A principal source of advice, support and information on psoriasis and psoriatic arthritis
A registered charity no: 1118192
A registered charity no: 1118192
Some opening comments
It is not easy to summarise a 27 hour multi disciplinary course into a short article. Nevertheless, I will do my best in the following paragraphs to give you an overview of some of the key principals of managing pain. Although not an academic article, all the principals described here are based on sound outcome research which indicates that effectively implementing pain management principals can make a major impact on the quality of life for people suffering chronic pain. The title of this article has a question mark at the end because I do not believe the psychological issues of chronic pain can be separated from the physical sensations and the behavioural activity that are linked to pain.
Some underlying principals.
Pain is real and is a mind and body phenomenon. People without chronic pain may doubt that the sufferers pain is real and sometimes people with chronic pain begin to wonder themselves whether their pain is real. In part this arises from a common confusion over the difference between chronic pain and acute pain. A useful way of approaching the whole issue of the reality of pain, which is a very complex philosophical question, is to assume that when people have pain it is both a bodily phenomenon and affects their "mind".
Chronic pain is very different from acute pain. We all learn about acute pain as children, we fall on gravel and hurt our knee, it bleeds and as we recover physically the pain gets less. This is our model of our word pain. Chronic pain is very different. Firstly, it goes on for a much longer period, often a three month cut-off is used. Second, the pain can continue irrespective of the damage that is causing the pain. Unlike acute pain there is not a neat relationship between the amount of damage and the level of pain, - rather pain fluctuates across days, weeks and sometimes over months and years. Chronic pain can continue for people long after the original damage has disappeared. An example of this is people who continue to have pain in, say, part of their foot after they have had a below the knee amputation. This principal is central because it brings home the idea that it may be useful to manage the pain in addition to or instead of addressing the medically underlying cause of the pain.
Management not cure. This principal follows from the above points. Pain management means pain management, - it is not an attempt to cure pain. Instead it is a way of trying to control and regulate the experience of pain and minimise some of the secondary effects that arise from it.
Pain fluctuates with thoughts, feelings and biological factors. This principal indicates that pain is a complex phenomenon determined by many different factors which interact in a variety of ways.
Relationships and society attitudes are relevant. Because our thoughts and feelings play a role in our experience of pain it follows that the relationships we are in can also influence and be influenced by the experience of chronic pain. We may also react in a variety of ways to the attitudes of society to people with a disability, with a pain problem and so on.
Chronic pain syndrome is maintained by a series of vicious circles. These vicious circles affect physical health, mood, activity and our self-concept and core beliefs about ourselves, the future and the world. More of this later.
It is useful to concentrate on what keeps chronic pain syndrome going. This involves identifying and modifying the "maintenance factors". The emphasis is very different from delving into the past using the kind of psychological interpretation typical in specialist forms of psychotherapy. Nevertheless, it is also important to acknowledge that the beliefs and experiences which influence the personality may be important in the way we respond to our pain.
Everyone is an individual but common patterns can be found. This principal is self-evident as anyone who has discussed their chronic pain with other people in pain will know.
Some of the key vicious circles
I am just going to summarise here some of the various vicious circles which can turn a pain problem into a pain "syndrome". In practice these vicious circles overlap and interact and it is difficult to separate them. It is useful, however to take them one by one because they highlight areas where changing your behaviour or the way you approach your life may be useful.
The role of thoughts and beliefs
Up until now the factors considered have been either physical or behavioural. However "thoughts", "our minds", "the way we see the world" make a huge impact on everything that has been described so far. To take one simple example, changes in mood lead to changes in our thoughts and changes in thoughts then affect our mood. A common example of this is that when people are low in mood they tend to have negative automatic thoughts about themselves, the world and the future. These often quickly pass through one's mind, occasionally doing so in the form of images. Typically people may have thoughts like: "I am useless", (a negative thought about the self), "nobody cares", (a negative thought about the world), or "there's no point", (a negative thought about the future). Not surprisingly, these negative thoughts lead to reduction in mood and the more low you are in mood the more of these thoughts you get. The whole process is compounded by the role of memory since when people are low in mood they spontaneously recall more aversive memories. Typically the cycle of mood and thoughts then impacts on activity, relationships and choices.
Over time day-to-day thoughts can lead to changes in our long term beliefs about ourselves and the world and others
Unhelpful beliefs may become consolidated and reinforced and these then underpin the availability of even more aversive thoughts on a day to day basis. One example of this would be the very powerful thought of feeling helpless and unable to influence ones life "nothing I do can make a difference". Over repeated months and years the "habit" of thinking "what's the point" and "nothing helps" may become entrenched with the overriding belief that one is helpless to change one's situation. The kinds of thoughts and the affects they have on our mood vary. Some key typical patterns of thoughts of people with chronic pain are as follows:
Hopeless thoughts, eg "there is no point" leads to depressed mood and potentially to despair.
Self-attack thoughts, including the idea of not being socially acceptable, lead to the emotion of shame.
"Should" thoughts often lead to making unnecessary choices or judgements about ones own behaviour or others and thoughts about anticipated adversity lead to increased anxiety and avoidance situations.
Some interventions which help
Up until now this series of mutely reinforcing factors may leave readers somewhat helpless and depressed! How can one break though these patterns? Well here are some suggestions. As you will see they are by no means all psychological in the narrow sense of the word nor are they "high tec". They are, however, very hard to implement in practice.
Exercise/activity. This is extremely important but be sensible and follow the advice of physiotherapists and doctors. Generally though staying active over the years and decades will probably be the single most important approach to reducing your long term pain and disability.
Pacing activity. Pacing goes with the above. The rules of pacing are very simple but putting it into practice can be extremely difficult. The major issue here is that people on a "good day" tend to do too much with the result that they suffer on the following day, and are more inactive. Not surprisingly, on the next good day they again tend to do too much. It is extremely difficult to reduce activity when one feels able to do more. However, reducing the activity on days when one if feeling good means that the overall activity level may gradually increase.
There are more complex ways of implementing pacing which involves timing ones "activity level tolerances" for key activities like standing, walking and sitting. To do this effectively one needs to take the average of three or four timings across the day or across a couple of days. This average tolerance level time then needs to be divided by half and the result of that is the "activity tolerance level" (this is also sometimes called a "baseline"). This final halved average time should then be the guide for managing all your activities of daily life. It is extremely frustrating to do this, but in the long term can lead to greater activity level and a reduction in cycling between periods of over activity and periods of under activity.
Planning of activity
Planning is vastly underrated. By planning ahead one can find ways of breaking down over demanding activities or getting around situations which may seem insurmountable.
Because of reduced activity levels people tend to drop some of the fun/rewarding activities of life and end up with an overbalance of demands which are not very rewarding. It is very useful to prioritise, "namely do I really need to do this?" "do I need to do all of it?", "can I get someone else to do it?" etc, etc.
Relaxation techniques are very useful for reducing muscle tension which arises from chronic pain and for resting the body after exercise. There is a range on the market and it is important to find a relaxation technique that suits you. It is important to say that relaxation is a skill which takes time to learn and it is worth sticking at relaxation for a least two weeks, daily., before deciding whether or not it is helpful. In order to maintain relaxation techniques it is very good to work them in as a daily routine when they soon seem to get squeezed out with the demands of busy lives.
Understanding chronic pain helps sufferers to feel less out of control and helpless.
Self-monitoring of thoughts, mood and pain
Draw up a chart, monitor whatever is the problem, and the moment you start recording you will start to change what you are doing and become more aware of it. This is true for behaviours from eating chocolate bars, smoking cigarettes, doing too much activity or using your creams regularly. This is a low tech intervention which is extremely powerful and the only reason why people do not it is because it is quite hard to be disciplined to keep it up. However it does bring results. It also shows patterns and gives ideas for changing other aspects of your daily life.
Set goals for leisure and pleasure
This notion goes with the idea of prioritising or if you have listed. If you have dropped leisure activities try and think of ways of getting them back, or think of new ones which you have never done before. Avoid saying "yes but.": it is very easy to talk oneself out of solving a problem because of the obstacles in the way. To get round such obstacles it is useful to plan with someone else who is supportive. If you have not got any ideas get a list of adult education classes and then you might find something you can do on a regular basis.
Test out your thoughts
If you know what the negative thoughts are that tend to affect your mood and behaviour then you can start trying to test out whether they are accurate. For example, if you feel that there is no point in doing something why not test out and try it; if you feel you wouldn't achieve something why not test out and see if you can; if you feel something would be too painful to endure you may want to test that out. Of course, plan these "behavioural experiments" carefully in line with other medical advice. After you have completed them spend some time on what you may have learnt: even if they have not gone right it may be that there is some lesson there which can be useful for next time you try and implement a change.
Convert shame to self-support
This is easier said than done: shame is very powerful and people with chronic low back pain feel ashamed of their disability. Skin symptoms can exacerbate these feelings. These feelings may not be absolutely conscious but more linked to an underlying sense of low self-esteem, anxiety about "taking ones place in the world" and so on. Often linked to these emotions and sensations is a degree of self-criticism. Try and replace self-criticism with reassuring and encouraging self-talk. It really can make a difference. Think to yourself what would you say to somebody else who was feeling as awkward, embarrassed, critical of themselves; how would you encourage them, how would you encourage a child who felt like that? These are the ways you need to talk to yourself if you want to start to liberate yourself from shame and embarrassment.
Anything that is creative whether it is growing plants, making ceramics, doing cross-stitch - you name it - this is likely to be beneficial. These activities not only help people to feel a sense of achievement, but also to be absorbed in something other than their own physical ill health. Some people get the same experience simply from reading a good novel or listening to music. The idea is to find something that absorbes you emotionally, possibly spiritually and "takes you out of yourself" for a period.
This is, as I said, a bit of a lightening summary. I hope that there are at least some points here that may be useful to you. If you want to pursue some of the suggestions around your thoughts and feelings I recommend the book "Mind Over Mood" by Padesky and Greenberg which is a self-help book on what is known as "cognitive therapy". A book called "Manage your Mind" by Butler and Hope is also useful and covers a range of other aspects of mental health. Some of the books on managing chronic pain listed below may also be useful, though do remember that most of these apply more to chronic back pain than to arthritic conditions. The major adjustment you may need to make is to really emphasise the importance of gradual changes in fitness and activity levels.
A final comment, all of the above should be put on hold if you are in a flair up of your condition in which case you need to slow right down, rest for a brief period, possibly increase medication use and take advise from professionals.
The Pain Relief Handbook
Dr Chris Wells & Graham Nown
Vermillion, ISBN 0-09-181371-9
Living With Your Pain
Annabel Broome & Helen Jellicoe
The BPS, ISBN 0-901715-77-8
Sex and Back Pain
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