Podcast Summary: The MS Trust Podcast

Episode: Coping with MS Pain in the Long Term: How to Look After Your Mental Health
Hosts: Helena, with Gemma (Health Information Team)
Guests: Dr. Phil Simpson (Consultant Clinical Psychologist), Heather (person living with MS and chronic pain)
Date: December 15, 2025

Episode Overview

This episode explores the psychological impact of living with long-term MS pain (chronic/persistent pain) and provides practical strategies, therapy options, and lived experiences to support emotional well-being and mental health in the MS community. Host Helena and co-host Gemma are joined by Dr. Phil Simpson, a specialist psychologist in chronic pain, and Heather, who shares her personal journey of managing MS-related pain.

Key Discussion Points & Expert Insights

1. Understanding Chronic Pain in MS

• Definition: Chronic/persistent pain is pain lasting beyond three months, continuing after injuries have healed.
  "Pain is defined as an unpleasant sensory and emotional experience linked to actual or potential tissue damage." (Dr. Phil Simpson, 03:59)
• Acute vs. Chronic Pain: Acute pain is like a useful car alarm alerting to new damage; chronic pain is a car alarm stuck on, long after the danger has passed (06:30).
• Individual Differences: Pain is a deeply personal, subjective experience—how we feel it varies person to person.

2. How Chronic Pain Affects Daily Life

• Emotional Toll: Low mood, anger, frustration, anxiety, isolation, changes in self-esteem.
• Cognitive Impact: Pain grabs attention, affects concentration and self-worth.
• Behavioral/Social Effects: Withdrawal from activities, changes in jobs, hobbies, relationships.
• Sleep Disruption: Vicious cycle between poor sleep and increased pain.
  • "Pain impacts on sleep and then if we're not sleeping well, that impacts on how we feel pain as well." (Dr. Phil Simpson, 09:43)

3. Psychological Approaches to Pain Management

A. Therapeutic Framework

• No cure for most chronic pain; the aim is to manage and reduce its impact, not eliminate the pain entirely.
• Interventions target emotions, thoughts, behaviors, and social connections.
• "The psychological approach comes from the perspective that all pain is real..." (Dr. Phil Simpson, 13:12)

B. Types of Psychological Therapy

• Cognitive Behavioral Therapy (CBT):
  • Understands how thoughts, feelings, and behaviors interact.
  • Teaches practical, skills-based strategies like challenging negative thoughts, pacing, and relaxation.
    "CBT helps people to try and map these patterns... and throw a bit of a spanner in the works." (15:26)
• Acceptance and Commitment Therapy (ACT):
  • Focuses on changing one’s relationship to thoughts and feelings, not the content.
  • Emphasizes acceptance, mindfulness, present-moment awareness, values-driven action. "ACT is a very active therapy... about making conscious decisions in the direction of what's most important." (17:12)
• Compassion Focused Therapy (CFT):
  • Teaches self-kindness, soothes harsh inner critics, and builds emotional resilience.
• EMDR (Eye Movement Desensitization and Reprocessing):
  • Trauma-focused therapy helpful if pain is tied to traumatic events.

C. Practical Therapy Techniques (Examples)

• Spotting and challenging "catastrophizing" thinking.
• Activity pacing to avoid "boom & bust" cycles.
• Grounding, breathing, and mindfulness for anxiety and pain management.
• Value clarification: living in line with what matters most.

4. Self-help Coping Strategies

• Sleep Hygiene: Sleep routine, wind-down, removing stimulants. Strategies for awakening at night due to pain.
• Activity & Energy Pacing: Frequent rest, planning, charging energy “like a phone battery.”
  • "It's about frequent little recharge points so that it keeps going and doesn't get completely depleted." (28:26)
• Recognizing & Accepting Limits: Acceptance isn’t “giving in”; it’s choosing how to live well alongside pain.
  • "Acceptance is recognizing which aspects of the pain are not controllable and choosing to live well alongside it." (30:26)
• Metaphors Used:
  • Tug of war with a monster: Letting go of the futile battle with pain frees up energy for what matters.
  • Language preference: Avoid "warrior" or "battle" metaphors if they don't resonate; focus instead on peaceful coexistence.

5. Grief, Panic, and Identity

• Many people experience grief for their pre-diagnosis selves; this is a normal, valid emotional response (34:12).
• Panic and anxiety are natural but must be managed with education, grounding, and self-reassurance (36:48).
• Distinguish “red flag” new symptoms from baseline pain; seek professional advice when needed (39:20).
  • "Understanding what your body is telling you helps know when to panic and when to calm the system down." (41:06)

6. Unhelpful Patterns and Reframing

• Boom & Bust: Doing too much on a “good day” leads to crashes. Instead, steady pacing is essential.
• Fear Avoidance: Avoiding movement due to pain fears; gentle movement is usually beneficial.
• Self-Criticism: Replace harsh self-talk with compassion.
  • "Would I say this to somebody else?" (45:46)

7. Communicating with Others

• Pain is often invisible and hard to describe. Use concrete metaphors or describe its impact on daily life to friends/family (46:09).
• Focus on sharing "how pain affects me"—e.g., “I can do this, but it takes longer because I’m in pain.”

8. Crisis Points and Where to Get Help

• If feeling overwhelmed or in crisis, reach out for help: GP, MS Nurse, 111, or Samaritans.
  • "Tell someone else how you're feeling—share that immediately... The priority is safety." (48:50)
• Pain management programs, talking therapies (CBT, ACT, etc.)—ask your MS team or GP what’s available locally (51:55).
• Online resources recommended: “Live Well With Pain”, “Flipping Pain”, the MS Trust website.

Personal Experience: Heather’s Journey with Long-Term MS Pain

Living with Chronic Pain (56:42–78:55)

• Pain Description:
  "It's not like normal pain... For me it's like a burning ache... and it wakes you up and it stops you from doing anything." (57:10, Heather)

• Triggers: Overexertion, stress, cold and hot weather, and sometimes unpredictably.

• Medication Trial & Error:
  Tried gabapentin, now on duloxetine which helps both pain and mood, but finding the right approach took years.

• Practical Strategies:

  • Rest and relaxation (e.g. sitting with a hot water bottle).
  • Pacing activities—"found a little route" for dog walks.
  • Acceptance—learning not to fight the pain but to adapt life.
  • Mindfulness, journaling, positive affirmations, distraction.
    • "I just take deep breaths and do a check-in with how my mood is... I am allowed to slow down, I am allowed to take a rest..." (67:11, Heather)
  • Self-compassion and grieving her former self.
    • "You feel like you're trapped in your own body, you cannot get away from it... it's so hard to keep going through all the pain." (69:04, Heather)

• Advice for Others:
  "Be patient with yourself. The pain...doesn't define you. Try different things, build your own little toolkit—medication, rest, mindset, whatever works for you—and reach out to people." (75:23, Heather)

• On Support and Community:
  Connection with others who have MS is crucial; online groups are helpful.
  "Family and friends can do so much, but the people that have got it as well—there's just an understanding." (74:02, Heather)

• On Bad Days:
  "It's okay today to keep the blinds closed, stay in pajamas, and that's okay... we all have to find our own way." (78:18, Heather)

Notable Quotes & Memorable Moments

• Pain Analogy:
  _"Pain is a protective system... when you think about pain, often people think about acute pain... but with chronic pain, it's like the alarm system has got stuck on."
  (Dr. Phil Simpson, 03:59–07:46)

• Therapy Summary:
  _"What ACT tries to do is give people a set of skills where they can see their thoughts for what they are... not be pushed around by them."
  (Dr. Phil Simpson, 17:12)

• Acceptance Metaphor:
  _"Acceptance essentially is choosing to put that rope down. So the monster's still there, but I'm not in this tug of war with it anymore."
  (Dr. Phil Simpson, 31:06)

• Self-compassion:
  _"We tend to be a lot more compassionate to others than to ourselves... Compassion-focused therapy aims to try and develop a kinder, more supportive inner voice."
  (Dr. Phil Simpson, 19:28)

• Personal Wisdom:
  _"You don't have to do it on your own... You just need to find your own way."
  (Heather, 75:23/71:25)

Important Timestamps

• 03:59 — Chronic pain definition & the “stuck alarm” analogy
• 10:56 — Psychological approaches to pain
• 15:13 — Summary of therapy types (CBT, ACT, CFT, EMDR)
• 26:44 — Sleep hygiene & activity pacing
• 30:26 — What acceptance really means
• 34:12 — MS, loss of self, and grief
• 36:48 — Managing panic, alarms, and anxiety
• 45:36 — Self-compassion exercise
• 46:09 — Communicating invisible pain to others
• 48:50 — What to do at crisis point; where to get psychological support
• 56:42 — Heather’s personal story introduction
• 57:10 — Heather describes her pain experience
• 62:41 — Heather’s pain management journey, learning to listen to her body
• 67:11 — Heather’s check-in, breathing, and affirmation practices
• 69:04 — Impact of chronic pain on mental health
• 75:23 — Heather's advice for listeners & building a “toolkit”

Final Thoughts

This episode offers both expert clinical guidance and empathetic, practical wisdom for anyone living with chronic MS pain. The message is clear: pain is real, it is complex, but there are many avenues—psychological, practical, and social—for reducing its impact and maintaining hope. Support is available, and each person's journey toward coping may look different, but nobody with MS has to walk it alone.

If in crisis or struggling, reach out—to your MS nurse, GP, helplines, or online community. Compassion for oneself and trying different tools are vital themes throughout this episode.

For more support:

• MS Trust Helpline: 0800-323-839 (Mon–Fri, 10am–4pm)
• ms.trust.org.uk (resources on pain)
• Live Well With Pain & Flipping Pain (external recommended resources)