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Mindfulness, Support & Pain Management Apps and Resources

Nerve Tumours UK wants to make your life with Neurofibromatosis as pain free as possible so you can live your best life. Our specialist neurofibromatosis nurses have helped to advise us on a number of alternative methods of dealing with pain management. 

These are just guidelines and options. Consult your specialist neurofibromatosis adviser or GP first.

Mindfulness

          Pain Management & Itching

          Sleep Deprivation

          Tinnitus

General Pain Management

Acupuncture

Family Planning

Video-Calling with a Visible Difference

NHS Apps Support Library

Mindfulness

Pain Management & 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 neurofibromatosis 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 here

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

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

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

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

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

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

Jon Kabat-Zinn

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

NHS Live Well

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

Acupuncture

We have consulted with the British Acupuncture Council to see whether Acupuncture can be used to treat pain symptoms for people diagnosed with neurofibromatosis. 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

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

You can also find a more detailed article on the benefits of treating neuropathic pain here:  

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 

Consult your specialist neurofibromatosis adviser or GP first

 

Family Planning 

Preimplantation Genetic Diagnosis (PGD) is a type of IVF which aims to avoid passing on a genetic condition. Embryos are created outside of the body and tested; embryos not affected are then placed back into the womb in the hope a pregnancy occurs. If you would like to discuss this topic further, in the first instance please contact your GP and ask for a referral to your local Clinical Genetics Unit or a local genetic counsellor. You can find further information on the following at Guy’s and St Thomas

The Birmingham Women’s and Children’s Hospital also have a really informative leaflet on options for testing during pregnancy.

We advise seeing a local genetic counsellor to discuss this in the first instance.

Video-calling with a visible difference

Here are some thoughts on how to manage worries and concerns when video-calling. It may be helpful for you if you are:

  • somebody with a mark, scar or condition affecting your appearance (visible difference)
  • the parent/guardian, teacher, youth worker or employer of somebody with a visible difference

What are the challenges?

The COVID-19 pandemic has prompted a big surge in the use of video-calling software such as Zoom, Teams, FaceTime, Houseparty and Skype. Many people have had to adjust suddenly to relying on these for work, as well as to socialise remotely with friends and family. Our whole lives have moved online.

This can be a great way to stay connected, but there are many reasons people may find video-calling challenging – especially if you have a visible difference. If you do, you’re not alone. From what we hear from our community, this can raise particular challenges or anxieties for those with a visible difference.

NHS Apps Support Library

We have shortlisted several apps from the NHS Apps library that may offer support and guidance to people living with Neurofibromatosis.

Catch It

Learn how to manage feelings like anxiety and depression with Catch It. The app will teach you how to look at problems in a different way, turn negative thoughts into positive ones and improve your mental wellbeing.

Find out more

Chill Panda

Learn to relax, manage your worries & improve your wellbeing with Chill Panda. The app measures your heart rate and suggests tasks to suit your state of mind. Tasks include simple breathing techniques and light exercises to take your mind off your worries

Find out more

Mee Two

A safe and secure forum for teenagers wanting to discuss any issue affecting their lives. You can anonymously get advice from experts or other teenagers going through similar experiences in areas such as mental health, self-harming, relationships & friends

Find out more

Stress & Anxiety Companion

Stress & Anxiety Companion helps you handle stress and anxiety on-the-go. Using breathing exercises, relaxing music and games designed to calm the mind, the app helps you change negative thoughts to help you better cope with life's ups and downs.

Find out more

Thrive

Thrive helps you prevent and manage stress, anxiety and related conditions. The game based app can be used to relax before a stressful situation or on a more regular basis to help you live a happier, more stress-free life.

Find out more