The MS Trust Podcast: Managing MS Nerve Pain—What You Can Do Yourself
Date: November 24, 2025
Hosts: Helena & Gemma
Guests: Catherine Dyer (Lead Pain Management Nurse), Justin Stanfield (MS Community Member & Mindfulness Teacher)
Episode Overview
This episode addresses a central but complex aspect of living with MS: neuropathic (nerve) pain. The discussion revolves around what people can do themselves—practical, home-based approaches for easing nerve pain, alongside medication. Listeners hear from both clinical and lived-experience perspectives, including expert pain management advice and mindfulness strategies.
Key Discussion Points & Insights
1. What Does MS Nerve Pain Feel Like?
(00:53–02:16)
- Nerve pain is highly individual and “invisible”—often hard for people to describe and for others to understand.
- Real MS community descriptions include:
- “Electric shocks through my face” triggered by yawning or a cold breeze (Kathleen, 01:14).
- "Constant tingling, pins and needles, stabbing pains" (Caroline, 01:14).
- “Fizzy fingers, wet-feeling hands, pain like a fairground ride” (Karen, 01:41).
- Unique sensations: burning, icy feet that aren’t cold, bear hug, hot lava.
“It’s clear that nerve pain in MS is complex. It’s unique to each person, it can be debilitating, and it’s often invisible and really so hard to describe.” – Helena (02:16)
2. Why Focus on Self-Management?
(02:30–03:56)
- Medication alone rarely resolves nerve pain fully—self-management is crucial.
- Managing pain is “like a jigsaw”—combining drug treatments, therapies, lifestyle changes, and coping strategies.
“Pain is such a personal and complex issue… medication on its own can’t always get rid of nerve pain completely. So self-help or self-management approaches are really important, too.” – Gemma (02:58)
3. Interview with Catherine Dyer, Lead Pain Management Nurse
(04:07–48:15)
Understanding MS Nerve Pain
- Caused by demyelination: immune system attacks the myelin sheath, disrupting nerve signals (06:10–08:20).
- Pain can include sensations like numbing discomfort (hyperalgesia), cold, dripping water, crawling sensations, and sudden electric shocks (barber’s chair pain, Lhermitte's phenomenon, bear hug, etc.).
“Nerve pain in MS comes largely from damage to the central nervous system… I describe it a bit like the protective plastic around an electric cable.” – Catherine Dyer (06:10)
Drug Treatment for Nerve Pain
(11:13–14:09)
- Common drugs: antidepressants (amitriptyline, duloxetine), antiepileptics (gabapentin, pregabalin, carbamazepine). May relieve pain, but rarely remove it entirely. Significant risk of side effects, especially with polypharmacy.
“If you’re only looking at medication, you’re probably going to be disappointed.” – Catherine Dyer (13:44)
Triggers & Challenges
(14:09–16:12)
- Triggers: cold weather, illness, stress—sometimes there’s “no rhyme nor reason.”
- Unlike mechanical pain, nerve pain can flare up unpredictably, making planning difficult.
Lifestyle Changes: Strategies & Approaches
(16:26–22:43)
The Jigsaw Analogy (18:28):
- “Pieces” include: exercise/activity, psychological wellbeing, medication, pacing, relaxation.
- Too much of any one thing (activity or distraction) can backfire—variety is key.
- All forms of movement, including adapted yoga or Pilates, help joints, muscles, organs, mood.
- Pacing is critical—break tasks into smaller chunks, allow time to recover, avoid the “boom and bust” cycle.
“If you do an hour of ironing and you crash and have to lay down for an hour afterwards, that ironing actually took you two hours. If you break that up, you might finish sooner and save energy for something you enjoy.” – Catherine Dyer (21:36)
Mood & Mental Health
(22:54–26:06)
- Mood and pain are physically and neurologically linked.
- Important: Pain is real and not “in your head.”
- Build in small pleasures to your day, not just chores—prioritize enjoyable activities.
Relaxation & Distraction Techniques
(26:06–32:20)
- Relaxation calms overactive nerves, but everyone’s approach is different.
- Mindfulness is powerful: brings focus to present, uses “inhibitory” pathways to soften pain experience (27:00–29:53).
“When you boil the kettle, use those three minutes for mindfulness—not unpacking the dishwasher or texting.” – Catherine Dyer (29:54)
- Distraction: TV, conversation, TENS, hobbies. Use in moderation—don’t rely on it exclusively, or pain may rebound.
Virtual Reality for Pain
(32:20–34:09)
- Some clinics use VR goggles to simulate relaxing environments, aiding relaxation for those who struggle to imagine such places.
Pain Clinics—What to Expect
(34:33–41:30)
- Multidisciplinary assessment (physical, emotional).
- Focus on a holistic plan: medications may be reduced if not helpful, plus education, psychology, exercise, sleep, relaxation programs.
- “There is no quick fix—but pain clinics support you to find your own jigsaw pieces.”
“We don’t provide easy solutions… but we can give you the info to have properly informed conversations.” – Simon (74:25)
Recreational Drugs & Honesty
(41:04–44:36)
- Cannabis and other substances are common but evidence for efficacy is limited. Pain services aim to be non-judgmental, focusing on safety and honest communication.
Support for Those Struggling
(44:36–47:33)
- Reach out: talk to friends/family, GPs, charities, specialist helplines, NHS talking therapies.
“The most important thing is to make sure you’re safe, and talk to somebody.” – Catherine Dyer (44:51)
Final Note
(47:33–48:15)
“You’re all experts in managing… Finding your own bits of your jigsaw is really important, and we’re just there to help you put the bits together.” – Catherine Dyer
4. Mindfulness Spotlight: Justin Stanfield’s Approach
(50:00–68:05)
What is Mindfulness?
(50:00–52:51)
- Mindfulness doesn’t remove pain, but changes how we experience/react to it: reduces distress, shifts focus, breaks the cycle of “secondary pain” (worry/fear about pain).
“Worrying about pain is a bit like poking a sore tooth with your tongue—checking in, noticing, and escalating it.” – Justin Stanfield (50:40)
How It Works
(53:07–55:16)
- Mindfulness can retrain attention away from pain and reduce “secondary suffering.”
- Brain scans show experienced meditators actually process the unpleasantness of pain differently.
Starting Mindfulness Practice
(55:16–57:32)
- Some effects are immediate; others build with a few minutes of daily practice. “One of several tools in your kit.”
Breathing Techniques
(57:32–60:28)
- “Breathing into the pain” doesn’t remove it, but softens the mind and body’s resistance. Provides a steady anchor.
“Noticing the pain and being an observer rather than being consumed by it… the breath can be a physical anchor.” – Justin Stanfield (59:36)
Guided Meditation for Pain
(60:51–67:25)
Justin leads a mindful breathing and pain-awareness meditation, emphasizing acceptance, non-judgment, and returning attention to the breath when overwhelmed.
“This is a moment of discomfort. Discomfort is part of being human. I’m here with myself.” – Justin Stanfield (65:49)
Resources & Getting Started
(68:05–69:24)
- Recommended mindfulness apps: Calm, Headspace, Insight Timer.
- Community classes, online classes, and MS Trust resources are available—practice is fully adaptable to ability and mobility levels.
5. MS Trust Helpline Team Introduction
(69:39–76:04)
- Listeners meet the warm, experienced team handling helpline calls, emails, and messages—Simon, Flora, and Corinne.
- Helpline supports anyone affected by MS: people with symptoms, those pre-diagnosis, newly diagnosed, family, friends, professionals.
- Most common questions: symptoms (pain, fatigue, altered sensations), benefits, work, housing—“MS is about more than medicine.”
- Encouragement to reach out—information and understanding are available, even when there aren’t simple answers.
“If you don’t know where to turn, turn to us.” – Simon (74:25) “Don’t hold it all inside.” – Flora (75:12)
6. Tips from the MS Community
(77:10–77:56)
- Caroline: Accept symptoms, adapt routines.
- Sally: Swimming, physio, and podcasts (especially at night).
- Jane: Yoga, relaxation, being aware of temperature triggers.
- Judy: Distraction—TV, family, keeping busy.
- Karen: Humor—“a bit of swearing goes a long way!”
Memorable Quotes
- “Pain is not psychological, pain is not something you’ve made up and that you’re just not coping very well.” – Catherine Dyer (23:26)
- “If you rely on one way of managing your pain … then if that way fails, you’re left with not much else.” – Catherine Dyer (18:28)
- “You might be doing your best to deal with it, but it can help to talk to people who understand MS.” – Flora (75:12)
- “This is a moment of discomfort. Discomfort is part of being human. I’m here with myself.” – Justin Stanfield (65:49)
Key Timestamps
- 00:53–02:16: Community descriptions of nerve pain
- 04:07–48:15: In-depth interview with Catherine Dyer (pain science, strategies, pain clinic overview)
- 50:00–69:24: Mindfulness for pain with Justin Stanfield (explanation, guided practice, resources)
- 69:39–76:04: Meet the MS Trust helpline team
- 77:10–77:56: Community tips for coping
Resources Mentioned
- MS Trust Pain Resource: [mstrust.org.uk, HSZ, P for pain]
- Helpline: 0800-323-839 (Mon–Fri, 10am–4pm)
- Recommended Mindfulness Apps: Calm, Headspace, Insight Timer
- Local and online mindfulness classes
- Pain support charities: Pain Toolkit, Versus Arthritis
Closing Thoughts
MS nerve pain is multifaceted, invisible, and unpredictable—but self-management gives people a chance to regain some control. Medication, lifestyle adjustments, pacing, psychological strategies, distraction, and especially mindfulness are all valid “pieces of the jigsaw.” Support is always available—through clinicians, community tips, helplines, and evidence-based resources like those from the MS Trust.
“Finding your own jigsaw is really important—and we’re here to help you put the pieces together.”