows you to exercise the jointsand muscles in a warm waterpool. The warm temperatureaids muscle relaxation and easespain in your joints. Because thewater supports your weight, therange of movement in your jointsshould increase and paindecrease.

Tips for finding a therapist● Ask your GP if he or she can

refer you on the NHS.● Ask how much treatment will

cost and how long it will take.● Find out whether the

practitioner is a member of aprofessional body.

● Find out whether they haveinsurance in case somethinggoes wrong.

● Ask about their training andhow long they have beenpractising.

● Beware of anyone whosuggests you stop takingprescribed drugs.

● Don’t stop taking prescribeddrugs without discussing itwith your GP.

● Tell your GP about anycomplementary therapies youare receiving.

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Getting medical help andtreatment for arthritis isimportant, but so too is helpingyourself. There is a lot you cando to minimise theoverall effects ofyour arthritis onyour everyday life– to control yourarthritis rather thanletting it control you.

Arthritis Care runs arange of self-management courses,such as ChallengingArthritis, to enable people tomanage their condition moreeffectively, dramatically improvetheir quality of life and help buildtheir confidence. ContactArthritis Care for moreinformation (see back page fordetails) or visit the website atwww.arthritiscare.org.uk

Below are some areas inwhich you can make a differenceto your life by making small butimportant changes.

■ Your general healthDietEating a healthy diet is a basicway of keeping well. Your body

needs a range of nutrients and toget these you need to eat avariety of foods. By eating avariety of food you can be fairlysure you are getting all the

nutrients you need.If you are overweight you

will probably beadvised to tryand lose some

weight to take thestrain off your

joints. If youneed help oradvice ondiet you canask to bereferred to a

dietician.There is a lot

of debate about whether diethas anything to do with thecauses and effects of arthritis.Research in this area iscomplicated and much moreneeds to be done. Some doctorsfeel that special diets are worthtrying. If you want to try aparticular diet make sure youtalk it over with your doctorfirst. Some people think somefoods make their arthritis worse.If you notice this it makes sense

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MAKING A DIFFERENCE YOURSELF

to avoid that food in future.Whatever diet you try, check

first that it is going to give youthe range of nutrients you need,and never begin a diet whichinvolves stopping medicationwithout consulting your doctor.Read Arthritis Care’s booklet ondiet and supplements for furtherinformation.

Exercise and restStiff joints which aren’t exercisedbecome stiffer and may, in theend, stiffen up altogether. Butany exercise you do has to bethe right sort. For many types ofarthritis, gentle, regular exerciseis very helpful and veryimportant. It keeps you mobile,it reduces pain, it relieves stress(because it is relaxing), and itprotects your joints by keepingthe muscles strong. But thewrong sort of exercise can putstrain on your joints and damagethem further. A physiotherapistcan help advise you on a saferoutine.

Resting is also important,especially when there is a lot ofinflammation or your arthritisflares up badly. However, guardagainst the danger of resting somuch that you seize up

altogether. Try to find the rightbalance. Nobody can rest orsleep well when they are tenseand tension always makes painworse.

Learning to relax can make ahuge difference to you, and willbecome another of your basicself-management skills. You canlearn simple relaxationtechniques which you can thenpractice regularly and use whenneeded.

Try asking your GP, or at your local library, about localrelaxation classes. There are also many books and tapes about relaxation, which you can borrow from your library, or buy.

Looking after your jointsInflamed or damaged joints needto be cared for and protected.Keeping healthy is part of this,but you also need to avoidstraining your joints by doingthings awkwardly or doing morethan you are comfortably able.This probably means learningdifferent ways of doing everydayjobs, and adapting your life in anumber of ways.

You may, for example, have togive more thought to the clothes

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and shoes you wear, to the wayyou lift, grip and carry things, tothe way you arrange your homeor place of work. An occu-pational therapist can help withall of this.

■ Everyday lifeIt can be frustrating to find thatsome of your everyday tasks arebecoming difficult andcomplicated. Adapting isn’t easy,and it isn’t something you learnovernight, but it will make lifeeasier. Try to set about solvingyour problems in practical waysthat suit you.

‘If I’m going to havetime and energy to dothe things I want to do,then I’ve got to accepthelp with the tasks thatI can’t manage’Equipment and adaptations There is a wide range ofequipment available to help you.You can save time and energy byusing some simple adaptation orhelpful piece of equipment, orby asking for help. You can findout about the range of equip-ment available and get moreinformation and advice from:

● an occupational therapist whocan look with you at the sortof difficulties you face and helpyou to work out new ways tomanage them – if necessarywith some kind of equipmentor adaptation

● The Disabled LivingFoundation offer free andindependent advice andfactsheets. It can also put youin touch with experiencedequipment advisors. Fordetails of the Disabled LivingFoundation see page 39

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● your local Citizens’ AdviceBureau can provide advice and details of sources offinancial help

● there may be a DisabilityInformation and Advice Line(DIAL) in your area. The DIALservice can tell you a lot aboutlocal services and may be ableto tell you about localsuppliers who loan or sellequipment. See page 39 forcontact details

● some equipment andadaptations can be obtainedfree or at a small chargethrough your local health orsocial services department

● you may be eligible for aDisabled Facilities Grant,available from your localhousing authority.

Availability and how much youpay depends on the kind ofequipment in question, and onwhere you live. You can also buydirect from private suppliers, butget advice from an occupationaltherapist or the Disabled LivingCentre before spending yourmoney.

Home care and personalassistance services are run bylocal social services departmentsand what is offered varies widely

from one area of the country toanother. Contact your localdepartment.

The Community Care (DirectPayments) Act 1996 enableslocal authorities to make cashpayments for community caredirect to individuals. If youreceive a direct payment you canbuy and control your ownservices rather than having tohave them arranged by yourlocal authority. You will need tocheck with your local authorityto see if you are eligible.

There is equipment availableto help with activities such asturning taps, opening tins,bottles, jars, cutting vegetables,bathing and dressing.

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Arthritis can affect manydifferent areas of your lifeincluding getting out and about,and even your work. Howeverthere is help available to enableyou to live your life to the full asmuch as possible.

There are a great manybenefits available to people whoare sick and/or disabled, and it isalways worth checking that youare claiming all that you areentitled to.

■ Driving with arthritisBeing able to drive gives peoplewith arthritis greater indepen-dence. Although driving may

become more difficult, there aremany adaptations or extras youcan add to make it easier onyourself.

You may at first need to movefrom a manual gearbox to anautomatic and to a car withfactory fitted power assistedsteering. However, if youexperience problems with theabove, you would be welladvised to seek a full assessmentfrom an accredited drivingassessment centre, as much cannow be done to keep youmobile.

An assessment centre will giveyou a full written report.

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GETTING OUT AND ABOUT

Provided your car is adapted asdetailed, this can be used insupport of your notification toThe Driver Vehicle LicensingAuthority (DVLA), Swansea, ofthe change in your medicalfitness to drive. Equally, this willbe of help if you have anyproblems with insurancecompanies. The law states thatyou must advise both the DVLAand your insurance company ifarthritis affects your ability todrive in any way.

Disability Living Allowance(DLA) is a social security benefitwhich is available in two parts:the care component and themobility component. It must beclaimed before your 65thbirthday.

DLA mobility component ispayable at one of two rates –higher or lower. The higher rateis payable if you are unable, orvirtually unable to walk. Formost people with arthritis it isthe virtually unable to walkcriteria that is applicable.

If you are awarded the higherrate mobility component youmay be eligible to obtain a carthrough the Motability scheme.See page 39 for contact details.You can also apply for a Blue

Badge. The Blue Badge Schemeprovides a national arrangementof parking concessions forpeople with severe walking diffi-culties who travel either asdrivers or passengers. Contactyour local social services fordetails on how to apply.

■ Financial support forhelp at home

The Disability Living Allowancecare component is payable atone of three rates for personalcare needs, like washing anddressing. It does not coverhousework or shopping.

The lower rate is payable ifyou need help with personalcare for a significant portion ofthe day, for example, to help youget up in the morning, or if youare over 16 and cannot preparea cooked meal for yourself.

The middle rate is payable ifyou satisfy either the daytime orthe night-time disability test.

The higher rate is payable ifyou satisfy both the daytime andthe night-time disability tests.

Attendance Allowance ispayable at one of two rates topeople aged 65 and over whoneed a lot of help with personalcare needs.

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Call the Benefit Enquiry Lineon 0800 882200 for a claimpack. If you are in NorthernIreland, call 0800 220674. Yourclaim can be back-dated to thedate of your call. Read ArthritisCare’s information sheets onbenefits to find out more.

■ At workYour arthritis may cause youdifficulties at work. If so, avoidmaking any hasty decisions –there may be a range ofsolutions.

The government-run Accessto Work scheme offersemployment-related help, bothin practical terms and by way ofpaying work-related expenses.This includes:● a support worker if you

need someone to providepractical help

● equipment (or adaptations toexisting equipment) to suityour individual needs

● adaptations to a car or taxifares if you are unable to usepublic transport

● alterations and/or adaptationsto your place of work.

Jobcentre Plus will provide youwith advice and practical support

to employers as well asemployees.

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For more information, readArthritis Care’s booklet onworking when you have arthritis.

‘It’s important that thepeople you work withunderstand how yourarthritis affects you’■ Other helpBoth your social servicesdepartment and your Citizens’Advice Bureau can tell you abouthelpful voluntary organisationsand local groups and what theyoffer. This may be practical help,information and support, orsimply contact with others insituations like your own.

‘It’s natural to feelanxious and it’s right to ask for reassurance if you need it’Contact with other people witharthritis can be invaluable. Manypeople with arthritis say that thebest advice they’ve had hascome from others who are insimilar situations.

Arthritis Care offers a range ofservices including informationand support to people witharthritis throughout the UK, as

well as local networks. See theback cover for moreinformation.

Other helpful organisationsare listed on pages 38-40.

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Your life is a great deal moreimportant than your arthritis. Yethaving arthritis obviously affectsyou, and no one finds that easyto accept. There can be timeswhen arthritis seems todominate not just your life butalso that of your family andfriends too. Try not to let thishappen. Carrying on with yourlife is very important.

‘You need to geton with life andnot dwell on it alltoo much’Along the way, there will almost certainlybe times whenyou feeldisheartened,angry,resentful,frustrated,lonely ordownrightdepressed.This isperfectlynormal.

‘Getting used to livingwith pain takes somedoing’A number of things may help.● Talking about how you feel

can ease the burden. Talk tosomeone who understandsthe need to talk and the way

you feel.● Try to look at the

reasons why you feelas you do. Thinkabout what yourfeelings really are and

what is causing them.● People with arthritis

are often understress. Stress can

make you feel bad.Learning ways torelax can help.There are manyrelaxationmethods,which, oncegrasped, notonly easestress but alsoprevent it.

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FEELINGS ABOUT ARTHRITIS

● If you are feeling depressed,and your depression simplywon’t lift, you should look forhelp. If you don’t want to talkto anybody close to you, thinkabout going to a professionalcounsellor.

● Read Arthritis Care’s bookleton emotions. Call 020 73806540 for details.

● Call Arthritis Care’s helplinefor confidential informationand support. See back coverfor contact details.

‘Having arthritis hasgiven me the chance totake a fresh look at mylife, and I do feel verypositive about that’It is possible for you to controlyour arthritis rather than lettingit control you. Learning how tomanage your arthritis effectivelywill help you to limit the impactit has on your life.

If you have any questionsabout living with arthritis,contact Arthritis Care or one ofthe organisations listed on thefollowing pages.

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GENERAL● arc (Arthritis Research

Campaign)Copeman House, St Mary’s Court, St Mary’s Gate, Chesterfield,Derbyshire S41 7TD. Tel: 01246 558033www.arc.org.ukFunds medical research intoarthritis and produces information.

● RADAR12 City Forum, 250 City Road, London EC1V 8AFTel: 020 7250 3222www.radar.org.ukA campaigning organisation with a range of information on disability issues.

SPECIALISTORGANISATIONS● National Rheumatoid

Arthritis SocietyUnit B4, Westacott BusinessCentre, Westacott Way,Maidenhead, Berks SL6 3RT Tel: 01628 823524www.rheumatoid.org.ukOffers advice and information for people with rheumatoidarthritis.

● Lupus UKSt James House, Eastern Road,Romford, Essex RM1 3NHTel: 01708 731251www.lupusuk.org.ukOffers information and support for people with lupus.

● National Ankylosing Spondylitis Society

Parkshot House, 5 Kew Road,Richmond, Surrey TW9 2PRTel: 020 8334 7026www.nass.co.ukOffers advice and informationabout living with ankylosingspondylitis.

● Fibromyalgia Association UKPO Box 206, Stourbridge DY9 8YLHelpline: 0870 220 1232(weekdays 10am-4pm)www.fibromyalgia-associationuk.orgProvides information and advice topeople living with fibromyalgia.

● Psoriatic ArthropathyAlliance

PO Box 111, St Albans, Herts AL2 3JQTel: 0870 7703212www.paalliance.orgProvides support to people livingwith psoriatic arthritis.

USEFUL ORGANISATIONS

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USEFUL ORGANISATIONS

HEALTH SERVICES● NHS Direct Tel: 0845 4647www.nhsdirect.nhs.ukInformation on conditions,treatments, support groups andlocal NHS services.

COMPLEMENTARY THERAPIES● Institute for Complementary

MedicinePO Box 194, Tavern Quay, London SE16 7QZTel: 020 7237 5165www.i-c-m.org.ukCan help find qualified localpractitioners.

DAILY LIFE● Disabled Living Foundation380-384 Harrow Road, London W9 2HUTel: 020 7289 6111Helpline: 0845 130 9177www.dlf.org.ukAdvice and information onequipment

● DIAL UKSt Catherine’s, Tickhill Road,Doncaster DN4 8QNTel: 01302 310123www.dialuk.org.ukDetails of your nearest disabilityadvice and information service.

PAIN● The British Pain Society3rd Floor Churchill House,35 Red Lion Square,London WC1R 4SGTel: 020 7269 7840www.britishpainsociety.orgInformation on chronic pain andpain clinics.

● Pain ConcernPO Box 13256, Haddington EH41 4YDTel: 01620 822572www.painconcern.org.ukOffers information and a helpline.

EDUCATION● Skill (National Bureau for

Students with Disabilities)Chapter House, 18-20 CrucifixLane, London SE1 3JWVoice/text: 020 7450 0620 Information line: 0800 328 5050www.skill.org.ukInformation about all aspects ofeducation, training andemployment.

GETTING AROUND● The National Forum of

Mobility CentresInfo line: 0800 559 3636A network of organisations thatprovide assessments of driving abilityand advice on vehicle adaptations.

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● Queen Elizabeth’s FoundationMobility Centre

Damson Way, Fountain Drive,Carshalton, Surrey SM5 4NRTel: 020 8770 1151www.qef.org.ukInformation about assessmentcentres and driving instructorsthroughout the UK.

● MotabilityTel: 0845 456 4566www.motability.org.ukProvides cars and poweredwheelchairs through the Motability scheme.

● National Rail EnquiriesTel: 08457 484950www.nationalrail.co.ukHas contacts for assistance fordisabled travellers.

CHILDREN AND YOUNGPEOPLE● Children’s Chronic Arthritis

Association (CCAA)Ground Floor Office, Amber Gate, City Walls Road,Worcester, WR1 2AHTel: 01905 745595www. ccaa.org.ukSupport for children with arthritisand their families.

● Contact a Family209-211 City Road, London EC1V 1JNTel: 0808 808 3555www.cafamily.org.ukOffers a helpline, support groups andcontacts.

● ChoicesPO Box 58, Hove, East Sussex BN3 5WNwww.kidswitharthritis.orgSupport group for families of childrenwith arthritis.

MONEY AND BENEFITS● Disability Alliance Universal House, 88-94 Wentworth Street, London E1 7SATel: 020 7247 8776 www.disabilityalliance.orgProvides information on benefits.

● Benefit Enquiry Line fordisabled people

Tel: 0800 882200www.dwp.gsi.gov.uk

In Northern Ireland, the BenefitsEnquiry Line is run by the SocialSecurity Agency.Tel: 0800 220674

USEFUL ORGANISATIONS

Arthritis Care is the UK’s largestorganisation working with and for allpeople who have arthritis.

Our booklets and magazine, website and professional helpline are tools to enable people to make positive choices. Our network of localgroups, self-management programmes andinternet forums bring people together to support each other in living life to the full. Our campaigning work promotes civil rights,better access to health and social care provision,and tackles issues important to people in theirlocal area.

Get in touch with us● Our helpline offers confidential information

and support. Call free on 0808 800 4050 (10am-4pm weekdays) or emailHelplines@arthritiscare.org.uk

● Our website provides information on all aspectsof arthritis and what we are doing in your area.Visit us at www.arthritiscare.org.uk

● Call us to find out more about what we do orhow to become a member.

Arthritis Care contact numbers:

UK Head Office: 020 7380 6500South England: 0844 888 2111Central England: 0115 952 5522North England: 01924 882150Northern Ireland: 028 9448 1380Scotland: 0141 954 7776Wales: 01239 711883

Published by Arthritis Care, 18 Stephenson Way, London NW1 2HDReprinted, Dec 2006 ACR014 Registered Charity No. 206563 ISBN 1-903419-37-9

UNDERSTANDING ARTHRITIS