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 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.
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.
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.
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
There are only 128,000 adults in the U.K. diagnosed with ADHD. Conservative estimates put the percentage of those with the condition in the population at roughly 4%. That’s potentially 2 million individuals across the UK struggling with a number of severe impediments on their emotions, organisational and work life, finances and their close relationships.
Please have a look at the following videos to understand the issues of ADHD.
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 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 article 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
Consult your specialist neurofibromatosis adviser or GP first
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 below.
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.
Reading should never be a barrier to learning. If you want to learn, dyslexia, concussion symptoms, ADD, low vision, or anything in between should not stop you from being able to intake information quickly and effectively. Growing up with a less than perfect education system should not stop you from being able to learn. This tool can support you in your profession, at your college, at your school or simply for private browsing.
FaceIT@home is a self-guided, online tool for adults (18 years or over) in the UK. It contains eight user-friendly sessions designed to help you learn new skills, as well as providing useful tips to feel more confident about the way you look. It is available anytime from the comfort of your own home.
All you need is a computer or tablet and access to the internet to do the 8 sessions that help you with worries and problems you might be experiencing having a visible difference.
For further details on how to access the tool either, self-referral or professional referral, visit the following link and contact Changing Faces via the number listed or by filling in the contact form.
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.Catch it App info
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 worriesChill Panda App Info
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 & friendsMee Two App Info
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.Stress & Anxiety App Info
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.Thrive App Info