Questions You May Have - Manage Your Pain: Practical and Positive Ways of Adapting to Chronic Pain - Michael K. Nicholas, Allan Molloy, Lee Beeston, Lois Tonkin

Manage Your Pain: Practical and Positive Ways of Adapting to Chronic Pain - Michael K. Nicholas, Allan Molloy, Lee Beeston, Lois Tonkin (2012)

Chapter 2. Questions You May Have

Everyone starting this programme will have a number of questions about it. This section attempts to answer some of your likely questions. Of course, you may want to know more - or you will have other questions. If so, we suggest either reading more of the handbook or discussing your questions with your doctor or other health care providers.

1. Is the pain all in my mind?

You may have had the unfortunate experience of being told that your pain is all in your mind. At times, even you may have wondered about this.

Let us reassure you on this point. All pain is real even though no one can see it. Pain is something you feel that is as real as hunger or excitement. It is true that some people when feeling very depressed or suffering bereavement describe themselves as being in pain. But the pain this book is directed at is due to physical changes in the body, whether the changes be due to an injury, a disease or the effects of ageing.

In many cases it may not be clear why your pain has lasted so long - but that doesn’t mean it is all in your mind - it is almost certainly caused by something that has gone wrong in your body. Unfortunately, there may be no cure for it at present. But what we do know is that the longer your pain goes on the more it can affect you, your daily life and your family or friends.

If there is no cure for your pain at present, a realistic alternative can be for you to try to improve the ways in which you cope with it. This does not mean that you have caused the pain in the first place.

A similar example of this is diabetes. No one would ever suggest that diabetes is “in the mind”. But there is no cure for it at present and how much diabetes affects the person who has it depends largely on how well they manage it. For example, if a person with diabetes is able to maintain a suitable diet, get regular exercise and check their blood sugars daily they will maintain their health. On the other hand, if they don’t do these things they may get quite sick and even hasten their death. There is little role for their doctor in this except to advise and monitor their progress. The person with chronic pain is in a similar position - although in their case poor pain management may not kill them. However, poor pain management can cause you to suffer more than you need to.

2. Will the methods described in this book stop my pain?

The pain won’t go away because you cope with it better, but it should trouble you less. As you will already know, coping with pain isn’t easy and there aren’t any quick fixes, but if you follow the approach used in this book you should find it gets easier.

3. Is the solution simply “mind over matter”?

It’s not clear what this really means, but there is unlikely to be one simple solution to all the problems caused by chronic pain. How you feel in yourself affects how you cope with your pain, but that’s not mind over matter. Some people might think that all you need to overcome pain is determination or “will power”. However, all the will power in the world won’t help if you don’t know what to do with it. It would be nice if you could just will your pain away, but as you know, it isn’t possible. The methods described in this book are intended to help you find effective ways of dealing with your pain and the problems it causes you. Determination will help but you need to listen, to think and to try things out as well.

4. If my pain gets worse after exercising aren’t I causing myself harm?

This is a very understandable question and will be covered fully in the physiotherapy sections of the book. But briefly, providing you do the exercises in the ways shown you should not harm yourself. In particular, you should always work within your tolerance level and try not to overdo things - even when you feel you can do more. All increases in exercise level should be carried out in a planned and steady way. If you are concerned about this issue we would encourage you to discuss it with a physiotherapist or your doctor.

In general, for people with chronic pain any extra pain after exercise will mostly be due to the effects of long-term inactivity. As your muscles and joints get fitter and stronger the extra pain and stiffness will gradually lessen. The same sort of thing happens to all of us when we try new exercises and activities after a long period of inactivity.

5. Should I give up all hope of a cure?

No. It is quite possible that either your pain will gradually lessen over time or eventually someone will find a way of treating the underlying cause and curing it. However, it is one thing to hope for an eventual ‘cure’ while you try to live with the pain as best you can. It is quite another thing to want to go from doctor to doctor, often repeating the same treatments and investigations, and to refuse to accept expert opinion that there is no cure possible at present.

You will find it easier to cope with your pain when you are satisfied that your pain has been investigated and treated as thoroughly and competently as possible. You will need to use your own judgement and good sense in reaching this conclusion. You will find there is a great deal you can do to help yourself by learning and practicing the approach taken in this book. At the very least, you will achieve a better quality of life.

6. If I stop the pain killers won’t the pain get worse?

This is a common worry, but most people find little difference in pain overall. At the same time, most people also find they feel better in a number of ways. After you’ve been taking pain killers for a long period, they gradually become less helpful and you may well have tried to increase the dose or strength of your tablets. At the same time, you may have noticed a number of unwanted side-effects, such as, tiredness, stomach and bowel problems, difficulties in concentrating, and even additional aches and pains. In the end, the evidence is that pain killers offer only limited help to many people with chronic non-cancer pain and may actually worsen their situation.

The approach recommended in this book is to gradually reduce your pain killers and, at the same time, to develop other ways of coping with the pain and any withdrawal effects.

However, it is very important that you make no changes in your use of medication until you have discussed it with your doctor. We strongly advise you not to stop any drugs your doctor has prescribed for you without discussing it with him or her first. We would also recommend that if you do decide to cut back on your medication for pain that you do under your doctor’s guidance.

7. I’ve tried everything already (without much success) so why should this programme work any better?

Of course, there are no guarantees that this programme will work any better. In the end, you can only try it and see what happens. You do have to bear in mind that this approach is not a cure, but rather a way of living with pain. It will only work if you keep practising the methods outlined in the book. In many ways, it is a bit like cleaning your teeth. If you don’t clean your teeth at all, they will suffer. But cleaning them doesn’t guarantee you will never have any decay, only less than you would have had if you never cleaned them.

Where you feel there are similarities between things you have tried before and the approaches described here, you may find it worthwhile thinking about why your past attempts were not successful. For example, you may well have had the right idea or intention but the problem may have been to do with the way you applied it. This is the sort of thing you could find helpful to discuss with your doctor. Perhaps it should also be pointed out that this programme is based on what has been learned from people with chronic pain - in this country and elsewhere - over a long period. In other words, there is a great deal of evidence that it can help - providing you put it into practice and keep doing it.

8. It sounds good in theory, but will it work for me?

One thing we can assure you, is that success with this programme does not depend on the severity of your pain, the site of your pain, the original cause of your pain, or how long you have had it.

We don’t expect you to believe in this approach before you have tried it. However, we have found that most of the people who have gone through the programme have got something out of it and many have made major changes because of it. How much someone gets out of it depends on a number of things, such as:

- how much you put into it (if you don’t try the techniques and methods covered in the programme you won’t get much out of them - thinking and talking about your pain won’t be enough);

- how ready you are for it (if you don’t accept that your doctors have done all that is possible, you may not be ready);

- other worries or pressures (stresses at home or financial worries may make it harder for you to focus on the programme).

9. Is this the right treatment for me?

Many of the people who attend our programme feel that they are different from other patients - either because their pain is in a different place or the cause is different. As a result, they feel that while the programme is the right approach for some people, it is not the right one for them.

To some extent, this could suggest they haven’t come to terms with the chronic nature of their pain. Whatever the differences between people with chronic pain, there are also many similarities. For example, most of the people attending our programme would agree that their pain has disrupted their lives in many ways. Whatever the cause or site of their pain, all of the people coming to this programme have a pain problem that is not curable at present. All have to learn to live with their persisting pain.

The results achieved so far by patients attending the programme (and other similar programmes) show that all people with chronic pain can benefit from the programme, regardless of their differences.

10. Am I too old (or young) for this approach?

This concern has much in common with some of those already covered. But if you have persisting pain and you would like to manage it better than you are at present then it doesn’t matter how old you are. If you are older you might not be able to do as much as some other people, but that would apply whether you had pain or not. It is also our experience that there are more concerns about using medication for pain in both the young and the elderly.

Everyone using this book should try to apply the methods described to themselves as much as possible.

11. Is the ADAPT approach suitable for people with pain due to cancer?

Yes. Providing your cancer is being addressed medically as much as possible (usually with some combination of medications, radiation or surgery), it can still be helpful for you to play a role in managing your pain. The methods outlined in the book can be useful regardless of the cause of pain. In the case of pain due to cancer, the ADAPT methods should be seen as an adjunct to the normal medical treatments for cancer and associated pain. The ADAPT methods can still help to improve your quality of life and may help you to reduce your reliance on analgesics (pain killers) as the only means of controlling your pain.

12. What about people with pain due to HIV/AIDS?

Yes. The answer would be the same as for those with pain due to cancer. The cause of pain is not so relevant when it comes to self-management principles. In fact, most of the principles outlined in this book are useful for the management of all chronic illnesses. They are not intended as cures, but rather to help the person live as well as possible with the illness.

13. What about people with spinal cord injury pain?

As more than half of people with spinal cord injuries report chronic pain associated with their injuries pain self-management is a major challenge on top of all the other adjustments they have to make. For several years now we, and several of our colleagues, have been testing these methods with people who have spinal cord injury pain and were referred by their doctors to our clinic. We have found that these methods can help this group, but as with everyone else, you have to do them regularly for several weeks before you will see benefits. Also, like everyone with chronic pain, you will need to keep practising these strategies as long as your pain persists. Naturally, there are some differences between those with spinal cord injuries and other people with chronic pain that are important to keep in mind when applying the methods described in this book.

The most obvious difference is that many of the exercises described here are not possible for people with spinal cord injuries. However, the principles of trying to keep as active as possible, doing whatever exercises are possible, using pacing, remain important.

The more psychological strategies, however, are just as applicable regardless of whether or not you have a spinal cord injury. The chapters on dealing with unhelpful thoughts, emotional distress, setting goals, developing an activity upgrading plan, sleep management, and using strategies like relaxation and focusing on the pain are especially important.