Essential Knowledge About Pain
“Why are people telling me different things?”
Problem 1: Confusing Words
Medical terminology can be a minefield. Technical terms can be difficult to understand. There may not be agreement amongst health care practitioners on what terms mean.
Here are 3 terms; pain sensitivity, neuropathic pain and central sensitisation. These terms do have very different technical definitions. However, they can all lead to the similar kinds of issues for a person with pain. So it might not matter too much to you which of these terms is used to describe your problem. However, if you see 3 people and they each give you a different one of these labels, and you don’t know they kind of mean the same thing, you could become very confused. It might seem like you are getting 3 very different opinions, when in reality the 3 health care practitioners are really saying the same thing.
This is just one example were words can cause confusion.
Problem 2: Information Overload
Pain problems are often complicated. Only around 10% of the time is there a specific diagnosis for people with pain problems. When there is not a specific diagnosis, a list of contributing factors, that is factors that contribute to ongoing pain, might be important. However, the list of these factors can rapidly become long. Understanding all the contributing factors, and often how the relate to one another and to your pain, can take time.
Knowledge is powerful in managing pain. However, often health care practitioners impart a lot of information in a small period of time. Sometimes the information at first may be difficult to relate to, or accept, as you try to understand your pain problem.
Problem 3: The Negative Effect Some Words Have
What do you think when you hear the word ‘degeneration’ used to describe a part of your body, say the spine? It is well known that terms in medical reports like ‘wear and tear’ or ‘degeneration’ can contribute to negative feeling and worry for a person with pain. It is also known that simple explanations added to medical reports can reduce this worry. This is the particularly the case for diagnostic scans, where clarifying statements added to reports can be very helpful. It has been shown that a statement like ‘degeneration such as this is seen in the majority of people, even those without pain’ can really help. Unfortunately, statements like these in scan reports remain rare.
Further, health care practitioners often do not have/take the time to fully explain scan findings in relation to your problem. Scans are often used to rule out the ‘really bad stuff’. The health care practitioner might move onto the next priority, without realising you may not understand fully what your scan report has said.
Also, some health care practitioners like to make sweeping statements about your future based on a scan or test result. This is generally not possible and definitely not helpful. Scan results need to be interpreted in relation to how you actually present with all your signs and symptoms. Then the relevance of the scans at that time can be ascertained. There is no evidence that because a scan shows something today, that there will be an inevitable consequence in the future. For example, ‘You’re going to need a knee replacement in 5 years’. Scans cannot predict the future.
Problem 4: The ‘Speciality’ Effect
Many people with pain need help from health care practitioners with certain skills. Maybe you need to see an orthopaedic surgeon. Maybe you need a physiotherapist. Maybe you need a pain psychologist. This is necessary, because it is too much for one person to be able to do everything.
But this also means that these people can seem to overly focused on one part of your problem and not seeing the whole picture. A holistic, whole person approach is often needed for people with pain. The majority of health care practitioners understand this, and view people in this manner. However, when it comes to communicating how they can help you, they may only comment on the specific detail related to their specialty/area of practice. That does not mean they are not taking a holistic approach, it is just that they have not necessarily communicated this. This can also be related to time constraints, or on occasions, for medicolegal reasons.
This can lead to confusion about the decision they have made in relation to your care. A classic example might be the person who has something on a diagnostic scan that could be managed surgically, but the opinion is not for surgery. This is because having surgery for pain is not as simple as ‘Found A – Surgery B = Fixed’. Many pain problems get better with time and the risks of having surgery are not warranted. Or, surgery may be indicated, but the person is not suitable for surgery because they have other risk factors for poor outcome with surgery. It is well known that risk factors for poor outcome from surgery include obesity, smoking or poor mental health. So, an opinion might be made on this holistic view of your status, but communication around this might not be so clear, adding to confusion for you.
What Can I Do?
There is good evidence that education and understanding is helpful for pain, and coping with pain. If you don’t understand something, you need to ask questions. Some things that might help
- Write down your questions.
- Use the internet, there are great resources out there.
- Having an appointment with a health care practitioner just to ask questions is okay. If you don’t understand something, keep asking until you do.
- Understand that people might say the same thing in different words. Try to work out who is ‘on the same page’ or who isn’t. If there are truly differing opinions, ask questions.
- Build a healthcare team with shared understanding to help you. Consistent messages are powerful.
- If you are unsure, a second opinion is okay. All health care practitioners should be familiar with the second opinion process and happy for you to engage in this.
A Final Point
Management of pain is not an exact science. Your body is not like a car, where you can find a part that isn’t working and simply replace it to get the car running again. Managing pain is not always black and white; the grey zone is large. And this can lead to differences in opinion that can be difficult to understand and navigate. Just understanding this may help reduce frustration when trying to reconcile the different opinions you might get.
Summary: I don’t know who to believe
Knowledge is powerful for managing pain disorders. Building a team around you who help your understanding of your problem is helpful.
Evidence Informed Information Compiled By Dr Darren Beales, PhD and Dr Tim Mitchell, PhD