During NERVEMBER (the month formerly known as November), the International Pain Foundation shines a light (an orange light) to raise awareness of neuropathic pain.
What is Neuropathic Pain?
Neuropathic pain is a form of pain that comes from damage or malfunction in the nerves themselves. Neuropathy often has no visible sign, making it difficult to explain or for others to understand. It can feel like burning, tingling, stabbing, electric shocks, or even numbness. Those sensations can vary in intensity from mild to unbearable.
There are different kinds of neuropathy, such as:
- Peripheral neuropathy affects the hands, feet, or limbs.
- Cranial neuropathy involves the nerves of the head and face.
- Autonomic neuropathy affects internal organs and body functions.
Neuropathy can appear for many reasons — it may be linked to diabetes, viral infections, autoimmune conditions, injuries, or even as a side effect of medications or treatments. But sometimes, the cause remains a mystery, which makes it even more frustrating and isolating.
Living with nerve pain is exhausting. It’s invisible, unpredictable, and often resistant to normal pain medication. Finding treatments that bring even partial relief can take years. But it’s not just the pain itself that wears you down — it’s the constant need to explain something that can’t be seen.
My Story With Nerve Pain In My Face
As many of you know, I live with trigeminal neuralgia. It’s a relatively rare condition where the nerves in the face send pain signals to the brain. In some cases, it might be caused by pressure from a blood vessel, a tumour or an injury. But in some cases, there is no known cause.
The latter is the case for me. Nobody understands what has caused my pain. My pain can be sharp and stabbing, mixed with constant burning and aching — and at times, it feels like sizzling electricity pulsing through my face. I made this video a few years ago in an attempt to explain how the pain felt.
It’s not easy to live with. But, oddly, things became easier after I finally received my diagnosis of trigeminal neuralgia.
You might wonder why that would make things easier.
Before my diagnosis, I had lived with this facial pain for around twenty years. Doctors told me to see a dentist. Dentists told me to see a doctor. I was advised to “just take some paracetamol” or told that “some people just get pain like this.” Nobody could explain why I had this intense pain nor did they attempt to investigate it. But worse than that, nobody prescribed the right medication or seemed to believe that my pain was real. You can read my story here.
Everyone Needs Hope
Eventually, someone did listen. Someone believed me. Finally, a doctor prescribed medication that could help. It wasn’t an instant fix — finding the right treatment takes time and patience — but along with that prescription came something just as important: hope.
And everyone needs hope.
Neuropathic Nerve Pain Awareness is Necessary
I want to help shine a light on neuropathic pain in all its forms — to spread awareness, understanding, and compassion for those living with it every day.
Like many disabilities, neuropathic pain is invisible. But just because people can’t see it, it doesn’t mean it’s not real. It is real. Very real.
Neuropathic pain can take so much from us, but awareness can give something back — understanding, connection, and, most importantly, hope.
If you live with neuropathic pain, or love someone who does, please feel free to share your experiences or thoughts in the comments below.
Let’s use NERVEmber to learn from one another, to listen, and to remind ourselves that we’re never alone in this 🧡
#NERVEmber #GoOrange
Thank you so much for reading.
If this post resonated with you, I’d love to hear your thoughts in the comments.
And feel free to share it with your friends or support groups.
Take care,
Liz.
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🧡 Hope shines with an orange glow in NERVEmber 🧡
Thanks for accepting me. My husband has persistent Idiopathic Facial Pain which never leaves him. This is following a mild dose of COVID. Nothing has worked so far in helping him. Ours lives have been stolen from us by this dreadful condition. He has lost his life and I have lost my husband. My search for help is never ending but it’s becoming increasingly hard to remain positive as each year rolls on without us.l’m hoping to gain some inspiration from your site to keep battling on.
Oh gosh, I am so sorry to hear about your husband. Please do take a look at my section on trigeminal neuralgia: https://despitepain.com/trigeminal-neuralgia/
I know your husband’s pain is idiopathic, but some of the treatments might be the same. Living with pain that you feel nobody understands can be extremely difficult, so I do understand. Please look after yourself as well as him…it’s not easy for you either.
Take care,
Liz
Hi my name is steve
I live with central post stroke pain
In short I live with nerve pain on the whole of my left hand side from top of my face to the end of my toes!
The pain is so bad not many people believe how I can live my life!
I’ve had a brain operation to see if it will help
I know what it’s like for you , I have bits of advice but my main one is be strong in your own head ! Don’t late the bad voice shout to loud in there,
Anyway keeping going
Oh, Steve, nerve pain throughout one side of your body sounds like a nightmare. Has the brain operation helped at all?
“Don’t let the bad voice shout too loud,” – what excellent advice!
I hope today is being kind to you,
Liz
Hello, fellow spoonie! I live with corneal neuralgia which affects the area around my eyes and spreads to my cheeks. For me it mostly feels like my cheeks are too heavy for my face, my eye sockets ache, and I get something like a headache but paracetamol does nothing for it. My doctor tried Botox and that does work, but I am due for another treatment at the hospital and currently on a waiting list. It doesn’t help that my eye doctor (the only one who knows my rare congenital disease), is now retired and I am waiting to be told who my new doctor is. I can’t get private healthcare so I’m stuck with NHS. It is exhausting to live with!
Hi there, it’s lovely to hear from you. Oh, corneal neuralgia sounds awful too. Have you been prescribed anticonvulsants at all. They do sometimes help neuralgia, rather than paracetamol. Good old NHS waiting lists! Hope you can get your Botox soon. You’re so right, pain like that is exhausting.
Take care,
Liz
I think we tried something like that but they didn’t work and I’m not keen on taking pills. My reiki practice and eye care routine seem to help, along with my moisture chamber glasses.