Today marks the start of National Pain Week 2023, hosted by Chronic Pain Australia.
The Children’s Tumour Foundation acknowledges that neurofibromatosis (NF) and pain often go hand-in-hand and remains a serious and under recognised issue, in fact some research suggests 1 in 4[1] people with NF1 will experience chronic pain. People with a NF2-related schwannomatosis or a schwannomatosis diagnosis tell us that they can also experience enduring pain.
NF is a genetic condition causing tumours to grow on nerves deep inside the body or just below the skins surface. These tumours are most often benign but in 10% of cases they can become cancerous. NF can also cause blindness, deafness and bone abnormalities to name just a few physical symptoms; you start to get an idea of why pain and NF often go together.
So, what exactly causes pain in NF?
Some people with NF have described their chronic pain as a physical and psychological agony, causing much distress. It's important to reiterate that others with NF will experience minimal pain throughout their own journey.
However, for those who are learning to navigate pain we understand that this stems from multiple sources, including the formation of tumours on nerves, in the muscles and particularly in the spine, as well as chronic skin itch.
Nerves that are just below your skin (called cutaneous nerves) can also dysfunction, thought to be similar to a “misfire” where your nerve sends pain signals to your brain, even when there's no reason for it.
What we know for sure is that the reasons for pain in NF are vast.
How can we manage pain in NF?
There are currently no approved treatments for NF specifically.[2]
People living with NF and chronic pain can trial a multitude of therapies including clinical and complimentary options.
Beyond physical therapies, learning to deal with the emotional impact of chronic pain is also of vital importance.
The Children’s Tumour Foundation is Australia's only non-clinical service provider for people with NF, and does not provide medical advice; however, multiple sources state that the following therapies can be useful in managing chronic pain and must be tailored to your specific needs in consultation with your medical team:
- Pain medicines
- Physical therapies (such as heat or cold packs, massage, hydrotherapy and exercise)
- Psychological therapies (such as cognitive behavioural therapy, relaxation techniques and meditation)
- Mind and body techniques (such as acupuncture)
- Community support groups.[3]
Further to this, Chronic Pain Australia also recognises that good pain management should also include:
- Developing personalised and realistic goals
- Developing a pain management plan that includes team-based care arrangements
- Improving your knowledge and understanding of chronic pain
- Supporting your skills and application of self-managing chronic pain
- Reviewing and modifying your pain management plan.
How can the Children’s Tumour Foundation help people with NF manage their chronic pain?
Connection is key in managing the emotional impact of pain. Learning you are not alone, finding support to help you identify the right therapies and talking to someone that understands can all help.
The Children’s Tumour Foundation has a free help line for people impacted by NF, and also offers a monthly NF Connect session where people can share their experiences and first-hand accounts of therapies that may be working for them to manage their circumstances.
If you would like to learn more about NF Connect please click here.
The Children’s Tumour Foundation can also help you identify NF specialists local to you to compliment or begin your pain management plan. Contact our support team.
[1] Marquez de PB, Hammond DL. Sex dependent enhancement of pain responses in a mouse model of neurofibromatosis., Proceedings of the Society for Neuroscience, 2011. [Google Scholar]
[2] Towards a neurobiological understanding of pain in neurofibromatosis type 1 (NF1): mechanisms and implications for treatmentShreya S. Bellampalli and Rajesh Khanna
[3] Pain and pain management – adults - Better Health Channel