Everybody has heard of arthritis, yet few people actually know much about it.Arthritis affects about 915,000 people in Ireland – people of all ages can get it, and it accounts for one in three visits to a GP. It cannot be cured, but there is much you can do to help yourself and live a better quality of life.

Being diagnosed with arthritis can raise many concerns and questions. In this booklet you will find information about arthritis itself; the kinds of treatment that are available; ways of coping; how to get help; and how to develop your own skills to manage the condition. You can read the entire booklet below or click here to download a copy.

Contents

Introducing Arthritis
About the condition
How Arthritis Will Affect You  
Explaining pain, immobility and how joints work
The Different Kinds of Arthritis
Details about some types of arthritis
Treatment
Treatment options that might be appropriate for you
Making a Difference Yourself
The steps you can take to make life easier
Getting Out and About
Information on transport, work and support
Feelings about Arthritis
The emotions you may experience and what can help

 

Introducing Arthritis

■ What is arthritis?
Arthritis means, simply, inflammation of the joints. The word rheumatism is even more general, and is used to describe aches and pains in joints, bones and muscles. Arthritis is not a diagnosis in itself; it is a general term that acknowledges something is wrong. It often takes time for a doctor to reach a precise diagnosis.

There are over 100 different types of arthritis, which affect approximately 1 in 6 people in Ireland. Some forms of arthritis are rare, while others, such as osteoarthritis, are much more common.

It is not generally known that arthritis affects people of all ages, including children. Arthritis is not, therefore, just part of the ageing process. However, some kinds of arthritis do tend to affect people in particular age groups, whilst others are more common in women than men.

‘If you can learn to feel OK then physical restrictions seem a whole lot less important’

Most commonly, people with arthritis experience pain and immobility. The causes of arthritis are complex, and many are as yet unknown. While there is no cure, there is plenty that can be done to control the disease and to improve your quality of life.

How Arthritis Will Affect You

The type of arthritis you have can determine how you might be affected and for how long. Sometimes arthritis can get better on its own or as a result of treatment. However, the majority of people with arthritis will find they are affected to varying degrees over many years. In the early stages it is often very difficult for your doctor to tell which course your disease will take.

For most people, arthritis causes discomfort, pain, stiffness, fatigue – and frustration. It may result in varying degrees of physical impairment – that is, it can cause loss of strength and grip, which in turn may make your movements more difficult. This may be hard to accept, especially if you have always led a very active life and may mean that you will have to adapt and make some changes to your life.

Because people feel pain differently and react to treatment differently, the pain you experience from your arthritis will be very individual to you. Pain can even be felt in places other than the affected joint. You may, for example, have arthritis in the hip, but feel pain in your knee. This is called referred pain.

There are different kinds of pain. Some people get persistent pain, some get sharp stabbing pains, others ache and others get a complex mixture of aches and pains. You will find further information in Arthritis Ireland’s booklet on pain, ‘Coping with Pain’. You can also learn more of the skills that will help you deal with arthritis on one of Arthritis Ireland’s self-management programmes.

Your loss of strength, grip and movement will fluctuate from day to day. There will be some good days and some bad days.

‘You get good days and you get bad days. The thing is, people will see you on a good day and think that you’re better’

Although there is, as yet, no known cure for most types of arthritis, there is much that can be done to help. Pain can usually be controlled, stiffness and inflammation can be relieved. There are ways of overcoming the loss of strength, grip and mobility.
There is a lot you can do yourself to take control of your arthritis.

■ How joints work
What goes wrong with joints varies from one kind of arthritis to another.

A joint is where one bone moves on another. The two bones are held together by ligaments. Ligaments are like elastic bands: they keep the bones in place while muscles lengthen and shorten to make the joint move.

A coating of soft tissue (cartilage) covering the bone surface stops the bones from rubbing directly against each other. This helps the joint to work smoothly.

The joint is surrounded by a capsule and the space within the joint (joint cavity) contains synovial fluid. This fluid, which provides nutrients to the joint and cartilage, is produced by the synovial membrane (or synovium) which lines the joint cavity.

The Different Types of Arthritis

Once your doctor has confirmed what kind of arthritis you have, it helps to have at least a basic understanding of what it is. This section gives a brief outline of some of the more common kinds of arthritis. However, there are actually over 100 different forms of arthritis.

Some kinds of arthritis are straightforward to diagnose, but others are much more complex and may need X-rays and various blood tests.
If you are asked to have a lot of tests it does not mean your arthritis is particularly bad or that it will necessarily be difficult to treat. Your doctor has to both confirm what you have and eliminate what you don’t have before treatment can begin.

If you have an inflammatory condition, such as rheumatoid arthritis or lupus, your GP may refer you to a rheumatologist at your local hospital or nearest specialist centre. People with more mechanical types of arthritis, such as osteoarthritis, are unlikely to be referred.

■ Osteoarthritis
Osteoarthritis (OA) is a condition, which usually develops gradually, over several years, and affects a number of different joints. The cause is unknown, but it does appear more in females than males and often starts after the menopause. This can lead to it being seen as part of the ageing process.

For some people the changes are so subtle and develop over such a long time that they are hardly noticed. For others, problems may worsen over a number of years, after which the condition may settle and become easier to manage. When the overall disease process finishes, joints may look knobbly, but are usually less painful. In some cases they become pain free and, despite their appearance, still enable you to carry out most everyday tasks.

Osteoarthritis used to be considered wear and tear arthritis, but it is now thought there are many more factors than age and use that contribute to the development of osteoarthritis – including obesity, past injury and genetics.

 

What happens?
In osteoarthritis, cartilage becomes pitted, rough and brittle. The bone underneath thickens and broadens out. In some cases, bony outgrowths (osteophytes) may form at the outer edges of the joint, making it look knobbly. The synovial membrane and the joint capsule thicken. The joint space narrows and sometimes the amount of fluid in the joint increases. Often there is some inflammation. The joint may become stiff and painful to move and occasionally swells.

If the osteoarthritis worsens, part of the cartilage may become brittle and break away from the surface of the bone. Bone ends can then begin to rub against each other and the ligaments become strained and weakened. This causes a lot of pain and some changes in the shape of the joint.

Which joints?
Osteoarthritis is most common in hands, knees, hips, feet and spine.

How is it treated?
Your doctor will try to minimise the effects of your arthritis and to reduce the symptoms, especially the pain.

The medicines that you will be prescribed will fall into three groups: analgesics, which help to relieve pain; non-steroidal anti-inflammatory drugs (NSAIDs) which, when inflammation is present, reduce this inflammation and in so doing also reduce pain; and steroids which can be injected into the affected joint. None of these treatments will actually cure your arthritis, but will reduce the symptoms.

If your arthritis becomes severe, and particularly when the major weight bearing joints, such as knees and hips are affected, your doctor may recommend you see an orthopaedic surgeon with a view to having the joint replaced. Surgery is usually only considered after all other suitable treatment options have been explored. Most replaced joints give no problems for 10- 15 years, longer if you treat them carefully. If they do eventually become troublesome they may need to be replaced – this is called revision surgery.

For more information on osteoarthritis, see Arthritis Ireland’s booklet ‘Living with Osteoarthritis’

■ Secondary arthritis
Secondary arthritis sometimes develops after an injury, which damages a joint. It may develop many years later.

What can you do?
You can reduce pain and stress on your joints by finding exercise and relaxation techniques that work for you. Appropriate exercise can strengthen the muscles which support and protect the joints. If you are uncertain about what kind of exercise to do, a physiotherapist will be able to advise you. If you can move it, you can exercise it.

Massaging painful joints and muscles works for many people as it may help to lower the stresses in the body overall. If you are overweight, you can take some strain off your weight bearing joints by losing weight.

It helps to learn the balance between relaxation and keeping as fit and active as possible. Relaxation classes help some people, as do other complementary therapies, such as acupuncture and aromatherapy.

■ Rheumatoid Arthritis
Rheumatoid arthritis (RA) is an inflammatory disease mainly affecting joints and tendons. Inflammation means swelling and heat. An inflamed joint is swollen, reddened and is warm to the touch. In most diseases, inflammation serves a purpose – it helps healing and, when healing is done, the inflammation goes away. In rheumatoid arthritis the opposite happens.

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

The body’s natural defences (the immune system) are part of the problem in rheumatoid arthritis. It somehow puts itself into reverse and attacks certain parts of the body instead of protecting it. This auto-immune reaction occurs mainly in the joints, but in a flare-up other organs can be affected. It is not known what causes the immune system to react in this way.

What happens?
Rheumatoid arthritis may start suddenly, but more often the symptoms develop slowly over a few weeks or months. While an acute onset of RA may be easier to diagnose, a gradual onset can make diagnosis much more difficult. Morning stiffness and the painful swelling of joints are typical features.
The thin synovial membrane that lines the joint capsule and the tendon sheaths (tubes in which the tendons themselves move) and the bursae (the sacs of fluid that allow the muscles and tendons to move smoothly over each other) become inflamed. The joints and the inflamed tissues then become stiff, painful and swollen.

If your doctor begins to suspect rheumatoid arthritis, you will be asked to have some blood tests done. If some or all of these are positive, or your symptoms persist, you will usually be referred to a consultant rheumatologist for a firm diagnosis and treatment.

Tiredness and a general feeling of fatigue, coupled with early morning stiffness lasting for several hours are very important symptoms to report to your doctor. This will assist in the diagnosis and will help in ensuring that you get the right treatment.

How will it affect me?
However badly and for however long you have the disease, there are some common difficulties. The first is the pain, and loss of strength and movement in the inflamed joints. The second is feeling generally unwell and tired. Stiffness can be bad, especially first thing in the morning or after sitting still for a long time.

Working with all your health professionals and learning how to manage your own arthritis can lessen the impact and help you to remain in control of your disease. You may be able to learn how to develop these skills by attending one of Arthritis Ireland’s self-management programmes.

How is it treated?
Your doctor’s main objective will be to reduce the damaging inflammation. Increasingly, rheumatologists are using disease modifying anti-rheumatic drugs (DMARDs) soon after diagnosis. This is because it is now recognised that these can slow down the disease process, which, in turn, reduces the overall damage it can cause. They can also help you to feel better.

DMARDs are usually given at the same time as other nonsteroidal anti-inflammatory drugs (NSAIDs). If DMARDs do not work for you, you may be entitled to treatment with a newer class of drug called anti-TNF.

Steroids may occasionally be used if the inflammation is severe. Your doctor will always seek to give you the lowest possible effective dose.

The drugs used to control your rheumatoid arthritis have to be carefully monitored with regular visits to the rheumatology department for check-ups and blood tests.

Sometimes joint replacement surgery may be suggested, particularly if the joint is very painful or there is a risk of losing the overall function.

What can you do?
Learning to pace yourself is vital. Acknowledging and accepting help for heavy and difficult tasks will enable you to conserve your energy for the things you can do.

Working towards a balance of relaxation and exercise can make a big difference. Exercise not only helps to retain the range of movement (ROM) in your joints, it also helps to keep your muscles as strong as they can possibly be. A physiotherapist will be able to advise you on suitable exercises.

You can also learn how to make the most efficient use of your joints, whilst at the same time protecting them from further damage. An occupational therapist (OT) will be able to advise you on the use of splints, gadgets and equipment that will assist you with daily living tasks.

‘I don’t think you have to justify yourself, just explain what the reasons are and make sure the right people know. ’

It will also help if the people you live and work with understand your condition – and the frustrations its symptoms can bring. It can be very helpful to discuss your difficulties with other people with RA. Arthritis Ireland’s self-management programmes have enabled people with arthritis to significantly improve their health and wellbeing. Self-management programmes are run nationwide throughout the year, so find out if there’s one near you.

For more information on rheumatoid arthritis, read Arthritis Ireland’s booklet ‘Living with Rheumatoid Arthritis’.

■ Ankylosing Spondylitis
Ankylosing spondylitis (AS) is another form of inflammatory arthritis. It begins by affecting the joints of the lower back. They become inflamed and stiff. ‘Ankylosing’ means stiffening; ‘spondylitis’ means inflammation of the spine. If left untreated the joints of the spine may become fused (bridged by bone) and lose their movement.

What happens?
Ankylosing spondylitis usually starts around the triangular bone at the base of the spine (the sacrum) where it joins the pelvis (in the sacroiliac joint). These joints become painful and inflamed. There will also be some lower back stiffness in the morning.

The spine is made up of a chain of bones called vertebrae. Inflammation starts at the edges of these vertebral joints. As a result of the inflammation, scar tissue forms in the place between the two bones, making the joint stiff. The scar tissue may eventually turn into bone, filling the space between the bones. If this happens, the joint is effectively fused and movement of the spine is limited.

Although most common among younger men, women can also be affected. Like most kinds of inflammatory arthritis it can go into remission, often when people reach their fifties. 

Which joints?
It is usually the joints of the spine, shoulders and, sometimes, the hips that are affected. In a few people, other joints can become involved, such as knees and ankles.

How will it affect me?
It starts with pain, aching and stiffness, usually in the lower back. After a while the pain will go, then reappear maybe further up the back. Movements of the chest may also be limited. These bouts of pain and stiffness may come and go over a number of years and, then, when the inflammation dies down, stop altogether, though the restriction of spine and chest movement persists.

The amount of damage done by the disease depends on how long and how actively you have the disease. Most people have some pain and discomfort but manage a full daily routine. For others with more severe disease, the spinal restriction and inflammation in other joints can be disabling. It is important to get an accurate diagnosis of how much can be done to minimise its effects.

As with other inflammatory diseases there can be bouts of overwhelming fatigue. In addition, the eyes may also become painful and bloodshot. This inflammation is called iritis and needs immediate treatment to prevent any permanent damage.

How is it treated?
Anti-inflammatory drugs can help to reduce pain and stiffness, but the main treatment is exercise. This helps to relieve pain, maintain mobility and prevent the joints from becoming fused into a bad position. A fused spine can lead to the back being permanently bent and will restrict chest expansion. If the hip joints are badly affected, hip replacement may be suggested.

Increasingly, rheumatologists are using disease modifying antirheumatic drugs (DMARDs) soon after diagnosis. This is because it is now recognised that these can slow down the disease process, which, in turn, reduces the overall damage it can cause. They can also help you to feel better.

DMARDs are usually given at the same time as other nonsteroidal anti-inflammatory drugs (NSAIDs). If DMARDs do not work for you, you may benefit from treatment with a newer class of drug called anti-TNF.

For more information about ankylosing spondylitis, read Arthritis Ireland’s booklet ‘Ankylosing Spondylitis’.

■ Fibromyalgia
Fibromyalgia is a common disorder causing widespread pain, aching and stiffness that affects the muscles, ligaments and tendons, but not the joints. It may affect one part of the body or several different areas such as the limbs, neck and back.

What happens?
People with fibromyalgia usually ache all over, although having pain in a number of specified tender points for a period of time helps diagnosis. This can give rise to localised conditions such as tennis elbow.

How will it affect me?
Pain, tiredness and sleep disturbance are the main symptoms. Most people feel the pain of fibromyalgia as aching, stiffness and tiredness in the muscles around the joints. Other symptoms include fatigue, stiffness on waking, waking feeling unrefreshed, headaches, concentration problems and irritable bowels among others.

Many people find fatigue to be the most troublesome symptom. This can make it difficult to do things such as climbing the stairs, doing household chores, shopping or going to work. It an also affect your personal and social life.

‘Having arthritis is exhausting, but I’ve learnt to be patient’

 Research has shown that during sleep, people with fibromyalgia lose the deep, restorative sleep that our bodies need. This sets off a vicious circle of pain and sleep disturbance that can cause depression.

How is it treated?
There is no simple cure for fibromyalgia, but many people find ways of managing the symptoms.

Your doctor can help to treat your sleep disturbance. Any people with fibromyalgia find that antidepressant drugs are effective for chronic pain and they may help to restore a sleep pattern. Antidepressants may help even if you do not have the depression, which often accompanies the condition.

Research has shown that aerobic exercise, such as swimming, improves fitness and reduces pain and fatigue in people with fibromyalgia. Exercise will also help you to lose excess weight, which can aggravate the condition.

For more information about fibromyalgia, read Arthritis Ireland’s booklet ‘Living with Fibromyalgia’.

■ Gout
Gout is a condition where crystals build up in the body and cause joints to become very painful. Once treated, gout is not a problem for most people. What happens? Gout is caused by uric acid crystals in the joints. We all have some uric acid in our blood but most of us pass out enough uric acid in our urine to keep down the amount in our blood. However, some people don’t pass enough, or they produce more in the first place so the level of uric acid in blood and tissue fluids is higher.

When there is too much uric acid in the tissues, it can form crystals. These crystals can form in and around joints. If crystals enter the joint space they cause inflammation, swelling – and severe pain.

Which joints?
Gout commonly attacks the joints at the base of the big toe, but it may affect other joints – the ankles, knees, hands, wrists or elbows.

How will it affect me?
The joint starts to ache, then quickly becomes swollen, red and extremely painful. The attack usually lasts for a few days, then dies down, and the joint gradually returns to normal.

How is it treated?
Anti-inflammatory drugs relieve pain quite quickly and fight the inflammation. Aspirin however, should not be used to relieve the pain because it can increase the levels of uric acid in the body.

Further attacks of gout can be prevented by keeping down the amount of uric acid in your blood. This can be done by losing some weight if necessary, and generally keeping fit.
Cutting out some foods may also help, particularly alcohol and red meat. Other foods are also thought to affect gout so discuss with your doctor if you think there is a problem in your diet. Some people need life-long treatment with a drug, which will lower the uric acid levels in the body. What you need to do will depend on your health and your levels of uric acid, so get your doctor’s advice.

■Polymyalgia Rheumatica
Polymyalgia rheumatica (PMR) is an inflammatory condition affecting the muscles in and around the shoulder and upper arm areas, buttocks and thighs. The cause is unknown.

What happens?
Polymyalgia rheumatica usually starts very suddenly. The stiffness in affected areas usually eases as the day progresses, but often returns in the evenings. In contrast to rheumatoid arthritis the joints are not usually involved, though occasionally there can be an associated inflammation in joints such as the shoulder, hip and wrist. Very occasionally, the arteries supplying the head and neck area of the body may be involved, causing headaches and possible loss of sight. This very serious complication of the disorder requires immediate treatment.

How will it affect me?
Stiffness associated with the condition usually restricts mobility, particularly early in the day, and people experience fatigue. Frequently there is an associated loss of weight and appetite.

How is it treated?
PMR responds dramatically to treatment with steroid tablets taken orally. The symptoms usually ease substantially within 24 to 48 hours of starting treatment and, over time, the dose of steroid will be gradually reduced. Most people require treatment for a period of one to three years. If the condition involves the arteries to the head and neck (cranial arteritis, giant cell arteritis), a higher dose of steroids may be used initially than in straightforward polymyalgia rheumatica.

■ Psoriatic Arthritis
Some people who live with the skin condition psoriasis also develop a form of arthritis known as psoriatic arthritis. It causes inflammation in and around the joints.

What happens?
Psoriatic arthritis can affect most joints, but typically causes problems in fingers and toes, with pitting and discoloration of nails. About a third of people with psoriatic arthritis also have spondylitis – a stiff, painful back or neck caused by inflammation in the spine.

How is it treated?
Anti-inflammatory drugs will help to control the pain and stiffness and you may be offered disease-modifying drugs to attack the cause of the inflammation. With almost all disease-modifying drugs you will need to have regular blood tests and, in some cases, a urine test. Some anti- TNF drugs are now being used to treat this condition. Steroid injections are often recommended for particularly troublesome areas.

Treatment for the skin is usually with ointments, but if these don’t help you may need tablet treatment and light therapy.

Exercise is very important to help prevent weak muscles and stiff joints. However, rest is equally important.

The pain can get you down and cause stress, anxiety and depression. Counselling can help as well as relaxation techniques to help you to deal with stress.

For further information on psoriatic arthritis, see Arthritis Ireland’s booklet ‘Psoriatic Arthritis’.

■ Systemic Lupus Erythematosus
Systemic lupus erythematosus (SLE or lupus) is a disease in which the body’s natural defences (the immune system) are upset. Cells and antibodies, which are in the blood to defend the body against infection, begin to attack it instead and cause inflammation. Lupus is a systemic disease – that is, it can affect many different parts of your body.

What happens?
Lupus may begin with an obvious, bad attack. It can also begin very mildly. Because it has symptoms like many other illnesses, it can be frustratingly difficult to diagnose. Often, other diseases with somewhat similar early symptoms have to be eliminated.

Lupus occurs mostly in younger women, so a common question about the disease is whether it makes pregnancy risky. If you have lupus and are thinking of becoming pregnant, you should certainly get your doctor’s advice. During pregnancy, any drug treatment needs to be carefully controlled and may need to be changed.

Since lupus can flare up during pregnancy and in the period immediately after the birth, you will need to keep in close touch with your doctor throughout.

How will it affect me?
Lupus can cause all sorts of different problems and varies enormously from one person to another. Aches and pains in the joints, sometimes with joint inflammation, are the most common initial symptoms.

It is also a disease, which may come and go over many years, and it may sometimes disappear of its own accord.

When the disease is active, it is rather like having flu. You feel feverish and tired. Almost everybody with lupus also gets joint and muscle pains because the joints become inflamed. But lupus hardly ever causes any joint damage. The tendons, too, often become inflamed and stiffen so, for example, you may not be able to straighten out your thumb or fingers.

Skin rashes are common and may worsen after being in the sun or ultraviolet light. In fact, sunlight can sometimes cause the disease to flare up. Lupus can also cause inflammation of the linings of the heart and lungs and this can cause chest pains or breathing difficulty. Sometimes the kidneys can become affected.

How is it treated?
Many different drugs can be used to treat lupus. Steroids, the family of disease modifying anti-rheumatic drugs (DMARDs) and anti-malarial drugs are commonly used. Once a suitable drug treatment has been identified, most people find the effects of lupus are considerably lessened.

■ Difficulties diagnosing inflammatory arthritis
Inflammatory arthritis is often difficult to label in the early stages and our diagnosis may evolve with time. General categories like seronegative arthritis (given when you test negative for rheumatoid factor) may be used to describe your condition to begin with. Later, as the pattern of illness establishes, it may be possible to be more specific about the diagnosis – which could be rheumatoid arthritis, lupus or psoriatic arthritis, for example.

■ Arthritis in children
Approximately 1,000 children in Ireland have a form of arthritis. Most kinds of childhood arthritis come under the general heading of juvenile idiopathic arthritis (JIA). JIA involves inflammation, pain and swelling in one or more joints for at least six weeks. You may hear it referred to as juvenile arthritis. The causes are unknown.

The most common forms of JIA are listed here.

● Oligo-articular JIA is the most common kind of childhood arthritis and affects four or fewer joints in the body. A child with this sort of arthritis doesn’t usually become unwell – the problem is more or less limited to swollen, painful joints. But eye problems are quite common and specialist eye checks are, therefore, needed.

This type of arthritis tends to affect large joints such as the knees, ankles and wrists and may result in pain and swelling of the joints.

The outlook for most children with oligo-articular juvenile arthritis is good. Although some children will develop joint damage, the majority get better and grow up to lead ordinary lives.
 
● Polyarticular JIA is another kind of juvenile arthritis and affects many joints (more than five). It can start at any age from a few months onwards and usually spreads from one joint to another quite quickly – often within months. Sometimes children with polyarticular JIA are also generally unwell with a fever and perhaps a rash.

● Systemic onset JIA is a type of arthritis that begins with systemic symptoms such as fever, rashes, lethargy and enlarged glands. Systemic means it can affect the whole body. Early signs are often mistaken for an infection. This form of the disease affects children of any age.

Treatment for children with arthritis is usually much the same as for adults, but the problems, which crop up in everyday life can be very different. Children with arthritis need to lead as ordinary and full a life as they can. Keeping school and social life going is extremely important, although there may be a need to find some alternative social activities.

Exercise is especially helpful and a lot of children with arthritis benefit enormously from swimming. But most of all, it is family support that helps a child with arthritis. Above all, young people need to be part of their own age group and not to be seen as different.

Letting young people with arthritis develop their own independent coping skills is vital. It is all too easy for families to be over protective. Most young people can compete intellectually with their peers and develop relationships as they move towards adulthood.

‘I’m very lucky that my parents don’t wrap me up in cotton wool. They let me live my life’

Arthritis Ireland produces three booklets that you may find useful; ‘When a Teenager has Arthritis’, ‘When a Child has Arthritis’ and ‘Tim has Arthritis’ and provide a wide range of supports to children, young people and their families affected by arthritis. Further information is available in the Juvenile Arthritis section of the website.

If you would like information about a form of arthritis that is not mentioned in this booklet, please call the Arthritis Ireland Helpline on LoCall 1890 252 846 between 10am and 4pm Monday – Friday.

Treatment

■ The right treatment for you
Once you have been diagnosed as having arthritis, it is a matter of finding the right treatment for you. This will depend on the kind of arthritis you have, how bad it is, how it is affecting you and how you respond to whatever treatment you have.

It can sometimes take time to find the treatment which works best for you. There may be some periods when different treatments have to be tried and their effects monitored. And, over time, your treatment may need to be adjusted to meet your changing needs.

‘I’ve been helped a great deal by all the professionals I’ve come into contact with’

The part you play
Finding the right treatment will require the development of a good relationship with all your health professionals to enable a sharing of knowledge – yours is most valuable, so don’t be afraid to speak out. You should be looking to develop an equal partnership. The part you play is also important because treatment for arthritis is not simply a matter of taking the tablets – you may need physiotherapy as well as drug treatment. If you think you would benefit from getting help from a physiotherapist or an occupational therapist, don’t be afraid to ask.

‘There are lots of different ways of dealing with pain. You’ve got to explore the options, and find the way that’s right for you’

You will also need to learn how to care for yourself and your joints. Looking after yourself, adapting and managing everyday life goes along with medical treatment.

■ Who is involved?

Your GP
The first person to become involved in your treatment will be your GP. This will be your first step towards getting a diagnosis. Your GP may be able to establish quite quickly what your diagnosis is and be able to offer you immediate treatment. If, however, your GP is unable to do this, he or she may organise further tests, usually a simple blood test and some X-rays at your local hospital.

‘No doctor is a mind reader. You’ve got to speak out, say what is worrying you. Nobody else can do it for you’

In addition, if you have inflammatory arthritis, your GP will refer you to a consultant rheumatologist.

Hospital consultants
These are senior doctors who have undergone specialised training in the diagnosis and treatment of a particular group of disorders. A consultant rheumatologist specialises in arthritis/rheumatic diseases and an orthopaedic surgeon specialises in the surgical treatment of bone and joint disorders.

If your GP has not referred you for more specialist treatment and you believe it would be beneficial, you can ask to be referred. For your first appointment you will be seen by the consultant or another member of the specialist’s team to establish the diagnosis and to identify a suitable treatment plan.

Your treatment plan may require you to be seen regularly to enable monitoring of both your disease and your treatment. This monitoring is aimed at ensuring that your treatment remains right for you and is, therefore, giving maximum benefit, whilst at the same time keeping a careful watch for any side effects that may occur from your medication.

Physiotherapists
If you are referred to a physiotherapist, at your first appointment you will be given a full assessment of your joints, muscles, posture and how you walk and generally move around.

You will be asked about your pain and what problems you might have. Taking into consideration the general state of your health and arthritis, a treatment plan will be decided upon and agreed between you and your physiotherapist.

Treatment and general advice may include exercise, hydrotherapy, mobilisation techniques, relaxation techniques, pain relief, TENS, splinting, walking aids and advice on posture.

Occupational therapists
If you are experiencing difficulty with day-to-day tasks like washing, dressing, cooking and cleaning you will benefit from visiting an occupational therapist. They have a wealth of expertise on what equipment is available to assist you with a particular task. They may also be able to supply, on temporary loan, some of the more expensive items.

Your GP or consultant can put you in touch with an occupational therapist. There may be one at your local hospital or they may visit you at home.

For more information on getting the best from your appointments and treatments, see Arthritis Ireland’s booklet ‘Let’s Talk Arthritis’.

■ Making the most of treatment
It is important that you make the most of any consultation, and that you understand and feel confident about any treatment you are given.

Before seeing any doctor, think about and write down what you want to say and ask. Take your list with you. It will jog your memory and give you confidence.

If an appointment comes to an end before you have got through all your questions, you can always ask for another appointment. If you are not sure about something that has been said to you, don’t be afraid to say so, and ask for a more detailed explanation.

If any treatment does not seem to be working or if you feel it is not right for you, go back to your doctor and say so. If you feel you have given it a fair try and are still unhappy about it, then you should discuss this with your GP or your consultant.

Being straightforward, reasonable and clear about your needs can help you make the most of the professional expertise available to you. It may help you to take a friend or relative to your appointment with you. Most doctors and health professionals are happy for you to do this if you explain that you feel it will help you.

■ Treatment with drugs
There is a vast range of drugs used to treat arthritis. Whatever drug you are prescribed, you will need information from your doctor about what it is and how it may help.

Painkillers (analgesics)
These are pain-relieving drugs such as paracetamol that do not affect the arthritis itself, but help relieve the pain and stiffness. They come in varying strengths and the stronger ones are only available on prescription.

Paracetamol, which is available over the counter, is the simplest and safest painkiller and the best one to try first. Many pain-relieving drugs, including pain relief gels can be bought over the counter.

Never take more than the recommended dose and if in doubt, talk to your pharmacist or doctor.

Non-steroidal, anti-inflammatory drugs (NSAIDs)
These reduce inflammation. They can also give relief from pain and reduce joint swelling. There are many NSAIDs, but you may be prescribed ibuprofen, diclofenac, naproxen or indometacin among others. NSAIDs are more likely to cause side effects – especially indigestion and diarrhoea. They can also cause stomach bleeding, so you may need to be prescribed an anti-ulcer medication at the same time, (known as proton pump inhibitors). Some concerns have been raised about an increased risk of heart attack associated with using NSAIDs. If you are worried, consult your doctor.

Cox-2 inhibitors are a type of NSAID, designed to be safer for the stomach. They include celecoxib (Celebrex), etodolac (Lodine SR), etoricoxib (Arcoxia) and meloxicam (Mobic). However, concerns have also been raised about their side effects, including increased risk of cardiovascular problems, especially for people with a history of heart disease or stroke.

Although most Cox-2s are still available on prescription, their use is being strictly regulated. You will need to discuss with your doctor whether this type of treatment is suitable for you.

More powerful drugs
Disease modifying and immunosuppressive drugs are used for those types of arthritis which involve auto-immunity, including rheumatoid arthritis and lupus. Immuno-suppressive drugs help to dampen down the immune system’s attack on the joints. They have to be carefully monitored because of possible side effects.

Drugs used to treat rheumatoid arthritis include methotrexate (Maxtrex), gold (Myocrisin, Ridaura), penicillamine (Distamine), sulphasalazine (Salazopyrin,Sulazine), azathioprine (Imuran, Azamune, Immunoprin), cyclophosphamide (Endoxana), cyclosporin-A (Neoral, Sandimmun), Auranofin (Ridaura), Leflunomide (Arava), Hydroxychloroquine (Plaquenil)and anti-malarial drugs. In lupus, azathioprine, cyclophosphamide and other similar drugs have proved helpful.

Biologic response modifiers
Biologic response modifiers, also known as biologics, are medications that are designed to prevent or reduce the inflammation that damages joints. Biologics target molecules on cells of the immune system, joint and the products that are secreted in the joint, all of which can cause inflammation and joint destruction. They include etanercept (Enbrel), infliximab (Remicade), adalimumab (Humira), rituximab (MabThera), abatacept (Orencia) and tocilizumab (RoActemra). Research on the drugs has been very promising, but they are not appropriate for everybody with arthritis. They can offer new hope to some people with severe rheumatoid arthritis, ankylosing spondylitis or psoriatic arthritis who have not been helped by other disease-modifying drugs.

Steroids (cortisone, prednisolone)
Steroids can be very effective in reducing inflammation. But if taken long term, steroids can cause side effects.

If steroids are prescribed over a longer time, careful monitoring is needed and you must never suddenly stop taking them. You should carry a blue steroid card with you. If you have not got one, ask your pharmacist.

Steroids can also be given by injection into an inflamed joint and they can be injected directly into the veins during a flare-up. Higher doses of steroid taken over a long period can cause osteoporosis, weight gain, diabetes and high blood pressure. Your doctor will try to give you the lowest effective dose and you will be carefully monitored.

■ Taking drugs
Taking drugs can be a worrying business. Yet for many people with arthritis, drugs are very effective. When taking drugs it is very important that you follow these guidelines:

• ask questions about the treatment being prescribed
• be absolutely clear about how much to take, how often and when
• ask whether the drugs are best taken with or after meals or whether they should be taken on an empty stomach
• ask whether the drug will act immediately or only after some time
• ask about any possible side effects and what you should do if they occur.

If you are thinking of starting a family it is very important you discuss this with your doctor. He or she may recommend that you cease taking some of your drugs several months before conception.

If you are already taking some kind of medicine and a new sort is prescribed, check that the two can be taken together. Not all medicines mix. Drugs may also interact with some food supplements and herbal remedies.

■ Surgery
While some people with arthritis will never need to have surgery, others find it is very successful in relieving pain caused by arthritis, improving mobility and reducing stiffness. It is usually the last resort after other treatment options have been explored.

You should discuss what is being offered fully with your consultant. Ask for the information you need so that you can understand the implications and take well-informed decisions about whether you should go ahead. You will feel more confident if you know what is involved and this can greatly enhance your recovery.

Surgery can be minor – to assess damage done or to smooth joints and repair cartilage – or it can be more intrusive such as a joint replacement.

Other operations for arthritis include the removal of the inflamed lining of the joint cavity (synovectomy); removal of painful coverings from tendons; the repair of damaged tendons; removal of bone to relieve pain; release of trapped nerves; and the fusing of a joint to make it more stable.

There are always risks associated with surgery.

Recovery may take a lot of time and effort on your part but, for most people, surgery brings about a dramatic improvement in their pain levels and quality of life. You can find further information in Arthritis Ireland’s booklet ‘Surgery and Arthritis’.

■ Complementary and alternative therapies
Many people with arthritis try a range of complementary or alternative therapies in addition to the conventional drugs prescribed by their doctor. What works for one person may well not work for another.
 
Complementary therapies will not offer you a cure, but they may ease pain, stiffness and help you to deal with some of the unwanted side effects of taking drugs. Complementary therapies can also help you to have a positive attitude and help you to relax and change your lifestyle for the better.

There is a multitude of different therapies. Some of them are thoroughly reputable and regulated by statutory bodies. At the other end of the scale are therapies making highly dubious claims with little or no evidence to back them up. Details about some therapies are included further on.

Massage
Massage has many advantages, it can help relax and tone the muscles, improve blood flow and leave you feeling relaxed and cared for. Your partner or a close friend could help out, or you can go to a professional masseur. Self-massage is also possible (gently kneading the muscles in a painful area to increase blood flow and bring warmth). Massage around an inflamed joint, not the joint itself, and stop if pain develops.

Acupuncture
Recently, acupuncture has gained increasing acceptance by professionals. This ancient Chinese technique involves inserting very fine needles into parts of the body. These feel like a little pinch and are aimed at suppressing pain and triggering the release of endorphins. Ask your doctor to refer you to a qualified professional.

Hydrotherapy
Usually overseen by a physiotherapist, hydrotherapy allows you to exercise the joints and muscles in a warm water pool. The warm temperature aids muscle relaxation and eases pain in your joints. Because the water supports your weight, the range of movement in your joints should increase and pain decrease.

Tips for finding a therapist
● if you have a medical card, ask your GP whether the treatment is covered in the scheme.
● ask how much treatment will cost and how long it will take
● find out whether the practitioner is a member of a professional body
● find out whether they have insurance in case something goes wrong
● ask about their training and how long they have been practising
● beware of anyone who suggests you stop taking prescribed drugs
● don’t stop taking prescribed drugs without discussing it with your GP
● tell your GP about any complementary therapies you are receiving.

You can learn more by reading Arthritis Ireland’s booklet, ‘Drugs and Complementary Therapies’.

Making a Difference Yourself

Getting medical help and treatment for arthritis is important, but so too is helping yourself. There is a lot you can do to minimise the overall effects of your arthritis on your everyday life – to control your arthritis rather than letting it control you.

Arthritis Ireland runs a range of self-management programmes, such as Living Well with Arthritis, Working with Arthritis and Breaking the Pain Cycle, to enable people to manage their condition more effectively, dramatically improve their quality of life, gain back control of their life and help build their confidence. Contact Arthritis Ireland for more information on LoCall 1890 252846 or by email at helpline@arthritisireland.ie.
 
Below are some areas in which you can make a difference to your life by making small but important changes.

 ■ Your general health

Diet
Eating a healthy diet is a basic way of keeping well. Your body needs a range of nutrients and to get these you need to eat a variety of foods. By eating a variety of food you can be fairly sure you are getting all the nutrients you need.

If you are overweight you will probably be advised to try and lose some weight to take the strain off your joints. If you need help or advice on diet you can ask to be referred to a dietician. There is a lot of debate about whether diet has anything to do with the causes and effects of arthritis.

Whatever diet you try, check first that it is going to give you the range of nutrients you need, and never begin a diet which involves stopping medication without consulting your doctor. Read Arthritis Ireland’s booklet on ‘Healthy Eating and Arthritis’ for further information.

Exercise and rest
Stiff joints, which aren’t exercised, become stiffer and may, in the end, stiffen up altogether. But any exercise you do has to be the right sort. For many types of arthritis, gentle, regular exercise is very helpful and very important. It keeps you mobile, it reduces pain, it relieves stress (because it is relaxing), and it protects your joints by keeping the muscles strong. But the wrong sort of exercise can put strain on your joints and damage them further. A physiotherapist can help advise you on a safe routine.

Resting is also important, especially when there is a lot of inflammation or your arthritis flares up badly. However, guard against the danger of resting so much that you seize up altogether. Try to find the right balance. Nobody can rest or sleep well when they are tense and tension always makes pain worse.

Learning to relax can make a huge difference to you, and will become another of your basic self-management skills. You can learn simple relaxation techniques, which you can then practice regularly, and use when needed.

Try asking your GP, or at your local library about local relaxation classes. There are also many books and CD’s about relaxation, which you can borrow from your library, or buy. For more ideas on exercising when you have arthritis, check out Arthritis Ireland's 'Be Active with Arthritis' exercise DVD and booklet specifically designed for people with arthritis, available to purchase in our online shop.

Looking after your joints
Inflamed or damaged joints need to be cared for and protected. Keeping healthy is part of this, but you also need to avoid straining your joints by doing things awkwardly or doing more than you are comfortably able. This probably means learning different ways of doing everyday jobs, and adapting your life in a number of ways.

You may, for example, have to give more thought to the clothes and shoes you wear, to the way you lift, grip and carry things, to the way you arrange your home or place of work. An occupational therapist can help with all of this.

■ Everyday life
It can be frustrating to find that some of your everyday tasks are becoming difficult and complicated. Adapting isn’t easy, and it isn’t something you learn overnight, but it will make life easier. Try to set about solving your problems in practical ways that suit you.

‘If I’m going to have time and energy to do the things I want to do, then I’ve got to accept help with the tasks that I can’t manage’

Equipment and adaptations
There is a wide range of equipment available to help you. You can save time and energy by using some simple adaptation or helpful piece of equipment, or by asking for help. You can find out about the range of equipment available and get more information and advice from:

• an occupational therapist who can look with you at the sort of difficulties you face and help you to work out new ways to manage them – if necessary with some kind of equipment or adaptation
• your local Citizens Information Centre can provide information, advice and advocacy on your entitlements and social services. Visit www.citizensinformation.ie or LoCall 1890 777 121
• you may be eligible for a Housing Adaptation Grant or Mobility Aids Grant, available from the housing department of your local authority
• there is equipment available to help with activities such as turning taps, opening tins, bottles, jars, cutting vegetables, bathing and dressing. Assist Ireland provides information on these. Visit www. assistireland.ie or LoCall 1890 277 478
• Arthritis Ireland's Easy to Use Programme provides information and advice on practical, easy to use products and services that can make it easier for you to live day to day with your arthritis. 

Getting Out and About

Arthritis can affect many different areas of your life including getting out and about, and even your work. However there is help available to enable you to live your life to the full as much as possible. There are a great many benefits available to people who are sick and/or disabled, and it is always worth checking that you are claiming all that you are entitled to.

■ Driving with arthritis
Being able to drive gives people with arthritis greater independence. Although driving may become more difficult, there are many adaptations or extras you can add to make it easier on yourself.

There are a few things you can try to make driving easier. An automatic gearbox and power steering will reduce strain. Minor adjustments, such as a padded steering wheel, a headrest, extra side-mirrors or a wide-angled mirror may make driving easier.

There are various means tested supports available through the HSE including grants for adapting a vehicle, the Disabled Person’s Parking Card and tax relief for necessary adaptations to vehicles. The Irish Wheelchair Association, www.iwa.ie and the Disabled Drivers Association, www.ddai.ie , provide advice and information on all aspects of motoring.

If relying on public transport you can apply for the Free Travel Pass, which allows you to travel for free on all public transports and selected private services.

■ Work and education
Only you can decide how much you want to tell people at work about your arthritis. It may not affect your work at all – other than time off for hospital appointments or surgery – but hiding it and struggling on if you have difficulties could make your arthritis worse.
The best policy is to be positive, honest and clear about your needs, and help people understand what arthritis means for you.
Smarter ways of working will help protect your joints and conserve energy. They can include:

• organising your work – rearranging the work area, using computer equipment correctly, taking regular breaks, relaxing, pacing yourself and varying tasks
• flexibility – perhaps working a shorter day or fewer hours, or being based at home some of the time if that fits in with your job.

‘I’ve got a good, comfortable chair and my desk is set up correctly, which makes such a difference’.

The following legislative acts protect your rights as an employee: the Employment Equality Act 1998, the Equality Act 2004, the Equal Status Act 2000 and the Disability Act 2005. The legislation states that an employer is obliged to take appropriate measures to enable a person who has a disability to have access to employment, to participate or advance in employment and to undertake training unless the measures would impose a disproportionate burden on the employer.

FÁS offers many schemes, job and training opportunities to help you find and retain work. Through FÁS you can access a wide range of supports for people with disabilities in employment; including adaptations grants, disability awareness training for your employer and grants to help you stay at work when you have become disabled while in employment. You can access FÁS services by visiting your local FÁS office, by calling the freephone telephone service on 1800 611 116 or by connecting to the FÁS web site www.fas.ie.

The Irish National Organisation of the Unemployed, www.inou.ie, has produced many booklets that are relevant to getting back to work. Their Working for Work booklet examines welfare, work, education and training options for unemployed people.

The Working with Arthritis programme, run by Arthritis Ireland is a course for people who are looking to return to work or who are currently in employment, education or training and seek support in facing the challenges of the workplace.

 

Feelings about Arthritis

Your life is a great deal more important than your arthritis. Yet having arthritis obviously affects you, and no one finds that easy to accept. There can be times when arthritis seems to dominate not just your life but also that of your family and friends too. Try not to let this happen. Carrying on with your life is very important.

‘You need to get on with life and not dwell on it all too much’

 Along the way, there will almost certainly be times when you feel disheartened, angry, resentful, frustrated, lonely or downright depressed. This is perfectly normal.

‘Getting used to living with pain takes some doing’

A number of things may help.

• talking about how you feel can ease the burden. Talk to someone who understands the need to talk and the way you feel
• try to look at the reasons why you feel as you do. Think about what your feelings really are and what is causing them
• people with arthritis are often under stress. Stress can make you feel bad. Learning ways to relax can help. There are many relaxation methods, which, once grasped, not only ease stress but also prevent it
• if you are feeling depressed, and your depression simply won’t lift, you should look for help. If you don’t want to talk to anybody close to you, think about going to a professional counsellor
• for advice on how to deal with the complex mix of emotions you may be feeling read Arthritis Ireland’s booklet ‘Coping With Emotions’
• call The Arthritis Ireland Helpline on LoCall 1890 252 846 between 10am and 4pm Monday – Friday.

‘Having arthritis has given me the chance to take a fresh look at my life, and I do feel very positive about that’

It is possible for you to control your arthritis rather than letting it control you. If you have any questions about living with arthritis, contact Arthritis Ireland.