Persistent Idiopathic Facial Pain : University College London Hospitals NHS Foundation Trust

This information is intended for patients under the care of the Facial Pain team at the Royal National ENT and Eastman Dental Hospitals division. The information is to be read in addition to information provided by and discussion with the clinical team.

If you have any queries or concerns about your care, please do not hesitate to speak with a member of our team who will be happy to help.

What is Persistent Idiopathic Facial Pain (PIFP)?

Persistent Idiopathic Facial Pain (PIFP), formerly known as ‘Atypical Facial Pain’, is a condition where patients experience pain in one or more areas of the face which isn’t related to an underlying issue, such as toothache.
It is a long-standing condition, present for more than three months and resulting in pain most days.
It does not have a specific trigger and is often described as a constant or frequently recurring pain that can significantly affect a person’s quality of life.
It is rarely a sign of serious disease.
Currently there is no identifiable cause even after thorough medical evaluation.
PIFP is not a sign of cancer and does not increase your risk of developing cancer.

Who gets PIFP?

PIFP is relatively rare; it can affect any age group however it is more common in patients over 40 years old, it is not gender-linked (ie men and women are equally affected).

PIFP can be related to prior dental treatment, infection or facial injuries, but often will have no obvious cause.

What might I experience if I have PIFP?

The pain associated with PIFP is often described as a deep, aching, itching, tingling or burning sensation that is constant or nearly constant.
PIFP will commonly present on one side of the face, commonly affecting the upper jaw, and then may spread to involve a larger area. It can be difficult for patients to localise the pain.
The pain can vary in intensity through the day but is typically present most of the day.
There may be episodes of exacerbation (pain changing or becoming worse) which can feel like electrical shocks, throbbing, shooting or stabbing pain.
There may be increased sensitivity, for example to touch.

What causes PIFP?

Scientific studies suggest that PIFP is likely to be a neuropathic condition (a change in the way nerves deal with sensation of the face and mouth) which leads to altered signals reaching the brain; this can result in pain, discomfort, or a burning sensation. Often, we do not know why this happens.

The altered nerves continue to send pain trigger signals (called nociception) to the brain. It is thought that changes may occur within the brain over time which changes the way the pain is experienced. The nerves can become oversensitive and behave as though there is ongoing disease or injury, so the person experiences pain. Research has shown that there are clearly identifiable areas in the brain where pain is monitored, this confirms that the pain is real and not imagined. These pain signals are affected by a variety of factors including mood, thoughts and behaviours.

What are the effects of living with PIFP?

Every person’s experience can be different, some find their symptoms do not have a major impact on their life, some find the symptoms annoying or frustrating and others find PIFP very challenging / distressing.

Common side effects reported include being unable to join or having to cut back on previously enjoyable activities, changing eating habits, avoiding movement, disturbed sleep, worrying about the future, losing self-confidence and feeling more worried, angry, irritable or low in mood.

Managing PIFP symptoms

Although living with PIFP can be challenging, many people find ways to live positively despite their symptoms and maintain a good quality of life. Some helpful strategies include:

Psychological therapies that promote psychological flexibility and life engagement in the presence of pain. These may include cognitive behavioural approaches, acceptance and commitment therapy, compassion-focused therapy and mindfulness approaches or a combination of these.
Pain medication. Medications, such as paracetamol, aspirin and ibuprofen do not usually relieve persistent pain. Medications which can help reduce the symptoms associated with PIFP include amitriptyline, duloxetine, gabapentin or pregabalin. Medications rarely provide complete relief but can reduce the intensity and severity of the symptoms, however, they can result in side effects which may outweigh the benefits.

Conclusion

Persistent Idiopathic Facial Pain is a challenging condition, but with the right approach, its impact on day-to-day life can be minimised. It is important that patients work with their healthcare team to develop a treatment plan which meets their needs. It is also important to remember that support is available to help live better with this condition.