Chronic Pain in NF2-SWN (Kim)

Chronic pain


I wake up in the morning & before I open my eyes I assess, has yesterday’s headache dissolved as I slept? Has the neuropathic pain in my hands & feet left the building? How about that troublesome hip & lower back pain? Oh & then there’s the facial pain. Eenie meanie miney mo…..

It burns, it stabs, it sends little electric shocks shooting down my body & firing off in my foot.

According to the NHS, chronic pain is pain that last longer than 12 weeks, despite being treated with medication & other therapies. Many people living with long term conditions experience chronic pain, including those with NF2-SWN

I don’t remember not having pain to some degree. I’ve always had headaches, even way before I was diagnosed with NF2-SWN. I have peripheral neuropathy, surgery side effects & tumors which have all caused nerve damage which in turn causes pain.

Living with chronic pain is not just physical, there’s the psychosocial effects that go along with it. The impact on mental health can be devastating & socially it can be a difficult balancing act.

Most days I’m able to push through the pain, carry on with my day. Some days it takes extra pain killers & occasionally pain takes over & demands a rest day. I try not to rely on pain meds, I’m not keen on taking pills everyday just to get through. I’ve found keeping my hands & feet warm helps with the neuropathic pain. Stretches & massage for the spasms & meditation because mind over matter really can help.

I’m determined to stay as active as possible, I walk, swim & practice yoga & meditation. There are days when I feel strong & breeze through, there are days I only manage a 5 minute walk or 10 minute yoga routine & days where just the thought of it hurts. But it’s important to keep trying, in the words of Dory…..just keep swimming.

– Kim

This blog has been created as a way to share stories, ideas, positivity and even sprinkle in some science. Everyone is welcome here and warmly encouraged to join us in contributing to our community through this blog. If you would like to add anything (anything at all!) then please contact myself, Grace Gregory, at and we can pop it up on our blog. Watch this space and please join in helping us all connect and share with one another!

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