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Pain Management & Wellbeing

Nerve Tumours UK wants to make your life with NF as pain-free and as comfortable as possible so you can live your best life. Our Specialist NF Nurses have helped to advise us on a number of alternative methods of dealing with pain management and looking after your wellbeing. 

These are just guidelines and options. Consult your Specialist NF Advisor or GP first.

Mindfulness

          Itching

          Sleep Deprivation

          Tinnitus

General Pain Management

          Acupuncture

Mindfulness

Itching

Mindfulness is often associated with stress, anxiety, depression, and other mental health topics. But it can also be used to treat a number of other different symptoms including itching.

Mindfulness refers to a state of mind where we pay close attention to the present moment – to the external environment around you, your internal thoughts and feelings, and your physical sensations. It is about being present in the moment, noticing - but not judging or trying to alter - how you feel.

Itching is a common symptom of NF and can lead to irritation and pain. If you want to try some guided meditation specifically to help with itching click on the button below.

You can also use meditation during the day to help manage itching by focusing on your breathing at any point. This is a great way to become mindful in an easy way helping to focus your attention. Watch this short guided meditation video on mindful breathing. 

Source: NHS - Every Mind Matters

The British Association of Dermatologists (BAD) have produced a helpful website called skin support which acts as a hub to provide a wealth of information on various skin conditions, self-help materials and support services. 

Sleep Deprivation 

If you are struggling with sleep, meditation can be a useful tool to overcome this. Meditation for sleep is a specific, guided experience that offers a natural sleep aid all on its own, allowing us to let go of the day—everything that’s happened and everything that’s been said — so that we can rest the mind while simultaneously resting the body.

Headspace have a playlist specifically for this purpose; click the button below for more info. 

Headspace App

Offers guidance on a number of meditation practices and has many playlists available on YouTube

Download the Headspace App

Tinnitus

If you are suffering from symptoms of tinnitus the British Tinnitus Association have lots of useful information on how to deal with tinnitus on their website. Including recommending sound enrichment therapy; which uses the deliberate use of any sound to reduce tinnitus awareness or reduce the distress associated with it, they have made a useful guide.

The British Tinnitus Association also have a number of great videos on YouTube which use music or sound enrichment to help ease the symptoms, see below. 

General Pain Management

Acupuncture

Acupuncture can be used to treat pain, stress, worries and tension. It is recommended as a safe method, following a consultation with your NF specialist or GP. 

We have consulted with the British Acupuncture Council to see whether Acupuncture can be used to treat pain symptoms for people diagnosed with NF. They have recommended acupuncture as a safe method to help people with NF as long as no tumours or bumps are directly needled, making sure that the needles are inserted into healthy areas of the skin and that there are no clinical red flags present.

A list of the symptoms that acupuncture can help with are:  

  • Stimulate weakened/damaged nerves
  • Offer pain relief by relieving pressure
  • Help with poor circulation
  • Headache and nausea relief
  • General or specific pain relief
  • Helping to give emotional support and addressing anxiety issues

Watch their short video helping to explain acupuncture and its benefits with pain management here:-

You can also find a more detailed information below - 

If you think acupuncture may be a helpful treatment and want to find out more information on research and the practice of acupuncture, or to find an acupuncturist near you, please contact the British Acupuncture Council: 

The Association of Acupuncture Clinicians represents practitioners who have studied Traditional Acupuncture to degree level.

Neuropathic pain, sometimes in the core of the body, sometimes in the extremities, is often experienced with NF. Acupuncture is a holistic system of treatment that can help the body to relax, release natural anti-inflammatories and reduce pain signals.  

Symptoms of NF can be varied and often be present before a diagnosis.  They are also ones that might not necessarily lead to a conclusion that something needs further investigation such as headaches, anxiety, stomach aches, worries, behavioural issues and differing timescales of maturity.  Some of these symptoms can be related to NF and some of them may be linked to stress.  

Acupuncture can help the whole family.  It can be difficult to know that someone in the family needs a little more help and understanding.  Acupuncture can also be a great natural way of managing stressful situations, reducing worries and tension.  Acupuncture cannot cure a condition such as NF but it can help with the symptoms, making day to day life easier and more comfortable. 

Acupuncture is an evidence based system of treatment that has a huge amount of research behind it in treating many different symptoms.  For more information as well as how to find a qualified practitioner bound by high standards of training, safety and integrity, please visit www.associationofacupunctureclinicians.co.uk where you will find a membership body of dedicated, professional practitioners ready to help.  

Consult your Specialist NF Advisor or GP first

We have shortlisted a number of other useful websites that help to provide more information on understanding and managing pain:-

NHS Live Well

NHS self-help advice on how to deal with general pain management.
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Visit Website

The Pain Toolkit

A simple information toolkit that provides you with handy tips and skills to support you along the way to managing your pain.
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Visit Website

The University College of London

UCLH have a great source of self-help resources for pain management including videos, books & website suggestions. 
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Visit Website

Retrain Pain Foundation

Free online pain & relief education. Helping pain patients throughout the world gain access to accurate & up to date information about pain rehabilitation.

Visit Website

Neuro Symptoms.org

This website was established to provide in depth resources to those dealing with pain and to help patients to manage any pain they are experiencing.

Visit Website

Get Self-Help

A great user friendly website with in-depth explainations on mindfulness incl. music, videos & book recommendations.
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Visit Website

Gastrointestinal Stromal Tumours (GIST)

A Beginners Guide for Patients by Patients - This booklet aims to explain GIST cancer and how it is managed, for all GIST patients, their relatives/friends.

Visit Website

Jon Kabat-Zinn

Jon Kabat-Zinn guides you through the mindfulness meditation for pain relief - an audio excerpt from the full two CD program.

Visit Website

Act Mindfully

Dr Russ Harris has free written resources & lots of free audios, focusing on acceptance and commitment therapy with mindfulness. 

Visit Website

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis

Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches

Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK