“When we meet real tragedy in life, we can react in two ways – either by losing hope and falling into self-destructive habits, or by using the challenge to find our inner strength.” – Dalai Lama
With my MS, I not only battle the sickness of the disease but also it’s side effects. My latest side effect is sore legs.
Why is that, you might ask? Well, its because I have clonus.
Clonus is a series of involuntary, rhythmic muscular contractions and relaxations. Unlike small, spontaneous twitches, clonus causes large motions that are usually initiated by a reflex. It is a sign of certain neurological conditions, particularly associated with upper motor neuron lesions involving descending motor pathways, and in many cases, accompanied by spasticity.
So when you look up clonus in the dictionary you see a picture of me.
It’s weird because, despite not walking, the clonus causes my legs to continuously move. When my foot is placed in a certain position, my leg jumps around like a jackhammer. I hate the vibrations. They jerk me all over the place until I find the right position that will not set it off.
When it’s happening, it’s like there is something in my body that’s alive and moving around. My legs uncontrollably bounce up and down and by the end of the day they are usually sore and tender.
Having it isn’t the end of the world; it just bothers the heck out of me.
Do you suffer from clonus or have at least heard of it?
If so, how do you deal with it?
Nicole, I have battled the same problems for years and now I take Mirapex three times a day. If I miss one dose my legs start dancing, but if I am diligent my legs remain quiet.
Mitch, I’ll ask about that one. Thanks
I used to suffer with these symptoms and I stopped taking Voltorol ,of which I was so glad because the NHS withdrew this drug a few weeks later ,my worst symptom my thigh muscle was solid for 24 hrs jumping ,people could actually see it twitching .Good luck x
Thanks for the proper term! My legs usually start twitching when I am resting and laying down- I thought it was a form of RLS – now I know!
Yep, clonus found me. I just didn’t know it had a name. Now, I do, thanks to you.
The correct varietal of medical marijuana can put the kibosh on that. But it needs to be the correct varietal… the right one makes the pain and spasticity go away, the wrong one doesn’t. Sometimes someone can point you in the right direction, otherwise the only route is experimentation. And what are the side effects of even the wrong varietal? Listening to music, watching cartoons, laughter, having a good time eating. I don’t have any problems with that. I can even suggest good cartoons!
If I get on the ball of my feet, there goes the jumping!!! I just reposition my foot and it goes away!! Just aggravating !!!!
I have this problem, but it has been greatly reduced by specific stretches. I would consult a physio about these – I to use a theraband for some of the stretches. You might need a person to assist you.
That movement drives me nuts!! I often think of it as a popcorn machine! As Laurie said, with all that exercise, wouldn’t you think we’d all be as skinny as rails!!
Nicole,
I also have clonus from time to time. Have not been able to successfully manage it with meds or exercise, as it happens unpredictably. I wish I had a great suggestion for you, but I have been encouraged to stretch and exercise my legs regularly. I am not walking yet either, so this is a definite challenge, but it has reduced the amount of clonus episodes I have experienced. I have experienced some relief also from some energy work that I can do seated. Good luck on this journey….Thanks for writing about this.
I did not know this was the medical name for it, I thought it was restless leg syndrome, It is very annoying and worrisome. But the spasms is worse when it feel like my leg is being contorted all the way down to my toes. I try bracing myself or can you believe it, I actually try to stiffen to stop it. It makes it worse.
I have been quite fortunate not to have to fight with clonus too. I think when my MS first hit I had some instances of it, but as I’ve regained control over more of my body it has went away. I just hope I continue to regain my strength for the time being. Honestly, I am not ready for some of the issues that may rest in my future.
I also have these issues and did not know it had a name as well. Thank you for sharing. I’m going to research this a little more.
I have this same problem. i had no idea that it had a name. I thought it was a nervous habit.
Though I’m not the Dalai Lama’s biggest fan, I love the quote. I have horrible clonus. It’s hard to find a position where my legs aren’t trying to bounce me right out of the wheelchair. Sometimes I let it go on for half an hour or so, wondering if I’m burning calories with so much activity. But I never lose weight.
Your comment about losing weight made me smile. I needed that. I was kind of down today. Thanks.