Pain Service - Chronic Facial Pain

Introduction

Following your assessment today in the multidisciplinary facial pain clinic you will have been told that you have chronic or persistent facial pain. These words or terms mean that you have pain in your face which has lasted for more than 6 months, that has not been helped by appropriate treatment and there is no other diagnosis to explain your symptoms. Sometimes it is referred to as ‘atypical facial pain’.

The aim of this leaflet is to explain in a bit more detail why chronic facial pain occurs and to answer some of the questions you might have. It may also be useful for you to share this leaflet with someone close to you. You may wish to share it with your employer or work colleagues.

Chronic facial pain can be confusing and frustrating to live with, particularly as it is something that cannot be seen from the outside. Chronic facial pain can sometimes impact on the ability to speak and communicate which can be distressing for those in pain and their family and friends.

This leaflet is primarily for people with chronic (persistent) facial pain, without a specific diagnosis of trigeminal neuralgia. It is also useful for people who have had a diagnosis of trigeminal neuralgia where treatments have been unhelpful, or not possible. 

How is chronic facial pain different to trigeminal neuralgia?

Trigeminal neuralgia is a very specific type of facial pain arising from the trigeminal nerve. This nerve receives sensory information from the face and sends it to the brain and neuralgia typically arises when it is being compressed for some reason (usually by a blood vessel at the base of the brain). Various descriptions are given to the character of this pain, which includes stabbing, electric shock-like pain or burning. It is referred to as being lancinating, which means that the pains come in very short-lived bursts. The pain can affect either side, but never travels from one side to the other. It does not cause numbness or weakness to the face.

If your symptoms are different to those described above, then your pain is less likely to be trigeminal neuralgia, and more likely to be chronic facial pain.

If you have the specific diagnosis of trigeminal neuralgia, there may be surgical or radiation treatments available. Medication may also be effective. If there are treatment options, they will have been discussed with you already. You may find it helpful to read our other leaflet on Trigeminal Neuralgia leaflet.

Chronic facial pain

Chronic facial pain can affect one or both sides of the face, and can radiate to the neck, shoulders, and head. You may also experience other symptoms, such as numbness, pins and needles, migraine, tearing of the eye, tinnitus (ringing in the ears) or a runny nose. Chronic pain sometimes starts for no apparent reason. On other occasions people can pinpoint a specific event, for example a painful dental procedure or an ear infection.

Chronic facial pain can sometimes be part of a wider chronic pain problem, such as fibromyalgia or chronic widespread pain.
Chronic facial pain is not a dangerous or progressive condition and is due to hypersensitivity of the pain nervous system. The next few sections explain this hypersensitivity in a bit more detail.

Explaining chronic facial pain

Most of us grow up understanding that pain will go away. So how can we make sense of pain that doesn’t go away – pain that becomes persistent?

Why do we feel pain? What is its job or function?

Normally the job of pain is to tell the body about damage which can be from an injury or a disease and to help make decisions about what to do. However, in chronic pain, our most up to-date research tells us that something different is going on, the pain is no longer serving a useful function; it is a real sensation but not a useful one. There is a lot of research to show that in chronic pain there are changes in the way that the whole pain system is working.

These changes affect:

• How the pain messages are carried around the body
• How the brain makes sense of the messages
• What happens in the pain messaging system

In the brain there are separate departments that:

• Work to focus our attention on the area that is painful
• Identify the location of pain and what it feels like (e.g. hot, shooting, stabbing)
• Influences our movement and activity
• Guides decision-making and planning about how we manage it
• Create an emotional response (e.g. anxiety, anger, depression)

All these areas working together make up what we experience as pain. They happen without the person being aware of the process.

There are important differences between acute pain and chronic pain

In acute pain (new injury/damage), pain is very important. It makes us rest and protect the injured area so that things have a chance to heal, or so that we can seek treatment. However, even then, it is possible to have an increase in pain without further injury. Think of a new, purple, swollen bruise. What does it feel like if someone gently prods it? Gentle pressure on the bruise does not cause further damage – but it will certainly cause pain!

In chronic pain it is as if the useful changes that happen to the messaging system after an injury don’t ‘switch off’ - even though any healing has finished.

The messages continue to be sent even though there is no more damage. It is a bit like having a fire alarm system that has gone off and keeps ringing even when the fire has been put out.

Medical science has not yet discovered why the pain messaging system stays “switched on” for some people after injuries have healed, or why it can sometimes start for no apparent reason. Unfortunately, there is rarely a cure for chronic pain, so our input in the Pain Centre is about helping you to manage better despite ongoing pain. Understanding why persistent pain occurs can be a helpful first step in managing ongoing pain.

How does the pain messaging system change in chronic pain?

• Pain “gates” (in the spinal cord) open and let through messages, which would not normally be painful (e.g. stretch and touch)
• Chemicals circulating in the body as a result of stress, fear or anxiety can increase the sensitivity of these gates
• Each message can set off many other nerves effectively turning up the ‘volume’ of pain
• Messages and nerves can fire off randomly with no stimulation at all
• Normally ‘inactive’ nerves in the area ‘wake up’ and become sensitive
• There are areas in your brain which have “memory maps” for pain. They can continue to signal pain even when there is no message coming from the original area of injury. This is similar to what happens in other pain conditions e.g. phantom limb pain where part of the body has been amputated but the experience of pain from that area continues ‘as if’ the limb was still present and had recently been damaged. The brain, then, can become ‘tuned’ to expect pain. Being on ‘high alert’ makes it more likely that non-painful sensations get changed into pain sensations
• Thoughts, emotions and concentration can affect how we experience pain. Pain intensity can be reduced at times of excitement and increased at times of stress

Why can’t you see my pain on a brain or neck scan?

You might think that some of the advanced brain scans or nerve tests would help pinpoint the problem. This is often not the case. A detailed brain scan can only show the physical structures, the brain, blood vessels and nerves etc. It cannot show how the pain messages are being transmitted, or how the nerves are working. Sometimes doctors can pinpoint physical changes on the scans, for example blood vessels near to the trigeminal nerve, but these are rarely the source of the problem for chronic facial pain.
Surgeons wouldn’t suggest brain or spinal surgery in these cases as it is highly unlikely to be helpful, and surgery carries significant risks. The anatomy of your brain doesn’t change over time, so there is not usually any use in repeating scans, unless there is a significant change in your symptoms.

Can I cause any damage to my head, brain, or face by being active?

With chronic facial pain, you can not cause any harm or damage to your body by being physically active, or using your head, neck, and facial muscles. Whilst it can be painful to do some things, it is not dangerous. In this situation hurt does not mean harm. You cannot disrupt the vessels in your brain or head, so try to live your life as normally as possible. If medication helps ease your pain to enable you to do normal things, then use it as advised.  You cannot ‘mask your pain’ and cause further damage.

If you can’t see a physical cause for the pain, does that mean it is psychological or ‘all in my head?

The short answer is no. Your pain is in no way imaginary or psychological in origin. The pain you are feeling is entirely real and is due to sensitivity of the pain nervous system.

Unfortunately, we can’t see that sensitivity on a scan. Scientific research tells us that low mood and anxiety can worsen existing pain problems, but this still doesn’t mean that your pain is ‘psychological’ pain. Speak to your healthcare team if you think this is an issue for yourself.

What can I do to better manage my pain?

• Understand your condition

By reading this leaflet you are already making a start with self- management. Appreciating that your pain is not dangerous and accepting that unfortunately this is something that is going to persist is the first step.

• Use medication appropriately

Your medical team may have discussed analgesic (pain relieving) medication options with you already. No medication will take the pain away completely but if you get 30-50% pain relief, then we consider this to be a good outcome. Some medications can be adjusted depending on your pain levels. It is important to find a balance between side effects and benefit.

• Look after your mood and practice stress management

We know that pain problems can be worsened by low mood, stress and worry. Many people with pain find that understanding these emotions and developing coping techniques or relaxation strategies can be helpful.

• Stay or become more active

Remember that it is safe to be active; you can’t cause any damage to your body. Trying to move and do things as normally as possible may help to desensitise your nervous system and prevent secondary postural or muscular tension problems. Trying to balance out periods of activity and rest can be useful. Also, remember that exercise and activity boost endorphins which are natural painkillers.

• Improve communication

Most people and many health care professionals do not understand chronic pain. Having pain in the face makes it even more difficult to communicate, particularly when your pain is severe. Other people may not know why there are some days when you are quiet and do not speak. Helping those around you to understand your pain, and being able to effectively communicate your needs is important.

• Have a flare-up plan

It is normal to experience severe episodes of pain from time to time. These usually settle down, but can be distressing to deal with. Developing a flare-up coping plan can be useful, particularly as in the midst of a flare-up it is difficult to think clearly, and people around you may panic.

Where can I get additional support with managing my pain?

If you feel your pain is having a significant impact on your quality of life and want to learn more about self-management techniques, please speak to your clinician about a referral to the pain management rehabilitation team. Usually this would be for an initial assessment with one of the pain specialist psychologists.

A psychologist will be able to talk with you about your suitability for pain management rehabilitation. The assessment will focus in more detail on some of the self-management strategies discussed above, and a suitable plan for additional input.

It is important to understand that this type of input focuses more on function, and less on pain relief. It is about coping better with ongoing pain, so as to improve your quality of life.

For more information you may want to look at the following resources:

Web resources

www.tna.org.uk
Trigeminal Neuralgia Association UK- facing pain together. A registered charity offering advice, support and information on facial pain

www.orofacialpain.org.uk
Demystifying chronic pain in the head, face and mouth

www.britishpainsociety.org/people-with-pain
The British Pain Society- the UKs largest professional organisation in the field of pain, with a section for people with pain

www.livewellwithpain.co.uk
The website for people who are living with persistent pain. It's completely free to use and full of trusted techniques that people have found useful in helping them get on with their lives - despite their plan.

www.flippinpain.co.uk
A public health campaign with a clear goal: To change the way we think about, talk about and treat persistent pain. Flippin' your understanding of pain could change the lives of you and your loved ones forever.

Books

The Pain Management Plan: How people living with pain found a better life: The things that helped them and the things that set them back, by Robert Lewin.

The Pain Management Workbook: Powerful CBT and Mindfulness Skills to Take Control of Pain and Reclaim Your Life, by Rachel Zoffness.