10 December 2025
Managing nerve pain in MS
In this special bonus episode of the MS Trust Podcast, mindfulness teacher Justin Standfield shares two guided meditations designed to help ease the challenges of living with MS pain.
A reader has been enquiring on my progress since my 2020 piece on fatigue, and any insights and tools I’ve developed since. These are questions I have to admit I’d never really asked myself, so I welcome this opportunity for reflection.
Since I wrote this article, my life has undergone big change: I left my job in tech in the fall of 2019, partly because it had switched to remote work, something I found personally alienating, and professionally counter-productive. The plan was to take a mini-sabbatical and come back to software engineering around March 2020, looking for in-office positions. A certain public health emergency torpedoed this plan, teaching me in passing an important lesson on fate’s own sense of irony.
Fast forward to the fall of 2021, and I’m starting teacher training, doing a PGCE in secondary computing, through a scholarship from the British Computing Society (something about which I was initially boastful - those scholarships are quite selective on paper - until I realised that every year, the number of available scholarships is larger than the number of applicants to teacher training in computing).
I was dreading the energy demands of the PGCE: four days in school, one day at Uni, with a teaching load ramping up through the terms, and the academic side requiring the production of postgraduate level papers through the year. But fate’s own cosmic wink struck again: one of the podcasts I edited for the MS Trust in 2021 featured the story of Suzy, who, too, trained in secondary computing (also on the BCS scholarship) after her diagnosis. This gave me hope.
Ultimately I pulled it off. Even with a bout of Covid in the middle of the winter term. It did feel like I was running on adrenaline throughout, not something I could sustain. The academic side of the PGCE and my broader struggle with the organisation required of an efficient teacher (especially in training), combined with what I was learning about Special Educational Needs made me seek an ADHD assessment. I was diagnosed in July, as I qualified as a teacher.
Then, the following November, I started on stimulant medication. From this point on, I can't really comment on MS fatigue, as I've been effectively micro-dosing dextroamphetamine. It, unsurprisingly, helped. For while.
But, two years later, equally unsurprisingly, the magic is fading. Every study that tries to medicate MS fatigue has found it doesn't work in the long term. So I'm back to strategies. So, after this long introduction, here it is:
- It goes without saying, but bears repeating: sleep, diet and movement are the first thing to check, and keep up.
- A new mattress and a new pillow made a massive difference.
- More fruit and veg. Also, meal timings - fixed, and smart. Cutting as much sugar as I can manage given my poor self-control.
- Caffeine is double-edged, and ultimately probably a net negative. Also, like sugar, it will induce peaks and crashes that make it impossible to detect baseline patterns over the day.
- Getting mild exercise, outside, early in the morning (ideally not so early it's dark). Stretching before and after sleep (and even naps).
- SAD light-boxes (they're more like tablets now) in the morning during the winter.
- Speaking of gadgets, I've found a fitness tracker tremendously helpful to keep an eye on my levels of activity and sleep.
- Fatigue journaling is a massive pain, but it can yield insights that would otherwise never be noticed. Plus, now I hear they have apps, which should make the admin easy.
- I time block my day because of the ADHD, so I force myself to have rest periods. It's the hardest part. Just because you don't feel you need rest, doesn't mean you can afford not to rest (as you'll find out two hours later if you don't rest).
- I've discovered Yoga Nidra via my ADHD coach, and it's the best way to get rest in limited time. It's known scientifically as Non-Sleep Deep Rest (NSDR), and research shows its potential for recovery. It's 'sleep yoga' - a guided lying down meditation designed to keep you just at the edge of sleep. Delightful.
- Under-utilising reserves of energy can lead to fatigue just as much as over-utilising them, and under-challenging oneself ultimately reduces capability in the long term. Though over-challenging oneself will yield much more obvious problems in the short term.
- Energy has many dimensions: physical, cognitive, but also emotional/spiritual/social/creative. Activities can be taxing in one dimension, but regenerative in another.
- The impact of the same activity on energy (of whatever type) can vary wildly depending on duration (short can energise, long always drains), the context and the mood etc.
I'm privileged in being able to work to those principles, as these days I have near-full control of how I spend my days. I've taken a break from teaching to start a PhD in Education, which has flipped my neurotype vs context situation. Much as the inflexible demands of a school timetable didn't always gel with the fatigue (though you don't need to have MS to dread having Year Nine last period on a Friday), the firm structure of teaching (day, week, term, year, repeat, relatively clear expectations and deadlines) was doing wonders for the ADHD.
So I try to design my own structure, and I can keep it flexible enough to accommodate the MS. I'm lucky enough, energy wise, that my routine is less about alternating activity and rest than rotating activities which demand different type of energy, and rest - kind of like the way crops are rotated in farming, with a fallow year at regular intervals.
When it works, it's beautiful. Taking a break from work to take a walk in nature, or following household chores with a call to a friend. The problem is that a single bad night means sleeping in (a decadent seven am for me), a shortened morning routine and having to skip or re-schedule self-care. Or I'll get stuck into a problem, hyperfocus, and go over the allowed period by a factor of four, draining cognitive energy. But that's not as bad, as it often yields results. How do you think I wrote the first draft of this?
Still. Just the fact of trying, the process of data gathering, analysis, theory building, hypothesis testing, framework design, then iteration, which, when written thus, sounds exhausting, nonetheless gives me a sense of agency over my own energy management. I do it like a scientist because this is how I learn - maybe because I don't really know how to 'listen to my body' and need hard, quantitative data. I lean heavily on time-tracking and time-management because I learnt this from the ADHD. What worked for me won't work for many. But it's the agency that matters.
I encourage everyone to find their own strategies. Not for the outcome - the destination, but for the journey. For the gratifying feeling to be doing something, anything about it. Install that fatigue tracking app. Try a week with a systematic half-hour lie-down after lunch. Set a hard bedtime. Set a no-more-screen time an hour before that. Set a hard wakeup time - have you tried those dawn simulator clocks? Drop something from your diet. Take a cold shower in the morning. Take a hot bath in the evening. Create a ritual. Burn sage. Whatever works for you. Discard what doesn't, keep what does.
However we wrangle the beast of MS, mindset makes a difference. It's trite, it's twee, I hate having to write it, but it is the truth. So approaching fatigue - or MS in general for that matter - with a proactive attitude firmly lets you grab the locus of control by the horns.
