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.
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
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.
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.
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