The other key discussion point at the recent Royal Society of Medicine conference on chronic pain was why some people go on to develop chronic pain after an acute painful episode. Typically, these are people who have an acute attack of back pain, a whiplash injury after a car accident or pain after a surgical operation. In most situations the acute pain settles after a while and the individual recovers completely but, in some cases, maybe in up to 20% of people, the pain does not settle, instead it becomes a chronic, long term, everyday experience. Why do some people go on to develop long term chronic pain? What are the factors that determine this and can we use those factors to predict the individuals at risk? These were some of the questions which preoccupied the speakers at the conference.
Now, the conference was not specifically concerned with sickle cell disease, but these questions have obvious implications for sickle cell, where acute episodes of pain are so common. The standard medical model of sickle cell is that, from time to time, the blockage of blood vessels by sickled red cells results in a sudden attack of bone pain, which is self-limiting and recovers over a period of days, to be followed by a pain free period of variable length until the next attack. But, it is quite clear that some patients have continuous, daily pain, which is difficult to explain using this model. Is it that these particular individuals experience chronic pain, much like the patients mentioned above? If so, do the same risks factors operate and does this present an opportunity to identify individuals at risk of chronic pain, with the possibility of intervening to prevent this? There are no definite answers to these questions but it is interesting to look at the risk factors for chronic pain, which were identified at the conference, and think about whether they may apply in the context of sickle cell as well.
The conference speakers identified “the big seven” – seven different psychological characteristics which predict which patients are most at risk of going onto to develop a chronic pain syndrome.
The most important factor in predicting the risk of developing chronic pain was a tendency to catastrophising. We have met this concept before in talking about pain severity, when I described it as “losing psychological control of the pain”. Individuals who catastrophise are characterised by three features. They tend to think a lot about their pain, “I can’t stop thinking about how much it hurts”; they tend to magnify or amplify their pain, “The pain is terrible and I am afraid that there is something seriously the matter”; and they feel helpless, “There is nothing I can do to help the pain”.
These are common reactions to pain and we can all recognise ourselves in these statements but, it seems to me that this is a particularly frequent and strong tendency in patients with sickle cell. I suspect this is because the attacks of pain in sickle cell occur repeatedly and unpredictably and in some way overwhelm patients’ psychological resources. Of course, it doesn’t help that sometimes sickle cell pain is associated with a serious underlying complication and that insufficient education about sickle cell and poor medical management may leave patients believing that nothing can be done for their pain. Dealing with this tendency to catastrophes and replacing it with a more measured response to pain is probably a key factor in limiting the consequences of acute pain in sickle cell.
The second factor in the “big seven” is illness belief. By which is meant what you think and understand about the cause of your pain. Having a realistic understanding of the cause of the pain and understanding how this will gradually improve and resolve makes it less likely that the acute pain will transform into a chronic pain syndrome. Having a set of negative illness beliefs predicts strongly for progressive deterioration and the development of chronic pain.
In terms of sickle cell, it is the difference between being told as a child that you are condemned to a life of unremitting pain for which little can be done because “it is in your genes” and being given a more reasonable explanation. Such as, from time to time you will experience pain in the bones due to temporary blood vessel obstruction and a reduction in oxygen supply, but the pain is self limiting and will get better after a few days, in the meantime it can be managed by taking regular pain killing medication. The latter explanation, whilst being honest about the possibility of pain, keeps it in perspective. The key therefore to managing illness beliefs is education, which is why so much emphasis is put on making sure that people with sickle cell, their families and friends have a proper understanding about what sickle cell is and that any myths or misunderstandings are identified and resolved before they can adversely affect patients ability to manage their illness.
The third factor is self efficacy. This really relates to how good patients are at managing their own pain and illness. How many resources they themselves have to cope with their situation. Those patients who have a lot of coping abilities tend to manage their pain more successfully, whereas those with limited coping abilities manage the pain poorly and there is a much greater likelihood that it will become chronic and long term.
Again, this is obviously important in sickle cell pain and relates to the “helpless” part of the catastrophising character – “there is nothing I can do to help the pain”. Education is key here as well, making sure that all patients have the necessary resources and knowledge to manage painful episodes successfully. This relates to simple things like having enough pain killers and knowing how to take them, but also to more complicated issues like trying to equip patients with the psychological strength to help them withstand the repeated painful attacks.
The fourth factor is fear avoidance behaviour. Individuals who show fear avoidance behaviour are so frightened by the pain they experience that they avoid doing anything that might provoke the pain. They stay indoors, inactive and immobile in an attempt to limit the pain, but all this does is to lead directly to a state of chronic pain, disability and ultimately over dependence on others.
In sickle cell the difficulty is that this sort of avoidance behaviour may be encouraged by well meaning doctors and nurses. For example, patients are told to keep warm at all times and to avoid going out in the cold and wet. We encourage patients to use pain avoidance behaviour but risk therefore inducing a sense of fear and dread and all the negative effects that leads to . I think the solution to this problem is one of balance. Of course, it is important to limit exposure to conditions or circumstances which might provoke a crisis but not at the expense of becoming terrified of what might happen if you do indeed go out. And, if you want to do something which might provoke a crisis, you should go ahead, on the basis of understanding the risks and taking whatever other precautions are possible to minimise these, but not letting fear of the disease dominate and control you.
The next factor is iatrogenic. This means that something has been caused directly by the intervention of doctors or nurses. For example, a doctor may say to a patient with lower back pain due to arthritis that “the pain is unlikely ever to go completely and they are very likely to have other bad attacks in the future”. To a susceptible individual, this may be enough to confirm the hopelessness of the situation and they will be much more likely to go on to experience chronic pain on a long term, daily basis as a result. Doctors should always ensure that during any conversations with patients who are in pain they are accurate, honest, balanced and, where possible, optimistic about the management and outcome of the pain. If they are, then patients will be better equipped to deal with the pain and the pain will be much less likely to progress.
We have already discussed some examples under illness beliefs about how important accurate information is for patients with sickle cell disease. But honesty is also vital. It is no good making unrealistic claims for treatments or drugs, which can never be fulfilled. Hydroxycarbamide is a successful drug in sickle cell disease which reduces the frequency of painful crises, but if the doctor claims that it abolishes all pain, then the patient will ultimately lose faith in the treatment and the doctor, because their claims will inevitably be shown to be false. The same applies to making exaggerated claims for the effectiveness of pain killers; strong pain killers will lessen the pain experience but will never stop the pain. If doctors claim otherwise then loss of faith and despair inevitably follow. Expectations must always be realistic.
The sixth factor is perceived injustice. In other words if an individual thinks that their pain or illness is unfair and unjust then they are more likely to progress to a chronic pain state. This refers particularly to situations such as where someone is involved in a car accident, which is no fault of their own. The other driver is blamed for causing the accident, their injury and the subsequent pain. If that driver is not seen to be punished then the patient may harbour a sense of grievance and injustice and will be more likely to go on to develop a chronic pain syndrome. This is also linked to litigation, which is the seventh and final factor in the “big seven”. Patients who get involved with the law in pursuing justice are much more likely to become chronic pain sufferers.
Litigation is not a big issue in sickle cell but I suspect that perceived injustice may be much more important. “Why me?” or “It’s just not fair!” are commonly heard statements reflecting a sense of injustice. The trouble is that there is no obvious person to blame, as there may be after a car accident, nowhere that the sense of injustice and anger can be directed against. Perhaps this is why some patients with sickle cell appear to be so angry. Without any obvious target, their anger is indiscriminate, directed at all and sundry, hospital staff, friends and family. Not only does this sort of reaction put them at increased risk of chronic pain but it risks alienating the very people who could help them. A toxic mixture if ever there was one.
In these two blogs I have reviewed the factors which increase sensitivity to pain and those that predict which patients are at risk of developing chronic pain, and have discussed how they might be relevant in the sickle cell context. For all of us, not just those with sickle cell, it is worth I think reflecting for a moment on our own response to pain and how these emotional and behavioural factors can affect how we view pain, how we tolerate it, how we manage it and ultimately the place we give pain in our lives. For those with sickle cell, who live with pain or the consequences of pain all the time, these issues are particularly relevant. If you think these issues are making it more difficult to manage your illness then do something about it – talk to your psychologist or doctor and make sure that you get the help you need.