Chapter eleven
THE PAIN DRAIN
|
|
Chapter elevenTHE PAIN DRAIN |
|
How our bodies 'feel' pain, and 'block' pain
What's meant by the pain threshold and pain tolerance levels?
Mind and body: What is the 'placebo effect'?
What is 'referred pain'?
Developing your own pain-control programme
The chronic pain of inflammatory arthritis is very different from acute pain, as Mary*, aged 30, with RA, knew only too well:
"I want to talk about pain. I'm in constant pain day in, day out, sometimes better, sometimes worse, but always there. If it were just the occasional pain one could talk about it openly but, understandably, no one wants to hear a constant moan about aches and pains, so the tendency is to say nothing lest you say too much, until a barrier develops and eventually you find you can no longer talk about it to anyone. Even when someone specifically asks how you are you never admit to pain. 'I'm fine' means 'I'm not too bad', 'I'm not too bad' means 'I'm not very good' and 'It comes and it goes, means it's come — with a vengeance. In the end you become isolated with your pain, locked in a world which no others are allowed to enter. It becomes very lonely. Pain is central to my whole existence yet I can't talk about it. So there is a large chunk of my life that I'm unable to share with others. There's a large chunk of me that I'm unable to share with others."
Fourteen or so years later Mary* re-read what she'd written:
"I was astonished to re-read my own comments and realise how bad things were, or could be, at the time. Perhaps you could add a note to your book, reminding folk that it does get better. Nowadays there's nowhere near as much actual pain unless I've been stupidly overdoing it which, being inherently stupid, I often choose to do."
Let's look back, for a moment, to experiences of chronic pain when it's at its worst. What happens and how do we start dealing with it? It can drain you not just physically, but psychologically and emotionally too.
"Acute pain may be a life saver but chronic pain… turns strong individuals into weak, nervous folk. It turns the affable into the irritable; it makes cowards of the brave… The sufferer from persistent or recurrent pain cannot sleep or rest; his hopes will be built up repeatedly and then quickly dashed; he will often find it difficult to explain to others the extent of his pain and suffering. However bizarre they may seem, he will explore all potential possibilities for relief and understanding, support and sympathy. He will struggle to understand what purpose his pain can serve. He will be depressed and discouraged no matter how often he is given hope and encouragement." (Dr Vernon Coleman, Natural Pain Control, Century Arrow, 1986)
A bleak picture. But wait. The darkest hour is just before the dawn. The enemy is Arthur Itis. His most vicious weapon is chronic pain. But we can fight back. Even if we can't eliminate him completely (not just yet, anyway) we can weaken his hold over us. As in any battle, sometimes he'll have the upper hand despite our most valiant efforts. But the tide will turn, and we and our weapons can always be ready and waiting to take the advantage.
A good General finds out as much as possible about the enemy before planning his strategy and marching into battle. I think we too can fight better if we first understand what pain is and how 'pain-control' works. The first step is to understand more about how pain can be both a physical and a psychological experience.
The cause of pain in inflammatory arthritis is physical. It's a warning signal that your joints are having a bad time; something's not as it should be. If you touch a hot stove, or hit your thumb with a hammer, you can respond to the pain warning signal, and stop the cause of the pain ('acute' pain) at once. Easy. Not so easy with RA and its cousins. The pain signals just go on and on and on, long after you've got the message and want it to shut up ('chronic' pain). But you can't remove the cause (yet), so instead, to quieten the signals you've got to use pain-control (drugs or non-drug methods or a mixture of the two).
Most people who've never suffered chronic pain can't begin to understand what it can do to you. It's especially hard for them to understand how something apparently so invisible and so physical in its cause can also have such a huge psychological, emotional and social impact. Someone who does understand is Connie Peck. She's Senior Lecturer in the Department of Psychology at La Trobe University in Australia, and a member of the International Association for the Study of Pain. In Controlling Chronic Pain (Harper-Collins Publishers) she wrote:
"When pain becomes a chronic condition, a predictable set of problems are likely to befall those who suffer from it. Some of these problems can, in turn, further aggravate the pain, eventually creating a vicious downward spiral of compounding pain and complex new sets of problems. Such complications can take many forms. The most common involves trying one unsuccessful treatment after another; losing faith in doctors; taking too many drugs or too much alcohol; worrying about drug dependency; giving up activities from which pleasure and mastery were previously achieved; pain and illness becoming the focus in one's conversation and thoughts; depression; marital discord; feelings of anger, guilt and anxiety; and finally low self-esteem. All of these add up to what will be called the Chronic Pain Trap."
"Simply understanding the process as an identifiable syndrome is often comforting to the chronic pain sufferer; since the knowledge helps him to combat the feeling that he is alone with his problem and that no one else understands what is happening to him. Families, doctors and friends sometimes express doubts about the reality of a chronic pain sufferer's experience, implying that they are wondering if, perhaps, the pain is really exaggerated or imagined. Such misunderstanding of the problem only serves to aggravate the condition of the pain sufferer, to make him feel angry with others and eventually to cause him to have negative thoughts about himself."
Whew! Please don't get too depressed at all this. — Plenty of tips on how to get out of the Chronic Pain Trap come later.
Talking about chronic pain as a psychological experience is tricky, and all too easily misinterpreted to mean 'it's all in the mind, so it doesn't exist', which is definitely not so. The pain of inflammatory arthritis is definitely not 'all in the mind'. It's very real.
Some theories about the cause of some types of inflammatory arthritis suggest emotional stress might be one of many possible 'trigger factors' but since there's no proof, and since that theory can so easily be misunderstood, let's stick here to what we do know for sure.
We need to distinguish between cause and symptoms, because the mind most definitely has a large part to play in how we react to the symptoms. A person's psychological response and the physical pain experienced are closely interlinked. In recent years much has been learnt about how pain works and how it can best be controlled, even if it can't be cured. Scientists have been trying to understand, for instance, how a large percentage of even seriously injured accident victims don't feel immediate pain: the experience of the heroic policeman in the Kings Cross Underground fire in November 1987, for instance. His hands were critically and horrifically burnt, yet he said he wasn't aware of any pain at the time. He was too busy thinking of getting people out, and thinking of his family. Incredible. No painkillers, yet he wasn't aware of the pain. How? Why? How could the mind shut out pain like that? Is it a skill people could learn to turn on at will?
The mind and how we feel can certainly make pain worse. Chronic pain can lead to anxiety and misery and fear of yet more pain. And the more we worry about pain the worse it seems to get:
"The way we respond to pain is influenced by our mood… lf you're feeling unhappy and you hit your thumb then the pain will stay with you all day long. Indeed, the pain may well exacerbate your depression, with the inevitable result that you become locked in a vicious circle. Your pain will make your depression worse; your depression will make you more susceptible to pain, and as your pain threshold is lowered so your depression will be deepened." (Dr Vernon Coleman, Natural Pain Control, Century Arrow, 1986)
Resentment of pain, the 'why-did-it-have-to-happen-to-me?' angry response can aggravate it too, whereas faith in the Almighty, doctor, physio, or anyone else may help pain tolerance. Fortunately, though mind and body often seem to conspire together in a vicious circle, they can also work together to break and reverse the circle, as healthcare professionals and we old-handers have long recognised. One rheumatologist summed it up nicely:
"An occupied mind in a relaxed and happy person needs fewer pain pills to get through the day than an unhappy person with no mental distractions, even though both have the same amount of painful arthritis." (ARC magazine, autumn 1983)
Easier said than done, I hear you say. True! But how? Easy enough to prescribe painkiller drugs, and they do have their part to play, but in moderation when possible. Can non-drug painkillers really work too? How might they work? What are they? Before we start the pain-control and repair work let's try to understand recent researches into the workings of pain. No point in trying to repair the car if we don't understand how it works in the first place.
A network of nerve fibres in the body busily transmits messages (eg heat, cold, touch) to and from the brain, via the spinal cord. Nerve endings are highly sensitive to pain and soon alert the brain that all is not well in an arthriticky joint.
You might have come across the 'gate control theory' of pain, a theory put forward by Ronald Melzack and Patrick Wall in the 1960s. Basically, this suggests that only a certain volume of messages can be processed by the nervous system at a time, and a 'gate' in the spinal cord controls the flow.
Some nerve fibres are thick, some thin. Some convey messages quickly, some slowly. Some fibres (called C fibres and A-delta fibres) carry pain messages. Other fibres (A-beta) carry non-painful messages. Messages move along the A-beta fibres very quickly, and they're thicker than C and A-delta fibres. The theory suggests that one way pain control works is by increasing the A-beta (non-painful) messages so much that they block pain messages travelling along the other fibres.
Apparently C fibres (painful messages) can regrow if damaged, but A fibres can't, and also tend to decrease in number as you get older. Maybe there's a tiny note of encouragement there for us younger people with arthritis? Youth and arthritis are nasty bedfellows, but at least we should have a good network of A-beta fibres (non-painful messages) to help 'block' pain.
There are basically two ways of blocking pain. First, at the site of the pain, you can interfere with the release of chemicals which trigger the nerve endings to dispatch a pain message to the brain. These chemicals are called kinins and prostaglandins. The prostaglandins also increase the flow of blood to the site of tissue damage, inflaming the site and making it red and swollen, and they also make the pain receptors on the nerve endings even more sensitive, wickedly increasing the sensation of pain. Painkillers like aspirin (a 'non-narcotic' painkiller) and the anti-inflammatory drugs ('NSAIDs') are 'anti-prostaglandins' which work to stop pain messages ever starting their journey to the brain, by interfering with the manufacture of prostaglandins.
You can also block pain messages at the site of the pain by increasing the flow of alternative messages to the brain along the non-painful A-beta fibres. For instance, if you bang your thigh, the natural reaction is to rub it better. The 'rub message' helps block out, or reduce, the volume of pain messages getting to the brain. Similarly, RA aches and pains in a thigh can seem less if you cuddle a warm comforting hot-water bottle.
The second basic way of blocking pain is to let the pain messages travel along the nerve network, but to stop the brain recognising them. Drugs that work this way are the 'narcotic' analgesics like codeine and morphine. Something like morphine seems to work by mimicking chemicals called 'endorphins'. Research has shown that the body can actually produce its own endorphins (inner pain-killing chemicals), in the brain and spinal cord. They can switch off the body's pain alarm system by fitting into special receptors on nerve cells.
Doctors from Newcastle General Hospital investigated why healthy men in the annual Tyneside half-marathon fun run went on until they collapsed in confusion without first feeling intolerable pain. In their report in the British Medical Journal (April 1987) the doctors reported that all the runners had more than three times as much 'natural painkiller' in their blood as before, but those who collapsed had on average four times as much as those who didn't. Endorphins suppressed the pain, produced 'feelings of well-being', and meant that the runners pushed themselves much further than if they'd felt pain.
Hearty exercise is one thing we YPAs can't really indulge in to stop the pain (though maybe sometimes swimming works? And laughter's been called 'stationary jogging'!). However, endorphins also seem to be produced if you're busy doing something really important to you, more important than 'pain'. An occupied mind helps stop the brain recognising pain messages. If you busy yourself with an enjoyable chat with friends the pain seems less than when you sit alone, feeling sorry for yourself, letting the pain messages rush around the body unhindered. Try to flood your mind with pain-blocking activity so there's little or no room left for pain and misery messages. Tips to help follow in later chapters. Dr Sampson Lipton wrote:
"What is allowed to rise into your mind depends on what you are doing at the time, how much you are concentrating on something else and how important this information is to you. If you have severe chronic pain, you can learn to use this modulation to your advantage. By immersing yourself in work, exciting games, books and films or by just watching an interesting programme on television, you can distract your conscious mind from recognising pain. One famous actress was able to make the pain of arthritis vanish while absorbed in performing her role on stage, and dentists have found that their patients bear the pain of drilling much better if they are listening to music they enjoy." (Conquering Pain, Macdonald Optima, 1984)
Other non-drug methods of controlling pain messages include methods used and taught by physios, such as massage, heat treatment, ice treatment; or simple anti-stress techniques like those described in chapter 14 (like meditation, relaxation methods, laughter or talking therapy); or the use of counter-irritants (liniments rubbed into the skin, for instance). Some people find something like acupuncture or the use of a TENS machine, as described in chapter 10, helps. Other chapters suggest ways of cutting down on pain-causing activity or stress, and ways of 'being positive' and distracting your mind from recognising pain.
How someone feels pain is influenced by his or her pain threshold and pain tolerance level. The pain threshold is the point at which you first feel pain. Above this level you'll still be able to stand increasing pain, until your pain tolerance level is reached, when it becomes simply too much to bear.
Just as some people's eyesight is better than others, some people are able to stand more pain than others. Social conditioning, learned behaviour, and personality all play their part. If a child making a fuss about a pain finds he 's rewarded with attention and affection which he wouldn't otherwise get, then his pain tolerance level may decrease to ensure more of this welcome attention. If pain brings 'rewards' why bother to fight it?
That's why people around the child, or around someone in chronic pain should make a special point of showing attention and affection at other times too, as rewards for things other than the expression of pain. That doesn't mean ignoring somebody in pain: support and comfort are needed, especially when it's severe, but they should try to give even more encouragement to efforts to fight the pain and efforts to take an interest in other things. In Conquering Pain Dr Lipton explains: "The realisation of how your behaviour may be affecting how much you are feeling pain can go a long way towards making you more able to deal with it."
We've looked at some of the ways the mind can influence the body in its response to pain. Isn't it amazing too how the very act of doing something to help yourself can make you feel good? And how the belief that someone or something is going to do you good sometimes seems to have the same effect?
This fascinating influence of mind on body is seen when new drugs are tested on patients who've agreed to take part in 'clinical trials'. Half the patients are given 'placebos' (dummy drugs), while the others are given the real drug to be tested. Incredibly, on average, about a third of patients respond to placebos, though the results vary widely. In a trial conducted in 1984 on patients suffering from Crohn's disease (which causes irritation of the gut and bowel) 25 to 40% of the patients who were on placebo treatment improved enough to be considered to have had a remission.
However, though placebos seem sometimes to help in relieving symptoms, there's still no evidence to suggest that they can cure a disease. Researchers still have a long long way to go before understanding all the whys and wherefores.
The placebo effect may be one reason why sometimes strange remedies seem to work for some people with a rheumatic disorder. Another reason is that natural remissions are unpredictable anyway, and sometimes just happen to coincide with a particular treatment. However, provided a placebo does no harm to you or to your pocket, and provided you've got your doctor's agreement, why scorn something which makes the most of the magical power of the mind?
Some of us with hip trouble have been surprised to experience pain in the knee, and find it hard to understand how the doctor's so confident the trouble hasn't actually spread to the knee! What we're feeling is 'referred pain' — pain that doesn't actually arise where we seem to feel it. It's all to do with the arrangement of nerve fibres.
Sciatica is another type of referred pain. The pain actually arises in a prolapsed disc in the back, but is referred down the leg, down the back of the thigh and part of the calf. It's called 'sciatica' from the name of the nerve involved.
I hope all this helps you understand how pain 'works' and, more important, understand how drug and non-drug methods of pain-control can work. I hope this helps you as you develop your personal 'Outwit Arthritis Kit', your self-care programme worked out to meet your own very individual needs.
Remember, you're not a failure if the pain's still there, and if there still seem more downs than ups. Sometimes the arthritis just refuses to let you even begin to take control of your life. In those bleak times don't hesitate to let the doctor help you take the strain with whatever treatment helps, and don't feel somehow you're to blame for the pain. You're not. Just hang on in there till the better times arrive.
Ideas in this book will help you develop your self-care programme. Your personality, your family and friends and your healthcare team will all play their part too in helping (or hindering!) you along the way. Remember it may be a slow process, and a lot of it done subconsciously.
Some sources of information