Breaking It Down – A Multiple Sclerosis Podcast

Episode: Understanding and Managing Spasticity and Spasms in MS

Date: May 19, 2025
Hosts: Nick (A), Helena (B)
Expert Guest: Wendy Hendry, Specialist Physiotherapist (C)

Overview

This episode dives deep into the often misunderstood symptoms of spasticity and spasms in people living with multiple sclerosis (MS). The hosts start by discussing the prevalence and variability of these symptoms within the MS community, before bringing in physiotherapist Wendy Hendry to clarify what spasticity and spasms are, what causes them, how they can be managed, and the role personalized physiotherapy can play. Real-life experiences from the MS community are shared to bring these symptoms to life.

What Are Spasticity and Spasms?

[00:31–04:47]

• Definition & Prevalence: At least two thirds of people with MS experience some degree of spasticity. Symptoms can range from mild to severe and are highly individualized.
• Difficulty with Terminology: Many people—even within the community—struggle to distinguish between 'spasticity' and 'spasms' and to find language that describes their symptoms accurately.
  • Helena: "I've often struggled to understand spasticity over the years and I think I'm not alone in this." [01:27]

Community Descriptions

• Spasticity Feels Like:
  • "Just a bit tight or it can be really like your body's turning to stone... really sore because your muscles are so tight." – Adam [02:54]
  • "My legs feel so heavy, like they're filled with cement. Most of the time the muscles feel like rocks." [03:51]
  • "Metal rods in my legs that are heavy and not flexible." [04:30]
• Spasms Feel Like:
  • "I'll be sitting in my recliner chair and all of a sudden my leg just starts to move, kick out and become painful... I can't walk and usually ask to be taken out of my recliner and straight back to my wheelchair." [04:54]
  • "My muscles are trying to break my bones with intermittent jerks." [05:37]
  • "Leg and arm spasm mostly at night... my hand and foot will literally clench up so tight." [06:30]
  • "Claw hands" and hands locking in strange, stiff positions. [06:54]

Expert Insights with Wendy Hendry

[07:49–68:46]

Wendy’s Background

• Nearly 40 years as an MS specialist physiotherapist
• Research background in standing frame use for MS patients
• Member of the 2014 NICE guidelines committee and long-term MS Trust ambassador [08:02]

What Do Spasticity and Spasms Feel Like?

• Muscle stiffness and spasms often happen together but can also occur as individual symptoms.
• People describe a "heaviness" or feeling of "walking through treacle," or walking "robotically."
• Spasms: “Very jerky movement can take you completely by surprise... as if your muscles are just doing things under their own control rather than your control.” [11:24]
• Gradual or sudden onset—often recognized only in hindsight.

Where & How Do They Happen?

• Spasticity/spasms can affect any muscle but are most common in legs/trunk.
• They often occur in “patterns” depending on nerve damage location; muscles involved in keeping the leg straight (e.g., quadriceps) are frequently affected. [13:45]

Episode Duration & Mechanisms

• Once nerve damage occurs, spasticity tends to be chronic, but severity and day-to-day fluctuations are common.
• Wendy uses the “volume switch” analogy:
  • Normally, the nervous system raises and lowers muscle tone according to activity.
  • “That sort of volume switch just sort of gets stuck on.” [15:55]

Spasticity Triggers

• Pain (of any kind—including that which you might not feel directly)
• Bladder/bowel issues (especially constipation)
• Temperature changes (cold increases spasms; slight warmth can decrease them)
• Menstruation, anxiety, infections, posture, and speed of movement
  • “Anxiety will make it much worse...the faster we move, the more we put effort in, that can also trigger spasms.” [20:41]
• Wendy strongly recommends a “spasticity and spasm diary” to link symptoms with potential triggers and medication timing. [27:13]

Quote:

“...in medicine we sort of deal with what we see, which is the downstream problem, without necessarily going upstream and seeing what caused that in the first place.”
— Wendy Hendry [27:18]

Managing Spasticity and Spasms

[28:04–68:46]

Should Spasticity Always Be Treated?

• Not necessarily. Mild spasticity can help with movement and circulation.
  • “Sometimes a bit of extra tone can be so helpful. It can help you walk, it can help you transfer...” [28:38]

Physiotherapy: Strategies & Approaches

• Assessment: Full history, diary analysis, physical examination (including movement, muscle stretch, tendon reflexes) [30:08]
• Personalized Management: Focus on teaching self-management (not just handing out exercises).
• Medication Coordination:
  • Close monitoring of drugs such as Baclofen, Gabapentin, Tizanidine, Dantrolene.
  • Medication should be tailored and reviewed—“very rarely see someone on the correct dose” [33:22–36:31]
    • Story Highlight: Reducing a patient’s Gabapentin restored independence and continence. [36:38]
  • Timing and dose are critical; medication should be adapted, not taken robotically.

Physical Activity & Exercise

• Any exercise is good: Resistance/strength/aerobic exercise won’t worsen spasticity and generally improves strength and function.
• Sitting is “the new smoking”: Prolonged inactivity worsens symptoms through deconditioning.
• Tailoring is key: What helps one person may trigger problems for another. Listen to your body, find activities you enjoy, and involve everyday movements.
  • Gardening, standing, stretching, and yoga are recommended.
• Standing frames and assisted devices can help severely disabled individuals stand, improve strength, and support breathing, digestion, and overall function. [51:18]
• Posture is crucial: Small adjustments can make a big difference to symptoms. E.g., using a cushion between knees if knees are knocking together in a wheelchair. [53:00]
  • “Your pelvis is your key, your keystone of your whole body. If that's out of alignment...everything becomes out of alignment.” [54:00]

Unique Insights on Movement Triggers

• Head and neck position often directly influence spasms:
  • “...if you want your legs to go straight, lift your head up...if you want to bend...bend the head and curve the shoulders round.” [48:46]
  • Knowing and using these triggers can give people more control.

Quote:

“Our biggest enemy...is sitting for long periods. Because it's very difficult to know how much of muscle weakness that you see in people with Ms. is due to the primary condition itself...and how much is due to deconditioning.”
— Wendy Hendry [43:50]

Quote:

“To have MS, or to help people manage MS, you have to be a detective, you have to be a Sherlock, and think...what triggered that?”
— Wendy Hendry [65:52]

Managing Hand and Arm Symptoms

• Same principles as legs: assessment, diaries, and working with occupational therapists for aids and adaptations.
• Stretching, keeping joints mobile and maintaining fine tasks (knitting, puzzles) are recommended.
  • “Sometimes staying the same is important, really important.” [59:16]
• Use creative ways (e.g., jam jars filled with activity slips) to integrate movement into daily life.

Practicalities & Access to Physiotherapy

[67:02–68:24]

• Referral is usually through GP or MS specialist nurse; ideally, see a neurological physiotherapist.
• Some MS therapy centres offer self-referral options.

Key Takeaways

• Spasticity and spasms in MS are common but uniquely experienced.
• Symptoms can cause confusion; descriptive language from the community helps identify them.
• Triggers are wide-ranging: from pain and posture to emotional factors and the environment.
• Self-management—supported by a specialist—is essential, and medication regimens must be personalized and regularly reviewed.
• Exercise is vital, but should be enjoyable, integrated into daily life, and adapted to ability.
• Standing frames and posture aids improve quality of life even for those with severe mobility issues.
• Persistence, detective work, and collaboration with healthcare professionals lead to best outcomes.

Notable Quotes and Moments

• "My legs feel so heavy, like they're filled with cement. Most of the time, the muscles feel like rocks." — MS community member [03:51]
• "It's all about management...the most important thing that a physio needs to do is help someone to learn how to manage their condition on a sort of 24/7 basis." — Wendy Hendry [30:08]
• "I very rarely see somebody who is on the correct dose of this medication." — Wendy Hendry [33:22]
• “[Sometimes] just by changing the time of the medication can have a huge impact on that person’s life.” — Wendy Hendry [35:10]
• "Sometimes staying the same is important, really important." — Wendy Hendry [59:16]
• "To have MS, or to help people manage MS, you have to be a detective, you have to be a Sherlock..." — Wendy Hendry [65:52]

Final Reflections

[70:00–74:23]

• Both hosts reflect on how the episode shifted their understanding of MS symptoms and management, especially around triggers and the subtleties of symptom recognition.
• Encouragement for listeners to consult healthcare professionals or access MS Trust resources if they suspect spasticity or spasms.
  • “Maybe talk to your MS nurse or GP...is this something I should worry about? Should I see a physio?” — Helena [72:48]

Further Resources

• MS Trust website: Comprehensive information on symptoms, management, and physiotherapy
• MS Trust Facebook Group: Community experiences and advice
• Helpline: 0800-03-23839 (Mon–Fri, 10am–4pm)
• Social media: Links in show notes

For anyone living with MS, this episode is a must-listen for demystifying spasticity and spasms, learning how to track and manage them, and recognizing the value of individualized care.