Persistent orofacial pain - Newcastle Hospitals NHS Foundation Trust

This page provides you with information about persistent orofacial pain (POFP) and aims to answer any questions that you may have.

If you need any further information, please do not hesitate to ask the dental and or nursing staff caring for you.

What is POFP?

Orofacial pain is pain in or around the mouth and face. This page is about pain that is not caused by toothache (short-term pain) and that has lasted beyond the time of normal healing (three months),
known as long-term or ‘persistent’ orofacial pain.

Persistent orofacial pain may be caused by one or more of a number of conditions or the cause may be unknown.

Often this kind of pain involves changes in the way that muscles, joints (for example temporomandibular disorders), nerves (for example trigeminal neuralgia, ‘phantom’ tooth pain, nerve injuries) or blood vessels function in and around the head, face and jaw.

Orofacial pain can be more intense than pain that is experienced elsewhere in the body and is often very distressing.

Depending on the cause of your pain your dentist/doctor may put in place a management plan which could include the use of some of the following: splint, medication or exercises. It is important that you take an active role in discussing management options with your dentist.

This is the first step towards self-management. Good self-management is key to a good outcome. It is the foundation which supports all additional treatment that dentists, doctors, physiotherapists, clinical psychologists or specialists may be able to provide.

What causes pain?

Pain is complex. Although we often think of pain as a signal of physical damage or injury in reality two people who experience exactly the same injury will not feel the same amount of pain.

If you have persistent pain you probably do not experience it in exactly the same way from day to day or even over the course of a day.

Rather than thinking about pain as a mark of damage it is more helpful and accurate to think of it as an alarm. It focuses attention towards something which may be a problem. Like other alarms it can sometimes be triggered when it is not necessary. For example it is common to experience pain in the feet when getting into a hot or warm bath in the winter, even though this does not cause damage.

In this case, short-term pain does not signal damage but reminds us to check that the water is not too hot. Persistent pain is even less likely than short-term pain to be an accurate or reliable indicator of ongoing damage to the body.

Any change in the body can cause warning messages (alarms) to be sent to the brain in the form of simple electrical signals via the nerves.

The brain will then process and interpret these messages in the light of other information held in its memory to work out how much of a threat there is. The ‘pain alarm’ will ring louder in circumstances when the brain or body is also experiencing more stress, anxiety, low mood, muscle tension or feelings of being unsupported or misunderstood.

On the other hand, feeling supported, relaxed, interested and engaged in life will help to quieten the pain alarm. A good example of how this can work is that people playing competitive sport often
don’t notice injuries or their level of severity until after the event ends, even though similar injuries caused in different circumstances would usually be very painful.

Options for pain management

Treatment decisions for persistent pain can be challenging and there is often no straightforward way to decide the best course of action.

Surgery is rarely appropriate as the risk of making things worse can outweigh potential benefit (except in very specific circumstances which your healthcare provider would discuss with you).

Medication (often called ‘medical or pharmacological treatment’) can help in the short term but there is little evidence that it is beneficial over longer periods of time. Medications also carry a risk of side effects and negative events.

You should be aware that sometimes the best course of action may be to avoid medical and or surgical treatment altogether. You should discuss this alongside all other possible pain management options with your healthcare team. Self-management, however, will be important whether or not you also choose to undertake medical treatment for your pain and is described below.

Self-management of persistent pain

The aim of self-management is to understand how a range of strategies may be helpful in persistent pain and to be able to use these effectively. Using these strategies may not make much immediate difference but there is good evidence that they can help with pain management over a longer period of time.

The methods mentioned below will be most helpful if used on a regular basis regardless of your level and type/source of pain. They are less likely to be helpful if they are only used when your pain is particularly intense or distressing. These techniques are unlikely to reduce your pain, although if used regularly they may help you to keep it under control.

Understand your pain

Understanding more about long term pain can make it less threatening and also reduce the chance that you feel misunderstood by your healthcare providers. It is often the first step towards also understanding that there are things you can do that will make a difference.

For some people, reading and talking about the information provided by this leaflet may be enough. It may also be important to talk more with your healthcare providers about your pain. For a more detailed understanding of long term pain and how it can work check out the resources listed at the end of this page.

Increase helpful behaviours to reduce the impact of your pain

Stress management

Constant pain is stressful and life also understandably becomes more stressful when pain is an issue. Stress does not cause persistent pain, but ongoing stress can feed into the intensity of pain. Good
stress management habits can help to prevent and reverse this pain and stress cycle.

Living a healthy lifestyle, getting outside, eating well and taking regular exercise will all help with stress management. Regular relaxation, yoga, mindfulness or similar classes are also helpful.

Practical tip

Practice this breathing exercise a few times a day to help reduce stress and interrupt the stress-pain cycle. Focus your attention first on the sensations your body produces as it breathes. Then focus in detail on the feeling of your feet, or any part of your body which is in contact with the ground.

Stay aware of this while also noticing each breath as it enters and leaves the body. Notice how the chest and shoulders rise on a breath in and drop on a breath out.
On a breath out, imagine that the breath is easing and soothing away tension. Count to 7 as you breathe in, pause, and then count to 11 as you breathe out.
After four breaths allow your breathing to return to normal.

Stress is normal

A regular routine of looking after yourself and relaxed breathing (‘antistress’ behaviours see practical tip box above) can stop it from becoming a problem. However stress management only helps as long as you are doing it. It is very common for people to stop anti-stress behaviours when things get difficult.

The most important part of stress management is to notice when you stop doing the things that were helping you. A weekly alert on your phone or in your diary can help you to remember to check and to
plan to re-introduce healthy habits into your routine if you have stopped.

It is also helpful to regularly check in with how you feel and what you are doing. Ask yourself what advice you would give to a friend in the same circumstances, then consider following your own advice.

Focus on what’s important

One of the most common and unhelpful responses to pain is to put your life on hold waiting for it to ease. We are meant to pay attention to pain and to focus on how to ease it. However this is only helpful for pain in the early stages which is very much related to damage.

Once pain has lasted for more than a few months it is important to look for ways of doing the things that used to feel important or enjoyable. Doing so will help to strengthen the lifestyle factors that can quieten the pain alarm over time.

If some of the things that used to be important to you are not possible with your current pain, it is worth giving some thought to alternatives. In order to do this it can help to think about why certain activities were important to you (see example below).

Example

Jo used to enjoy going out for Sunday lunch with her family, but found that this would often make her orofacial pain worse and she would worry about spoiling the meal for everyone else. She thought about what she valued about Sunday lunch. For Jo it was about having a chance to connect with family, relax and spend some quality time together. She discussed this with her family, and agreed instead to watch a film together, followed by coffee.

This new arrangement was easier for her to manage, while still allowing Jo to connect and relax with her family.

It is also important to plan activities or routines that may be helpful when the pain is particularly intense or upsetting. At times engaging in a familiar activity will be more helpful than trying to lie down and rest with nothing to do other than think about your pain.

Stay connected with friends and family

Long term orofacial pain will make it more challenging to stay connected with friends and family. This can be because of the pain itself, limitations on the things you can do and also because pain often has an impact on mood. Low mood often causes feelings of isolation and disconnection from friends and family that might be related more to mood than reality.

It is important to plan ways of staying in touch with friends and family. They may not understand your pain or know how to help so it is important to find ways of letting them know what you need. To start with it may help to look through this leaflet together. Talking about what you plan to do to help you manage your pain and how you would like them to be involved is very important if possible.

It can be challenging to know how to connect with friends and family when pain and low mood are a problem. You may find it helpful to see a clinical psychologist who can help you with different ideas and perspectives about this.

Target and decrease unhelpful behaviours that may increase the impact of your pain

Holding muscle tension

Often, pain can cause the muscles around a painful area to tense up. Over time this can lead to additional pain coming from the tense muscles. It can be helpful to frequently tune in to the area around your pain and check for any tension. You can soothe this tension with heat (e.g. a moist warm flannel), simple stretching and relaxed breathing.

Using reminders, such as sticky dots that you put in places where you often look, or computer/phone alerts can help you to remember to check if you are holding tension. It will be easier to notice tension if you are regularly using some of the stress management techniques described earlier.

Believing what you think

It is normal at times for people to feel anxious, sad, angry, scared or guilty. Living with long term orofacial pain is difficult and will tend to increase these normal emotions. These feelings will often be accompanied by thoughts that support them.

I can’t stand it

I’m letting everyone down

Nobody cares

It is important to understand that thoughts like this are not statements of truth. They are opinions, not facts. The thoughts we experience are linked to the emotions we feel, and if we believe them they will feed these feelings even more.

In fact, often a cycle can develop in which thoughts, feelings, behaviours and the physical impact of these can all feed into each other. The result can be intense feelings and troublesome thoughts that make pain harder to deal with, affect the choices you can make and are difficult to handle in their own right.

The important thing to remember is that these thoughts and feelings are triggered automatically and are not necessarily true (even though they feel true at the time). Some people find it helpful to recognise and challenge thoughts that cause problems for them with logical answers. Others prefer to wait and let them pass, knowing that they are no more than opinions triggered by certain circumstances and moods.

More information about dealing with thoughts and feelings can be found in the resource list. You may also be interested in asking for a referral to a clinical psychologist or psychological wellbeing practitioner for further help in dealing with thoughts and feelings that impact how you are able to manage your pain.

Pain and related physical symptoms
Thoughts (eg I can’t bear this, why will nobody help?)
Feelings (eg anxious, frustrated, distressed).
Behaviours (eg snap at people, withdraw)

Developing a plan for self-management

Each pain is different and each person who experiences pain is also different. The ideas in this leaflet can provide a good starting point for how to respond helpfully and avoid common pitfalls that can end up making things worse. However not every idea will work for every person or in every situation.

Remember that although stress, anxious or low mood, reduction in activity levels and pessimistic or self-critical thinking styles did not cause your facial pain, they can still feed into a cycle that tends to make pain worse over time. Working to improve and manage each one of these on a regular basis is one of the most effective ways of managing pain over time. In order for this to be helpful it needs to become a regular part of your lifestyle. Self-management strategies will not help much if you only use them when the pain is already at its worst.

It is very challenging to develop and maintain the kind of long term changes that will be beneficial for your pain. It is likely to take time to find a self-management plan that will work for you. use the template below to plan and evaluate your ideas for changes that may work for you.

Plan for self-management

Self-management strategy	Importance for me	Needs in this area?	Planned response for this week / month
Understanding about my pain
Increase helpful behaviours:
Managing stress
Planning to do what’s important
Staying connected to people
Reduce unhelpful habits:
Holding tension
Putting life on hold
Believing what I think

Weekly management plan (one or two changes to try)

Review of management plan (what went well, what barriers were there, what do I want to focus on next?

For further information

Contact details

If you have any problems or require further information, please telephone 0191 233 6161 and ask the switchboard to transfer you to the department you were seen in (between 9am – 5pm).

At all other times, please contact your own dentist. PALS (Patient Advice and Liaison Service) for help, advice and information about NHS services. You can contact them on freephone 0800 032 02 02, e-mail [email protected] or text to 01670 511 098.