Podcast Summary: The MS Trust Podcast

Episode: Why can’t I sleep? Night-time MS symptoms uncovered
Date: August 13, 2025
Hosts: Helena and Nick
Guests: Dr. Rod Middleton (UK MS Register), Dr. Laura Edwards (Nottingham University, Neurorehabilitation)

Episode Overview

This episode shines a light on the often-overlooked problem of sleep disturbances and night-time symptoms in Multiple Sclerosis (MS). Host Helena, herself living with MS, is joined by data expert Dr. Rod Middleton and neurorehabilitation specialist Dr. Laura Edwards to explore why MS symptoms become more troublesome at night, what data reveals about these issues, and practical approaches for management. Real-life questions from listeners are discussed, and both evidence-based insights and anecdotal solutions are provided.

Key Discussion Points & Insights

1. The Scope of Night-Time Symptoms in MS

• Prevalence and Impact
  • Night-time MS symptoms—such as spasms, pain, restless legs, cold/burning sensations, nocturia (night urination), and temperature dysregulation—are highly prevalent and deeply impact quality of life.
  • “If you have a bad night’s sleep, then generally that is impacting your day afterwards as well.” — Helena [00:30]
  • Stat: 90% of people with MS report some form of fatigue [07:39]; over 75% experience "bad sleep" per new UK MS Register data [14:15].

2. What Does the Data Say?

• UK MS Register Insights (Dr. Rod Middleton)

  • The Register recently launched a co-created sleep survey (using the Pittsburgh Sleep Quality Index) to capture holistic data on sleep in MS [06:11].
  • Key findings show MS patients report much higher rates of sleep problems than the general population (over three-quarters classified as poor sleepers) [14:15].
  • Factors influencing poor sleep include employment status, smoking, increased disability, anxiety/depression, and especially higher severity of fatigue [11:42].
  • “More than three-quarters of the population of people with MS indicated that they had bad sleep. So this is a significant problem...” — Dr. Rod Middleton [14:15]
  • There’s a complex tangle between fatigue and sleep—a “chicken and egg” question as to which causes which [07:39, 11:42].

• Major Night-Time Symptoms Reported

  • Restless leg syndrome (more common in women, hence in MS)
  • Sleep apnea
  • Pain and spasticity
  • Insomnia

3. Why Are Night-Time Symptoms Worse? (Dr. Laura Edwards)

• Body Clock Disruption

  • The body’s circadian rhythm influences all physiological systems, including nerve function, hormone release, and temperature. MS lesions can dysregulate these rhythms, making symptoms worse at night [21:19].
  • “There’s probably a few things that come into it... some things being worse, and things feeling worse.” — Dr. Laura Edwards [21:19]

• Sleep Disorders & Environment

  • People with MS are more prone to sleep disorders and might be more often awake to notice symptoms [21:19].
  • Factors include positioning in bed, lack of movement, time since last medication dose, and being more focused on discomfort in a quiet/dark environment.

• Medication Timing

  • The gap between doses (particularly if dosing is morning/lunch/evening) can mean less symptom control overnight [21:19].

• Psychological Factors

  • Anxiety and depression are both prevalent and worsen sleep—plus, at night, “the only person in your head is you” [11:42, 21:19].

4. Specific Night-Time Symptom Explanations & Remedies

A. Spasms and Stiffness

• Why worse at night: Lack of movement, suppressed repositioning during sleep phases, medication running out, body temperature dips [25:33].
• Remedies:
  • Evening stretching and progressive relaxation.
  • Prone (tummy) lying for short periods to stretch.
  • Adjust sleeping position/pillows for support.

“In certain phases of sleep, our brain actually deliberately paralyzes us so that we don’t act out our dreams... So the natural repositioning we do is suppressed in sleep.” — Dr. Laura Edwards [25:33]

B. Temperature Sensitivity

• Symptoms: Freezing or burning sensations, often in the feet [29:53].
• Why: MS disrupts nerve signals (neuropathic), as well as "autonomic dysregulation"—the body’s internal thermostat [29:53].
• Remedies:
  • Regulate bedding/room temperature; try cooling pads, loose clothing, or cooling vests.
  • Be cautious about hypothermia, especially in advanced MS.
  • Review medications with professionals, as some can alter temperature sensitivity.

C. Night Sweats

• Not classically linked to MS but reported anecdotally. Rule out other causes (thyroid, infection, etc.) if new or worsening [33:01].
• Seek assessment if accompanied by systemic symptoms (like weight loss).

D. Nocturia (Night-time Urination)

• Problem: Common, especially with MS-induced bladder dysfunction [35:37].
• Remedies:
  • Avoid caffeine/alcohol before bed; moderate fluid intake, aiming for pale yellow urine.
  • “Bladder training” (double voiding) before bed.
  • Seek assessment for causes (bladder can be overactive or underactive—treated differently) via bladder scans.

“Paradoxically, not drinking can actually make you need to pee more. Strong concentrated urine is more irritating to the bladder.” — Dr. Laura Edwards [35:58]

E. Restless Leg Syndrome (RLS)

• Extremely common in MS (up to two-thirds). Can be worsened by some medications or deficiencies (iron, kidney issues) [45:36].
• Remedies:
  • Check iron/kidney status.
  • Identify med triggers (antihistamines, statins, etc.).
  • Gentle stretching, relaxation techniques before bed.
  • Weighted blankets—works for some, not all (should not exceed 10% of body weight); try before you buy.
  • Trial/practice with OT/physio if possible.

F. Protecting Sleep Quality

• Vicious Cycle: Poor sleep worsens fatigue, pain, mood, and physical function [51:36].
• Sleep Hygiene Tips:
  • Same bedtime/wake-up each day, even on weekends.
  • Create a wind-down routine (relaxation, lavender spray, meditation).
  • Avoid blue light/screens and stimulants before bed.
  • Prioritize and protect sleep despite family or social expectations.

“I had to set my bedtimes being the same and get up every morning at the same time... I had to talk to my kids and my husband... but it really improved my sleep.” — Helena [54:26]

• Seek Specialist Help:
  • If severe or unexplained, request referral to sleep clinic (can test for sleep apnea or other disorders).
  • Explore CBT-I (Cognitive Behavioral Therapy for Insomnia)—proven effective for many.

“Don’t turn to things like alcohol and sedative medications... talk to your GP, your neurologist, your rehabilitationist. There are alternatives and support out there.” — Dr. Laura Edwards [59:39]

Notable Quotes & Memorable Moments

• “We often hear people complain about sleep and certainly working in the world of MS, you do hear an awful lot of people saying, ‘how do I get a good night’s sleep?’” — Helena [07:27]
• “Employment seemed to be a significant factor… all this is to be published, so these are very initial findings.” — Dr. Rod Middleton [11:42]
• "Some medications can affect the way your body handles temperature." — Dr. Laura Edwards [43:59]
• “You don’t have to suffer in silence. There is help out there.” — Dr. Laura Edwards [34:49, 59:39]
• “Sleep is crucial. I really like the idea of protecting your sleep—it's a form of self-preservation.” — Dr. Laura Edwards [51:36]
• “The more nervous you get, the more you need to wee… it’s exhausting, isn’t it?” — Helena [40:32]

Timestamps for Key Segments

• 00:05 – Helena introduces the episode and its importance
• 02:41 – Dr. Rod Middleton: Overview of the UK MS Register and sleep data
• 06:11 – The sleep experience questionnaire and what it measures
• 11:42 – Early data findings: What influences poor sleep in MS
• 14:15 – Scale of the problem: Three-quarters report bad sleep
• 21:19 – Dr. Laura Edwards on why symptoms worsen at night
• 25:33 – Causes of spasms and stiffness at night
• 29:53 – Cold/burning sensations and temperature dysregulation
• 33:01 – Night sweats: Is it an MS symptom?
• 35:37 – Nocturia: Managing nighttime urination
• 45:36 – Restless legs: Why so common, how to manage
• 51:36 – The vicious cycle: How sleep worsens or helps daytime symptoms
• 54:26 – Helena’s experience with CBT for sleep
• 59:39 – When to seek further help and what not to do

Practical Tips & Take-Home Messages

• Prioritize Sleep: As important as any other MS management strategy.
• Tailor Solutions: There isn’t a “one size fits all”—what works for one may not work for another.
• Ask for Help: Never write off a new or worsening symptom as “just MS”—discuss with your MS team or GP.
• Try Simple Changes First: Sleep hygiene, temperature regulation, stretching—these often help.
• Track Your Symptoms: Use tools like the MS Register to contribute to research and help track your personal patterns.

Resources Mentioned

• MS Trust resources: www.mstrust.org.uk – See "S" for Sleep, "N" for Nocturia, "S" for Spasms
• UK MS Register: ukmsregister.org
• CBT for Insomnia: Ask for GP referral or MS nurse advice
• Sleep Clinics: Can investigate for sleep apnea and other sleep disorders

Final Thoughts

This episode provides a thorough, empathetic, and practical dive into the complex challenge of night-time MS symptoms and their impact on sleep. Both experts and the MS community agree: sleep issues are overwhelmingly common, have many causes, and deserve more attention from clinicians and researchers. A blend of self-care, medical advice, and persistence in seeking help is vital for managing these difficult but addressable symptoms.

For questions or support:
Call the MS Trust Helpline at 0800 032 3839 (Mon-Fri, 10am-4pm).
Follow the MS Trust on social platforms for updates and community conversation.