Pain from tics – the part of the iceberg no one speaks about.....
Tic disorders (TDs) such as Tourette Syndrome are complex neurological conditions characterised by tics which are involuntary vocal and motor movements. Pain is an invisible and unexplored aspect of tic disorders. Pain may be produced by the physical effort of the tics, the repetitiveness of tics and the consequences of tics, for example injuries (Anderson et al 2019). Issues such as waxing and waning of tics and repetitive movements create unique challenges to professionals in terms of treatment and management.
In April 2021 NICE (National Institute for Health and Care Excellence) published guidelines about the assessment and management of all chronic pain [NG193].
The guidelines discuss chronic primary pain but also chronic secondary pain. It has been suggested that the persistent pain experienced from tics and tic disorders like Tourette Syndrome falls into the chronic secondary pain category. While the guidelines cover assessing all types of chronic pain, it only makes recommendations on the management of chronic primary pain (this is pain that persists or recurs for longer than 3 months and cannot be accounted for by another diagnosis, or where it is not the symptom of an underlying condition).
The guidelines advise that when assessing all types of chronic pain, clinicians should take a person-centred approach to identify factors contributing to the pain and how the pain affects the person's life. Clinicians would be expected to use their clinical judgement, guided by relevant guidance, if available, to make decisions on how to treat the condition, or resulting pain, appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. A positive development is that the recommendations suggest individualised assessment of patients in pain and for shared decision-making with the patient.
There is the potential to include a pain assessment and treatment for people with painful tics and encourage healthcare practitioners to be aware of and use the guidelines for patients with tic disorders and painful tics. However, these guidelines do not specifically include the management of pain where an underlying condition accounts for the pain, such as Tourette Syndrome. There is a concern that patients who are diagnosed with secondary pain may not be properly recognised nor treated appropriately.
The British Pain Society and the Faculty of Pain Medicine of the Royal College of Anaesthetists criticised the guidelines for a lack of pathways for the treatment of secondary pain for patients, which would apply to those with tics and tic disorders. What is needed are clear pathways for patients to access pharmacological, psychological, physical therapy, exercise, acupuncture, electrical physical modalities, self-management and pain management programmes for their painful tics.
Patients with tics and tic disorders appear to be outside the scope of the NICE guidelines on pain and the guidelines do little to address the availability and delivery of services for patients with painful tics which remains highly variable across the country. There is an assumption that management of chronic secondary pain will be covered under condition-specific guidance. As there is alack of any NICE for tics and tic disorders such as Tourette Syndrome this continues to add to the difficulties to access not only any treatment and management of Tourette Syndrome but also in turn any recommended treatment or management of the pain from this condition.
Taylor, E., Anderson, S.M., & Davies, E.B. (2022). “I'm in pain and I want help”: An online survey investigating the experiences of tic-related pain and use of pain management techniques in people with tics and tic disorders. Frontiers in Psychiatry, 13. Click here
Chronic pain (primary and secondary) in over 16s: assessment of all chronic pain and management of chronic primary pain
Anderson S, Edwards M and Murphy T. Pain and tics: a daily experience [version 1; not peer reviewed].
F1000Research 2019, 8:744 (poster)