Recovery

There are few studies examining the long-term effectiveness of treatments on reducing and/or completely eliminating the number and intensity of FND symptoms.

A study by Theuer et al, (2020) examined the outcome of patients with functional motor symptoms admitted to the Belo Horizonte inpatient unit of the Sarah Rehabilitation Hospital Network from 1997 to 2018.

Patients were involved in a multidisciplinary rehabilitation programme (individualised for each individual; all patients received physiotherapy, while 140 also received at least one psychological treatment). Patients were also followed up after treatment, ranging from one month to twelve years. They found that they had,

  • 21.2% had a complete remission of symptoms, while

  • 3.2% even had spontaneous remission,

  • 33.7% had moderate to marked improvement,

  • 35.9% of individuals experienced no change,

  • 6.5% of patients experience relapses, with periods of improvement and worsening,

  • 2.7% had a worsening of the disorder.

In a study by Gelauff et al (2019), patients were contacted 14 years after diagnosis FND and most still had symptoms. Despite this,

  • 20% fully recovered,

  • 51% had improved motor weakness of the limb,

  • 23% experienced neither improvement nor worsening, while

  • 14% experienced a worsening of symptoms.

Despite the data, it is important to note that it is only recently that conceptualisation and the communication, understanding and timeliness of diagnosis have changed. It is also only in recent years that the aetiological factors and mechanisms underlying the maintenance of the disorder, as well as the importance of individualised interdisciplinary treatment, have been more emphasised and taken into account. In recent years, there has also been a greater emphasis on neuroscientific knowledge being incorporated into the design of more effective rehabilitation programmes.

Thus, complete remission is possible, but requires comprehensive treatment, identification and management of triggers and maintainers of the disorder, identification of potential reinforcers for secondary benefits, a relapse management plan, as well as treatment and management of associated disorders and/or symptoms.

Some factors that perpetuate FND symptoms

    • Worrying about physical symptoms can increase and intensify them

    • Associated symptoms such as chronic fatigue and pain, associated psychiatric disorders, sleep disturbances, irritable bowel syndrome, etc.

    • Focusing only on the physical aspects of treatment and neglecting the psychological aspects, such as acceptance and understanding of the diagnosis, identification of negative beliefs and thoughts about FND, identification of psychological triggers that initiate and/or exacerbate the course and intensity of symptom expression.

    • Habituation defects

    • Increased self-monitoring of symptoms

    • Increased focus on the body's external features

    • Functional and structural brain abnormalities

    • Abnormal attention to the affected area

    • Expectations and beliefs about the disorder

    • Deficits in the sense of control over one's actions and movements

    • Difficulties in integrating information from the external and internal environment

    • Defects in the limbic system, sensorimotor areas and prefrontal cortex (Fabio and Elliott, 2019)

    • Patient identity can amplify symptoms

    • Patient identity can benefit the patient in terms of exclusion from normal social responsibilities such as work

    • Receiving an invalidity pension

    • Pronounced stress-relieving disorder for problems in interpersonal relationships, arguments...

    • Relieving stress and pressure related to school and/or work

    • Increased attention from others

    Even if you identify the presence of secondary benefits in a patient that prevent the effectiveness of treatment, it is important to address the topic in a compassionate and empathetic way. This is because the secondary benefit amplifies symptoms through a process of contingent learning, where there is an alternation between positive reinforcement (e.g. increased attention and care from family members) and negative reinforcement (e.g. avoidance of social responsibilities such as going to work). Both processes of amplification offer the individual some kind of reward (e.g. absence from work also offers absence from work stressors), which perpetuates their cycle. The secondary benefit thus does not represent a conscious and deliberate perpetuation of the disorder, but a learned response that can be eliminated or reprogrammed through talk therapy. Ultimately, it is crucial not to convince patients that secondary benefits perpetuate symptoms if we do not have sufficient evidence or confirmation from the patient. This is because in some patients other factors are more likely to be present that maintain and/or worsen FND symptoms.

Coping with relapses

Both scientific studies and the experience of clinicians involved in the treatment of FND patients point to the fact that FND is characterised by coping and alternating between periods of worsening and improving symptoms. Unfortunately, the treatment process is not linear, which can lead to feelings of anger, frustration and despair about improvement. Patients play an active and crucial role in the treatment process, and any setback can lead to feelings of failure and poor prognosis. It is important to recognise that FND is a complex disorder, triggered and maintained by a combination of multiple physiological, psychological and sociological factors, and that most patients have co-occurring disorders and/or symptoms that either prevent or slow down the course of treatment.

Tips for coping with relapses:

  • Accepting and communicating that relapses are an inevitable part of treatment FND

  • Reinterpreting a relapse (Changing your mind "I'm back to square one. I will never make it." to "I don't have full control over my treatment, but I have or can try to have control over the possible triggers of relapse and my response to relapse.")

  • Support from family members and professionals

  • FND diary to help you identify common points during periods of relapse (e.g. similar life stressors, worsening of associated symptoms)

  • A relapse management plan, developed with the support of a professional

  • Seeking and accepting medical help for more difficult and prolonged episodes of relapse

  • Fobian, A. D., and Elliott, L. (2019). A review of functional neurological symptom disorder etiology and the integrated etiological summary model. Journal of Psychiatry & Neuroscience, 44(1), 8-18.

    Gelauff JM, Carson A, Ludwig L, et al. The prognosis of functional limb weakness: a 14-year case-control study. Brain 2019;142:2137-48.

    Theuer, R. V., Neves, S. V. N., and Champs, A. P. S. (2020). Rehabilitation for motor functional neurological disorder: a follow-up study of 185 patients. Arquivos de Neuro-Psiquiatria, 78, 331-336.