‘Pain is a personal experience common to all individuals yet unique to each.’ (Autton)1

One of the key issues for anyone who has rheumatoid arthritis is dealing with pain, stiffness and discomfort. Many people with rheumatoid arthritis rank pain as the most important symptom to be treated. According to ARC2 50 per cent of people with arthritis say that the worst aspect of having arthritis is the pain. One of the ways that rheumatoid arthritis is diagnosed is by taking a history of a patient’s symptoms and these usually include pain, discomfort and/or morning stiffness. Along with these symptoms there is sometimes a feeling of malaise, a feeling that everything is too much of a struggle, particularly at the start of the day. It can therefore be difficult to move around, go to work or carry on activities of daily living.

COPING WITH PAIN

The dilemma for anyone suffering from rheumatoid arthritis is that it is preferable to have a job or an occupation because it gives you a reason to get out and about in the morning. This in turn means that muscles, joints, ligaments and tendons are used regularly and do not weaken so quickly. It is important to realise that the stiffness and pain often subside to some degree once you start moving unless you have an intense flare-up. In this case it is better to rest for a few days. Exercise is also good for bones, reducing the risk of osteoporosis. Having a variety of roles like teacher, mother or writer gives people satisfaction, whilst having paid employment improves your standard of living and the range of leisure interests etc that you can pursue.

The problem is that when pain is intense it is almost impossible to do anything at all. The experience of pain is unique for each one of us and it is impossible for anyone else to know just exactly what the pain feels like for you. It is therefore very upsetting to be told to ignore the pain and get on with things. Having rheumatoid arthritis means you have to continually balance what you do in your life.

Medication will reduce pain and inflammation to some degree but what is the payoff in side effects? It is also true that some drugs mask pain so that the joint is not rested when it needs to be. If there is a flare-up then rest is essential but what if you cannot rest because there are children to look after or a job to go to? The problem is that it is also important to carry on these roles if you can but the work and rest balance needs to be right. Life becomes meaningless if you cannot do some of the things that you want to do, but it is also important to protect your joints and your energy levels. We all need to find the balance that is right for ourselves. If possible we need to find a way to reduce the pain and stiffness that we experience.

There is no complete answer to the problem of pain but understanding it better may give insight into coping with it more successfully. The next section of this chapter outlines why we have pain and then looks briefly at pain reduction techniques. Many of these will be examined in more detail later in the book.

UNDERSTANDING PAIN

The word pain is derived from the word poena, which means punishment. It is a very unpleasant sensory experience, which occurs because there either is, has been or is likely to be tissue damage. It is difficult to be more specific because the experience is so different for everyone. Clinically pain is often divided into two groups:

• chronic; and
• acute.

Acute pain is relatively short lived. It is usually a warning signal and recedes when the action is taken to stop it. We have sensory receptors in our body tissues for heat, pressure or touch and these will respond if the stimulus is strong enough to cause tissue damage. Pain will then be felt, action will be taken and the pain will subside. For instance this happens when you burn yourself on a pan.

On the other hand chronic pain is persistent and carries on long after healing is complete. It is unlikely that it can be serving any useful biological function during this time.

There is no clear dividing line between active and chronic pain and in rheumatoid arthritis both may occur.

In rheumatoid arthritis acute pain usually occurs because during inflammation the joint capsule or ligament is stretched. Pain could also be due to pressure on blood vessels or compression of a nerve or because there is tension in muscles. The pain may be a warning of internal tissue damage to the cartilage and lining of the joints. In some people with rheumatoid arthritis the pain seems to persist as chronic pain when a flare-up has ended and there should be remission. This may be because, when the tissues were damaged, nerves could have been damaged too and the central nervous system may have been affected. Sensation in the area of damage might have become heightened, producing persistent chronic pain

THE PAIN GATE

Understanding pain mechanisms can help in the reduction of pain. The mechanism for pain is a complex process involving mental and physical components and is called the pain gate theory. This theory proposes that there is a neural mechanism that acts like a ‘gate’. It is a highly specialised system of cells that receive input from large and small diameter nerve fibres. These fibres come from the sense receptors of the body and from the brain. The opening and closing of the gate depends on the relative activity of the large diameter and small diameter fibres. We have transmission cells called T cells projecting into the brain and it is these that start the production of pain. Activity of the large diameter cells tends to stop the transmission of the T cells and therefore no pain is felt. Activity in the small diameter fibres tends to open the gate and pain occurs. This research has led to more understanding of pain and how it is possible to stimulate the large diameter fibres and close the pain gate. Mechanical or electrical stimulation can stimulate these fibres and so close the pain gate.

THE TENS MACHINE

The principle of electrical stimulation is used in the Transcutaneous Electrical Nerve Stimulation device (TENS) and other similar devices that are now on sale. These machines seem to achieve some degree of relief in about 60 per cent of sufferers although the success with chronic pain is only about 30 per cent. McQuay et al3 summarised their findings about pain relief in 1997. They stated that the TENS machine was beneficial when used in large doses and that its effectiveness increased over time.

Physiotherapy departments usually have TENS machines or similar devices and some retailers offer demonstrations and approval periods with money back guarantees. The TENS unit is a small box with adhesive pads that go onto your skin. It is always necessary to try equipment before purchase because everyone is an individual and what works for one person will not necessarily work for another.

MASSAGE

Massage produces mechanical stimulation and can therefore also be effective at reducing pain. Many types of massage are available including aromatherapy. This is a type of massage using oils that can be chosen specifically to be beneficial for arthritis. Aromatherapy is wonderfully relaxing, easing tension particularly around the neck area and generally easing pain. I have not found any research specifically indicating the use of massage or aromatherapy for rheumatoid arthritis however there is research to show that relaxation is beneficial in reducing pain. I have tried aromatherapy a few times and I have found that it does reduce tension and that it allows my joints to move more easily. The problem is that it is not available on the National Health Service (NHS) and is therefore expensive to have regularly.

You can buy massage equipment from many retail outfits and this can be used with or without oils. You can massage yourself or get a partner to do it for you. Alternatively there are massage courses available and you can attend with a friend or a partner to learn basic massage techniques.

I also find that heat is useful to reduce discomfort. You can buy a hot water bottle or nowadays you can buy wheat bags that you can put into a microwave to heat up. These are very useful as you do not have to fill them like bottles and you can drape them around your neck or put them over or under your feet or in the curve of your back. They are not very expensive and are well worth bearing in mind for your Christmas or birthday list.

ACUPUNCTURE

Acupuncture is also used for pain relief because it also produces an intense sensory input. Needles are inserted in specific points of the body to clear energy channels. The needles may close the pain gate or it may be that they stimulate the production of endorphins, the body’s natural painkillers. It is difficult to know how effective acupuncture is for rheumatoid arthritis One study in the rheumatology journal in 1999 concluded that acupuncture was not useful for rheumatoid arthritis patients.4 Another study by Berman et al in the USA also concluded that the usefulness of acupuncture for rheumatoid arthritis has not been demonstrated on a large scale. It appears to be more useful for the pain of osteoarthritis. It may be worth a try and sometimes it is possible for a GP to make a referral for acupuncture. At present there is a move for complementary treatments and therapies to be funded by the NHS so it may soon be possible to try massage in this way as well.

DISTRACTION

Another way to reduce the impact of pain is to use the idea of distraction. This means that you need to choose an activity that is totally absorbing and enjoyable. This may then distract you from feeling the pain, at least temporarily, or it may reduce the impact of the pain. In my own case I use music: listening, performing, dancing or going to concerts. Music has always been very important to me but it is only recently that I came across a book exploring the healing effects of music, called The Mozart Effect.6

This book illustrates the benefits of music of all types and shows how different types of music can be appropriate for different conditions and for strengthening the mind. This is how music can be useful for reducing pain. Certainly music can help us to express emotions and it can change our mood. Depending on the type of music we can feel full of energy, sad, relaxed or happy. Music has always seemed to be beneficial for me but all of us must find an appropriate activity for ourselves. Obviously it must be something that can be realistically managed. It could be a film or an absorbing book or it could be attending a football match or bird watching or socialising. It really does not matter what it is. As long as you enjoy it you will find that it can reduce the sensation of pain for a time.

NATURAL PAIN-KILLERS

If the activity you choose is a physical activity then this will also have the added bonus of stimulating endorphins, the natural pain-killers that our own body produces. This type of pain-control mechanism can be seen in cases where people have suffered a serious injury but are somehow able to get to safety and do not feel pain until later. Producing these endorphins is nature’s way of ensuring the best chance of survival.

Laughter also seems to work by promoting good circulation and/or by stimulating the release of endorphins. It is therefore very important to have fun, do things that you enjoy and find something to make you laugh. Recent research has shown the benefits of a good laugh. In his book The Healing Journey7 Matthew Manning tells us:

‘patients who seem to experience the lowest levels of pain are invariably those who can laugh, sometimes at themselves, in times of difficulty or danger.’

NUTRITION

It may be possible to alter the balance of the chemicals in your body by exploring nutritional changes and supplements. There are many books and articles claiming that certain diets and supplements can cure arthritis pain. However, reading books on food guidelines can be confusing and research is inconclusive. There is no general cure for rheumatoid arthritis that can work for everyone, although some people do seem to derive benefits from avoiding certain foods. This may be because some people have a food allergy that aggravates the rheumatoid arthritis symptoms.

Some studies,8 have demonstrated that a vegetarian or vegan diet is beneficial eg (2002) Mcdougall et al. They concluded that:

patients with moderate to severe rheumatoid arthritis who switch to a low fat vegan diet can experience significant reductions in rheumatoid arthritis symptoms.

A controlled trial by Kjeldsen-Kragh et al9 also advocated a vegetarian diet. They reported that rheumatoid arthritis patients could improve by fasting and then changing to a vegetarian diet.

A study by Palmblad et al10 in 1991 claimed that:

total fasting induces within a few days a substantial reduction of joint swelling, morning stiffness and other arthritic symptoms.

Buchanan et al11 claim that symptoms are probably reduced in this case because after fasting there are less of the chemicals needed to start the inflammation process off. Therefore the reason for the reduction of symptoms could be this and not because of a food allergy. Obviously fasting cannot be used as pain relief but only as a way of cleansing the body prior to a diet change. The Arthritis Research Campaign12 concludes that there is some scientific evidence that the right diet may help symptoms in some people. Whatever diet you try ensure that you do not leave out essential nutrients.

It is probably worthwhile exploring nutrition to find out which foods can help to make the best of the situation. Nutritional consultants can do an assessment and then give guidelines as to which foods to avoid and which to eat more of. The guidelines are based on a holistic look at the health problems encountered on an individual basis. The treatment is therefore specific to each person. Alternatively you could do an elimination diet, which involves living on water and herbal teas for two days and then introducing different food types gradually. Keep a food diary to record food and pain levels. It may then be possible to see if any foods affect you adversely. It could work for you. It didn’t work for me, thankfully. I love my food too much!

It is definitely a good idea not to put on too much weight if possible because it puts a further strain on the joints and makes pain and damage more likely. A healthy diet which includes all essential vitamins and minerals, particularly calcium, is very important. This is because it is important to keep the bones and joints as strong as possible. Osteoporosis tends to be more common in rheumatoid arthritis patients, probably because of reduced exercise or because of steroid treatments.

RELAXATION

Using relaxation techniques, yoga or hydrotherapy can reduce the tension in our bodies. Some techniques are more useful than others. The best type of relaxation for people with rheumatoid arthritis involves the use of visualisation, rather than the sort that involves tightening and releasing muscles. It is also important to remember to notice when your muscles are tensed up, so that you learn to stay as relaxed as possible, because tension creates pain. A study by Affleck et al13 in 1992, carried out on 75 rheumatoid arthritis patients, showed that patients who used relaxation daily had less pain during the duration of the study. Relaxation and stress management will be discussed in more detail in a later chapter.

POSTURE

It is also important that a correct posture is adopted for sitting, standing and walking. Often we are not aware of the inappropriate ways we do things until it is pointed out. I often used to stand in a way that put all my weight onto the same foot. Being aware of what to look for means that you become more observant of the positions that you adopt. Bad posture can also increase pain. There will be further discussion of posture in a later chapter and guidelines on correct posture for reducing pain.

Changing positions

Continually changing the position of your joints is also extremely benefical. It is really necessary to change positions frequently, about every 20 minutes. I find that if I go to the cinema then I have to really struggle to get out of the seat at the end of the film, and also that my shoulders are very stiff and rigid and I cannot put my coat on. However if I am in the house, carrying out light domestic tasks, my joints feel much less stiff.

My work environment is also beneficial for me, as in the office all the resources and forms are a long way away so I have to continually get up and down. I also have to go on home visits that involve driving and walking as well as sitting down, so this means that I regularly change my position and the joints that I am using.

THE PAIN DIARY

Another idea that may be useful for reducing pain is keeping a pain diary. Many variables can be recorded, for example food, activity, the weather and stress. These should be recorded one at a time to see if a pattern emerges. The pain should be scored according to intensity from 1–5. Make a recording for morning, afternoon, evening and night. The diary should be kept for about a month for each type of variable. It can be helpful to keep a diary even if a pattern does not emerge, because it often shows that the pain or stiffness is not always present to the same degree. If a pattern does emerge then the day can be planned more efficiently.

I always start my day very slowly and take a long time to get up. I have a cup of tea in bed and exercise my joints in bed by gently moving and stretching my shoulders, arms, fingers, legs and toes. I then get up slowly and gradually I loosen up. I drive to work and I am still fairly stiff when I arrive, mostly because of having to sit in the car in traffic. I wander around at work and have a coffee. Three hours after I have woken up I feel a bit more human!

SPLINTING

If pain is very intense in the hands then splints can be beneficial and an Occupational Therapy department will give out working splints. These reduce pain by ensuring that the painful joint does not move or get knocked when you are doing activities. Many patients find these splints useful. A study in the Journal of Rheumatology14 in 1998 examined the effects of the wrist orthosis (splint) on work performance and pain. Pain was found to be significantly less after work if the splint was worn. Nocturnal resting splints can also be provided by OT departments. These splints are worn at night both to reduce pain and to keep the fingers of the hand in a more extended position to try to prevent deformities. A study in the American Journal of Occupational Therapy concluded that resting hand splints are effective for pain relief. However I have been unable to find research establishing that resting splints reduce deformities in the hands, but this could be because the research has not been done.

MEDICATION

Of course the main way that people control pain is by using medication. Some medication is given to slow down the rate of disease progression and some is given for relief of inflammation and pain control. The medication available for rheumatoid arthritis will be discussed in more detail in the next chapter. Generally it is important that you as a patient ensure that you understand what a particular medication does and what the likely side effects are. It is essential that all medication is reviewed regularly and that you take blood tests where these are necessary. It is also important to make sure that appointment times with consultants are used as fully as possible. Always think out any questions that you want answered and jot them down so that you do not forget.

There are many pros and cons to taking regular medication and it is always a balancing act. Each individual must decide with the help of his or her consultant rheumatologist. It is important that you make an informed choice. The Arthritis Research Campaign website www.arc.org.uk keeps a lot of useful information and this can enable you to make a decision.

SURGERY

If pain is persistent, and it is preventing the joint from moving properly and reducing your ability to walk or care for yourself, then surgery may sometimes be suggested. This could be an operation to:

• fuse the joint; or
• a joint replacement.

If the joint is fused it will stop the pain but obviously the joint movement will be lost. A replacement may be suggested but this will depend on the damage done, the pain and how much it affects daily activities. It will also depend on your age and lifestyle because some replacements may not last more than ten or 15 years and will have to be updated regularly. This is particularly the case with replacement finger joints that are not as yet very hardwearing. At the same time it is also true that joint replacements are being improved all the time and some replacement joints can last more than 20 years. You will need to weigh up the pros and cons and discuss the operation with your consultant. It is not advisable to rush into surgery but it could be very beneficial.

Another problem is that the surgery may not be performed at the time when it is most beneficial because of waiting times to see the consultant and to have the operation. This happened to me when I needed a tendon operation. Anyone waiting for surgery can find that tendons have shortened and then the joints cannot work properly even when the surgery has been performed. Also waiting often puts the strain onto other joints and then they may well become damaged and painful too. If it is an option it is a good idea to pay privately, at least for the consultation. Also a second opinion may be a good idea.

A PERSONAL SCENARIO

I have had rheumatoid arthritis for 30 years and luckily for me the only time I had extensive and continuous pain was in the early years before diagnosis. At this time my hands and feet were painful most of the time, and at night the pain was intense and I found it difficult to sleep. Since then I have experienced a lot of stiffness and discomfort but the only time I have had intense pain is when someone has tried to force a joint into a position that has become almost impossible due to joint damage. For instance, when my children were small they moved quickly and unexpectedly, and knocked my hands or sat on my feet before I could jump out of the way! At other times I might knock into things or I might get a recoil reaction from pushing or pulling something. This pain is intense but it is short-lived and is therefore bearable. A quick scream makes you feel better!

I am not sure whether I control pain by my lifestyle by exercising, practising joint protection techniques, keeping active, relaxing or by taking medication, or whether it is my chemical and biological make-up that helps by producing lots of endorphins. It may well be all of these things. I only know that I do not seem to suffer the pain that many people do. I consequently seem to be a bit of an enigma to many of my doctors and therapists. In the rest of this book I will discuss these issues in more depth in the hope that I can help others to have a good quality of life and freedom from pain.