What do MS spasticity and muscle spasms feel like?

Spasticity and spasms are not always straightforward to explain, so we asked our social media community to describe their experiences. In doing so, we wanted to bring these symptoms to life, while emphasising how they vary from person to person. As you read the responses below, try to keep in mind that spasticity and spasms can affect any part of your body, may be painful for some, and range in severity.

We often hear people with MS describe spasticity as stiffness, heaviness or tightness in muscles. Your responses echoed this, but added an extra level of insight, that makes this much more real. Although more comments talked about spasticity in legs, one also mentioned it affected other parts of their body too. 

The tightness known medically as increased muscle tone was described by one person as "just a bit tight or it can be really like your body's turning to stone and it feels really sore. It's sore because your muscles are so tight and they're so tight for however long it lasts." 

Someone else picked up on the ‘stone’ parallel, while introducing a feeling of heaviness: "My legs feel so heavy like they are filled with cement. Most of the time the muscles feel like rocks." 

Another likened it to: "Metal rods in my legs that are heavy and not flexible."

We received many more comments about spasms, from "mild, regular muscle spasms" to more challenging symptoms. Here are some examples shared with us:

"I suffer daily with spasms. I’ll be sitting in my recliner chair and all of a sudden my leg just starts to move, kick out and becomes painful. Then both legs will start and my arms will also start ...it gets so bad, I start to panic. I can’t walk and usually ask to be taken out of my recliner and back to my wheelchair."

We often hear people describe their spasms as sudden jerky movements, with one describing the feeling that "my muscles are trying to break my bones with intermittent jerks" and another saying, "I get really bad restless legs and my legs jerk involuntarily. I have to keep my foot jiggling... to stop the jerking happening." 

Some spasms cause your body to contort, with someone experiencing "random jumping and twisting of my lower leg" and never knowing "when it might happen and I kick someone." 

And it's this suddenness that can really catch you and others out: "I'll be laying in bed with my boyfriend cuddling up... and I suddenly have a full body spasm for no reason! Boyfriend has learnt that I get them when I'm tired - not out of spoons tired - just long day! But it's still annoying when laying together, and suddenly you have a spasm attack!! It jolts you both!"

Some found their spasms affected arms and hands: "I experience leg and arm spasms mostly at night when I am in bed... where my hand and foot will literally clench up so tight and so painful." 

One described this clenching as "claw hands,", while another said, "my hand locks and my fingers stick in strange positions (uncomfortable but not that painful), other times it affects the arm and hand, then after the initial pain of the muscles going into spasm it takes a few days for the 'dead arm' pain to go away."

Several people were left with this lingering pain once their spasms subsided: "I get them through my arms, legs and shoulders, they spasm every 15-20 seconds. Nothing helps. I will try to relax my muscles and joints but it does not help. I can't walk it off and it can last hours. It can be so bad I'm left feeling like my body has a mind of its own. And when it does finally stop my muscles are sore through the next day." 

Another said, "I get spasms in my legs mostly, they go rigid and for a few seconds I can’t move them at all. Sometimes they cramp really badly and my muscles feel sore for the rest of the day. I also get spasms in my right arm, but this isn’t as bad as my legs and doesn’t happen as frequently."

Not all spasms are painful, but from the responses we received, pain was a common thread. Sometimes it can be very intense as this comment details: "I can feel the spasms coming on, I have developed some coping mechanisms and exercises to help stop them developing into full blown spasms (I used to scuba dive and there are some good techniques on how to deal with cramps etc when underwater). But if it goes into full blown spasm, I can’t imagine much worse pain, it’s crippling and debilitating, feeling sick with the pain, there’s nothing that I can do other than wait for it to pass."

While reading through your comments, it was interesting to see other feelings highlighted. 

Some expressed a mix of emotions, from wanting to cry, to embarrassment, awkwardness, even humour. Others expressed a determination to stay positive as a way of coping with their symptoms. 

A few said it can be difficult for others with no experience of these symptoms to comprehend what they're are going through. And while this is understandable, it may help to share information like this to so more people are aware of how these symptoms can feel.

Speak to your MS team about getting assessed if you're experiencing spasticity or spasms. You can also find more information about these complex symptoms here as well as suggestions for while you wait for your assessment.

For existing symptoms, you may find our managing spasticity and spasms page helpful. This includes information on self management strategies, physical therapies and medication, and what to do should your symptom management plan need reviewing.

To all those who shared your insights, thank you. We couldn't use them all here, but we do appreciate you taking the time to help shape our content and give voice to your lived experiences. It really helps to make our information more relatable to others with MS. 

We are also growing our spasticity and spasm information, so do make use of our resources listed below.

• Spasticity and spasms
• Managing spasticity and spasms
• Download or order our free book on Managing spasticity and spasms
• Learn what may be triggering your spasticity and spasms
• Peer support: join our MS Trust Facebook community (public group)
• Peer support: join our Advanced MS Care and Support Facebook community (private group)