To know the disease is the commencement of the cure.

I am sure many readers are only too familiar with explanations about rheumatoid arthritis (RA). Nevertheless I feel that I need to explain about it to those people who are newly diagnosed or those who have not encountered the disease first hand.

Rheumatoid arthritis is a disease that occurs all over the world. The National Rheumatoid Arthritis Society (NRAS)1 states that it affects at least one per cent of the population in the UK and according to the Arthritis Research Campaign (ARC) (2002)2 ‘about three in every 100 people in Britain have rheumatoid arthritis.’ There are more females with the disease than males and onset is often between 30–55 although it can occur at any age. A study in 19993 stated, ‘Rheumatoid arthritis is rarely seen as a serious public health issue, yet it is the single largest cause of disability in the UK.’

There is no known cause for rheumatoid arthritis and it is not directly inherited, although some predisposing factors may be. This means that it is likely that a genetic trait is then triggered by other factors like an infection, or a chemical in food, or an injury, or stress or any other as yet unknown trigger. Maybe two or three triggers are needed together, no one really knows. All that is known is that rheumatoid arthritis is an autoimmune disease. This means that the immune system is faulty and does not behave in the way that it should.

THE IMMUNE SYSTEM

The immune system is an intricate mechanism that enables our body to defend itself against bacteria, viruses and other organisms that want to invade it. A healthy immune system knows which particles are foreign to the body and which ones belong. In order to protect the body it will attack outsiders that do not belong. The body also protects itself when there is damage caused by an accident resulting in a burn or a broken bone. In this case inflammation occurs as a necessary part of the repair process. In rheumatoid arthritis something goes wrong and the immune system attacks its own joints.

THE FUNCTION OF THE JOINT

In order to understand what happens when rheumatoid arthritis attacks the joints it is first necessary to understand a little about what a joint is and what its function in the body is. I have drawn a picture of a simple joint to show what a joint looks like and what it consists of (see Figure 1). Joints can be simple, as in the elbow joint which only has movement in one direction, or complex as in the shoulder, a joint that can be moved in many ways. In any case joints are always found at the point where different bones meet so that the bones on either side of the joint can move independently. For example, there is a joint between the upper arm bone (humerus) and the lower bones of the arm (radius/ulna bones) so that we can move the lower part of the arm independently from the upper arm. The cartilage and fluid act as a shock absorber between the bones and this helps to protect them.

HOW RHEUMATOID ARTHRITIS AFFECTS THE JOINT

During a flare-up of rheumatoid arthritis the synovial lining of the joint becomes inflamed although it is not known what triggers off the inflammation. The synovial fluid that lubricates the joint, keeping the cartilage slippery, is overproduced. The lining of the joint becomes thicker and the cartilage is destroyed. The cartilage normally acts as a shock absorber between the bones, so there will be more pain on movement when it is destroyed. Eventually if it is all destroyed the bones will fuse together, preventing the joint from working at all. Even if the bones do not fuse together the increased amount of fluid in and around the joint means that the joints become swollen and feel uncomfortable. This restricts movement at the joints even before actual damage occurs. The joint capsule and ligaments also become stretched and loose and this leads to unstable joints and deformities.

RHEUMATOID ARTHRITIS AND OSTEOARTHRITIS: THE DIFFERENCES

I have found that many people confuse osteoarthritis and rheumatoid arthritis. Although they both cause damage to joints the damage occurs for different reasons. Rheumatoid arthritis differs from osteoarthritis (OA) because in rheumatoid arthritis it is the faulty immune system that causes inflammation whereas in osteoarthritis the joints become damaged through wear and tear (although inflammation may still occur). This means that osteoarthritis normally starts later in life than rheumatoid arthritis although osteoarthritis may start at 40. (People with rheumatoid arthritis may also have osteoarthritis) In rheumatoid arthritis the joint damage is usually symmetrical but in osteoarthritis it normally is not. Another difference is that some rheumatoid arthritis sufferers may feel tired or have a feeling of being generally unwell when the inflammation occurs. In rheumatoid arthritis it is also possible to have inflammation in other organs as well as the joints, for example, the lungs and blood vessels, but usually it is the joints that are affected.

THE IMPORTANCE OF AN EARLY DIAGNOSIS

It is important to go to the doctor and obtain a diagnosis as early as possible if joint pain occurs. As explained previously untreated inflammation can lead to joint destruction and deformities. The early signs of rheumatoid arthritis are usually

• pain or discomfort in the fingers or feet; and
• early morning stiffness.

The stiffness makes the limbs feel heavy and the joints feel puffy, movement becomes sluggish and it is more difficult to move the joints at all. The stiffness tends to reduce when the joints are gently moved. The disease often progresses intermittently with

• relapses – when the symptoms occur
• and remissions (when the symptoms stop for a period of time).

Occasionally the disease can occur rapidly with extensive pain in many joints.

The diagnosis will be done by taking a history of signs and symptoms from the client and performing a blood test, both of which are essential for the diagnosis. The development of the disease will vary from person to person. According to the Arthritis Research Campaign (ARC)4 20 per cent of people with rheumatoid arthritis will have a very mild form with no damage or very minimal damage to their joints. Most people will have damage to some joints and about five per cent will have a severe form of the disease with extensive joint damage and quite often some inflammation in other organs of the body too. Many people will have periods of remission when they will experience no signs of the disease. Early treatment and some adaptations to lifestyle should minimise joint damage and the effects that the disease has on everyday life.

In my own case I was not told that I had rheumatoid arthritis although I am sure the doctor would have known. Possibly he thought that it would be depressing for me to know that I had a long-term and deteriorating (chronic) condition and that I might do better without the knowledge. The problem was that I had no medication to slow the disease down and I had no therapy or guidance to tell me that I was probably making my condition worse by carrying on and ignoring it. Of course it did actually go away for four years but with rheumatoid arthritis you can never tell when it is going to return.

THE UNPREDICTABILITY OF RHEUMATOID ARTHRITIS

One of the main problems of the disease is its unpredictability. Even in a period of active disease it will vary from day to day and it is not often possible to know why. It could be the weather, the amount of stress on a joint, diet, an infection or any other as yet unknown factor. Research has been undertaken in order to understand the triggers of rheumatoid arthritis onset and flare-ups. However there do not appear to be any very conclusive answers.

Rheumatoid arthritis and the weather

As far as the weather goes many people claim to feel worse in hot weather or wet weather or at the onset of a rainy period. A study by Dr Hollander in Philadelphia5 discovered that rapid changes in barometric pressure occurring within 6–12 hours caused a greater increase in symptoms for rheumatoid arthritis patients than slower changes over 24 hours. He claims that there is no other evidence to support any other effects of the weather in exacerbating or reducing symptoms. In my own case I do not feel that the weather makes much difference although I have sometimes noticed that one foot becomes very painful when a stormy period is building up in the atmosphere.

The significance of stress

Some research has been carried out to evaluate the role of stress in rheumatoid arthritis but again no conclusions can be drawn. One study by Marcenaro et al6 in Italy in 1999 claimed that macro and micro stressful life events preceded rheumatoid arthritis onset in 86 per cent of the cases that they studied. Macro events are very significant things like a birth, death, divorce, house move etc. Micro events are extensive small stresses that accumulate, like difficulties with work or family. Yet a study by Haller et al in 19977 produced different results. Haller stated that ‘the course of rheumatoid arthritis is influenced neither by the number of life events nor by the extent of stress caused by these events.’ In my own case I am open minded but there are some indications of stressful events playing a part, as I will explain later on.

Rheumatoid arthritis and diet

The subject of diet will be discussed briefly later but there is some evidence for eliminating certain foods. Most of the studies that I found that evaluated diet and rheumatoid arthritis examined vegetarian or vegan diets. Some showed that these diets benefit people with rheumatoid arthritis but I am not sure whether other foods have not been found as beneficial or whether there have not been enough scientific studies on diet issues generally. The Arthritis Research website indicates that certain diets may be beneficial for some people (see Chapter 2 for further details). In research investigating the role of supplements, some studies indicate positive results from fish oils (see Chapter 3).

Fighting infections

As far as infections go I have noticed that sometimes my symptoms are worse if I am fighting an infection. Often the infection does not develop but the rheumatoid arthritis gets worse. I have noticed that many people who have rheumatoid arthritis seldom have colds and flu and similar infections, probably because of the way the immune system reacts. This is because those of us with rheumatoid arthritis have immune systems that are very active. In a normal immune system there would be extra activity if the body was fighting an infection, but with rheumatoid arthritis the immune system reacts more strongly and the reaction is also likely to carry on longer. This probably means that those of us with rheumatoid arthritis are excellent at fighting off infections but may get symptoms of rheumatoid arthritis such as swelling, pain, stiffness and fatigue instead. It should be noted here that some types of medication suppress the immune system and may also reduce this reaction to some degree (see Chapter 3).

A PERSONAL SCENARIO

In looking for triggers the problem is there are so many variables and it seems to be very difficult to work out any obvious cause that aggravates symptoms. Even if one person manages this it cannot be generalised to anyone else. This lack of predictability means that sufferers end up feeling powerless and also frustrated because of the difficulty of planning ahead.

My rheumatoid arthritis started with severe pain in my hands and feet and I noticed that I could not shake my wrists whilst I was doing PE with children on my teaching practice (I was on a teachers’ training course at the time). About a month or two later, when I was working in a park as a gardener, the pain became even more pronounced. All the other staff in the park were men who were very chauvinistic in their attitude. They thought that cleaning the house, looking after children and cooking was the only work that women should do. I had to prove that I was up to the job. This was difficult to do because every day my feet hurt and the strength in my hands was so reduced that even lifting a large teapot in the staff kitchen was difficult. At night times I put my hands under my pillow to try to reduce the pain so that I could sleep. In the day I carried on digging, hoeing, pruning and driving a tractor. I thought it was only a temporary problem and that it would go away. I did not see a doctor until four months had passed.

Looking back, going to college may have been the factor or one of the factors that triggered the rheumatoid arthritis. I had begun to realise that teaching was not really for me and I was dreading the teaching practices. The rheumatoid arthritis was still active when I went into hospital for an unrelated operation during the following December. During the Christmas holidays I decided to leave college, and the stress went away and with it the rheumatoid arthritis It may have been the rest and the anaesthetic, or the removal of the stress, or a combination of these things. The rheumatoid arthritis did not reoccur for four years.

The next trigger appeared to be connected to the birth of my three daughters as the rheumatoid arthritis returned when each of my children had reached the age of three months. This personal anecdotal evidence is supported by other studies. A review by Hampl and Papa7 at Arizona State University concluded that the benefits of pregnancy have been known for decades but only recently have lactation and prolactin been indicated as predictors of onset, flare or relapse of arthritis. It is stated that there is an increased risk of rheumatoid arthritis particularly after the first pregnancy in susceptible women. This seems to have been the case for me. Subsequently the relapses and remissions continued every couple of years for unknown reasons.

Over the last 15 years I have had no remissions and the condition just carries on gradually attacking the joints in my hands and feet, and I also have attacks on my shoulders and knees. The disease is very unpredictable in that it can occur in any joint at any time. I have tried to look for triggers and treatments but with limited success. This situation has made me feel powerless at times and I expect many of you can identify with this feeling. I try to take back some control by being positive, adapting my lifestyle, exercising and working, enjoying leisure pursuits and travelling. Generally I try to get on with life and forget my disabilities. It is very important to do this so that you feel you have some control over the condition and therefore over your life.

My initial contacts with an Occupational Therapist put me on the right track for understanding my condition and achieving a good quality of life. In the next chapters I will outline and discuss the ideas that I have learnt as a patient and also during my training and work as a therapist.