Due to the diversity of symptoms that may present with a Functional Neurological Disorder, and the varied potential causes/triggers that can differ from person to person, treatment plans must be tailored to suit the person’s individual need, with all health aspects being taken in to consideration. There is not a ‘one fix will fix all’ option, which can cause frustration for both the person with the diagnosis and the medical professionals, so it may take time to develop the correct treatment plan.
Historically the only form of treatment offered to those diagnosed with FNDs was psychotherapy. Due to lack of awareness among health professionals, this is still often the case even if it is not a necessary course of treatment, and frequently therapists have no knowledge of FNDs. Different treatment options are available and in many cases proving to be more successful, such as physiotherapy for movement/motor symptoms. Psychotherapy may be useful for dealing with potential triggers, and may help with coping with symptoms and lifestyle changes. However, it can potentially be detrimental to a person’s recovery if a therapist has no knowledge of FNDs, and if the need for collaborative care is not considered.
FNDs are not seen as degenerative, however symptoms for people can become chronic or worsen. Recovery from symptoms is possible, or symptoms can become manageable, but may be dependent on triggers, co-existing conditions and receiving appropriate treatment. The following treatment options should be taken into consideration for all those diagnosed with a Functional Neurological Disorder:
Evidence is growing that physiotherapy can be the most effective treatment option for those who have movement or motor symptoms such as weakness, paralysis and walking difficulties. Physiotherapy for FNDs focuses on regaining normal function, aka retraining the brain, and not focused on exercise. However, this understandingly has to be considered because, for example, a person may have been wheelchair-bound for a long period of time so muscle strength would need to be built up. Or as another example, a person may have not been able to walk unaided for some time so would need assistance with gradually increasing their levels of energy.
If your Physiotherapist has limited/no knowledge of FNDs, we suggest you share this publication with them. It has been written by some of the leading specialists in this field: ‘Physiotherapy for functional motor disorders: a consensus recommendation‘.
There is no recognised or approved medication to treat FNDs, however antidepressants and pain medication may be prescribed to help relieve possible triggers or co-existing conditions. Whilst they may be offered to help relieve symptoms, it is imperative that the administration is managed whilst taking them by a medical professional. Also consider:
- Taking antidepressants does not automatically mean your doctor thinks you are emotionally distressed as this type of medication can be used for multiple different symptoms and reasons.
- Medication can take a few days/weeks to have an effect and most are initially administered by raising the dose slowly over a period of time.
- Be aware of the medication’s potential side effects, especially when you first start taking it, and speak to a doctor if you have any concerns/questions.
- If you are on medication but still having symptoms, it may not be working or your dosage may not be suitable. If the medication is not working for you, discuss with your doctor what other options are available.
- NEVER stop taking any medication without consulting your doctor first as most require you to reduce the dosage over time to avoid withdrawal side effects.
- Whilst medication can be effective, remember that side effects can occur that may create symptoms not connected to the diagnosis, they can become addictive or over time ineffective, and certain medications are only meant to be used for a short period of time.
An Occupational Therapist’s role is to assess and support a person’s practical needs (short or long term) with everyday living whilst symptomatic. This could be aids needed for physical difficulties, help with maintaining the home and undertaking tasks, help with physical activity, and support getting back to work. Occupational therapy can play a significant role in treatment to assist with regaining normal function.
For further details about OT services offered by the NHS please SEE HERE. It is advisable that you ask for an Occupational Therapist who has an understanding of functional neurological symptoms.
Note: if you have been hospitalised for a period of time, an Occupational Therapist must assess your practical needs for returning home, and discuss and address them with you before you are discharged.
Emotional health is just as important as physical health. Problems can be due to primary or secondary circumstances. Psychotherapy can help with dealing with past emotional trauma such as PTSD, existing emotional health difficulties such as anxiety and stress, and provide support and guidance with how to cope emotionally with life changes due to poor health. This can be delivered in several forms such as Cognitive Behavioural Therapy (CBT), Mindfulness, Eye Movement Desensitisation and Reprocessing (EMDR) and talking therapy. It is advisable that you ask for a Psychotherapist/Psychologist who has an understanding of functional neurological symptoms.
People report quite frequently that Grounding techniques help them to manage symptoms. Whilst this link relates to seizures, it can also be effective to those with movement/motor symptoms.
When a person is diagnosed with a medical condition, it not only affects the person diagnosed but also those close to them. A partner or family member may become a carer and other family members may provide physical and emotional support. It is important that they are part of the collaborative care team. They can help to advocate and support the person diagnosed e.g. at doctor’s appointments and help with medication management. It is important they receive support and guidance for themselves also. You can read further information on our Carer’s page.
We advocate that ALL people diagnosed with a Functional Neurological Disorder should have their health managed by a consistent primary health provider whilst symptomatic. This health provider should work with other health professionals to follow a collaborative care programme with regular health reviews for the person, and adhere to the NICE guidelines – Patient Experience in Adult NHS Services.
Some people have found symptom relief from exploring alternative treatments. Here is a selection you may like to consider, some of which may be available through the NHS. You can search the internet for websites which explain the treatment, how it may help, and what services are available in your area. It is recommended you consult a doctor if you are considering any alternative treatments.
- Hydrotherapy is a therapeutic treatment that involves exercise and movement in water.
- Acupuncture is a therapeutic treatment that involves inserting thin needles in to the skin to stimulate nerves and muscle tissue.
- Acupressure involves applying physical pressure on the body by the hand, elbow, and other appropriate devices.
- EFT (emotional freedom techniques), also called tapping, is a form of psychological acupuncture. It involves simple tapping techniques using the fingertips on different parts of the head and body.
- Hyperbaric oxygen therapy involves breathing oxygen through a mask in a pressurised chamber.
- Chiropractic involves using the hands to manipulate the spine, other joints, and soft tissues.
- Herbal medicines are a type of dietary supplement using herbs and spices as an alternative/additional treatment option.
- Yoga is a holistic form of exercise involving posture and breathing.
- Hypnotherapy is a complimentary therapy which uses verbal communication whilst a person is hypnotised, as in a state of deep relaxation. The power of positive suggestion can then be used to bring about a subconscious change to our thoughts, feelings and behaviour.
Self care and health management
Whilst clinicians have a duty of care to you, it is also useful to take ownership of your own health management.
Self-advocacy and empowerment of your own health may include:
- When diagnosed with a potentially chronic condition, our health and wellbeing can become a vicious cycle, as illustrated below, and although it can be difficult it would be worthwhile considering options that may help to break this cycle. You may also want to visit our “Living with FND” section.
- If you develop a new symptom and are concerned, you should make an appointment to see your doctor. Never just assume it must be related to your FND diagnosis as other things can go wrong in your body, and potentially could be easily treatable. Make sure your doctor investigates your new symptom independently.
- Ensure you fully understand what a doctor is saying to you and why. Do not be afraid to ask questions.
- Know your rights for accessing your medical records.
- Keep all your health records together and be prepared for appointments. ‘I wish I had asked …’ can be eliminated if you make some notes to share with your doctor at your appointment. Most GP’s will allow up to 10 minute appointments, so if you think you need longer consider asking for a double appointment.
- If you don’t feel strong enough to discuss your health with medical professionals, or are suffering from cognitive issues, ask someone to speak on your behalf.
Finally, bear in mind your body is like a car. To make it go it needs petrol and the right type of oil, and it needs to be used regularly so the parts don’t seize up or stop working. Here are some document downloads that may help get you started in considering your self-care, exercise and diet:
- Self-care Starter Kit (The Blurt Foundation)
- Doing Sport Differently (Disability Rights UK)
- The Eatwell Guide (Public Health England)
Share with your Doctor
The FN Forum is a website that has been set up by leading specialists, to bring together medical professionals who treat people who are diagnosed with functional neurological symptoms.
For further information and details on how to sign up, which can be shared with your medical care team, please visit the FN Forum.