Hello everyone, new to the forum although I have dipped my toe in the water by replying to a couple of posts bear with me I’m still feeling my way round. My query is concerning muscle spasms. My experience of them are feeling a rush of electricity running through an arm or leg and having no control of whichever limb while the spasm lasts, I have had this sensation a number of times over the years. My worst experience was four years ago when I had my last major relapse, i was having spasms taking over my full body I had no control while they lasted, my knees would come up to my chest, arms would extend upwards I scratched my face drawing blood at one time with the force of the spasm, I found I was laying rigid as every time I moved I triggered another spasm! I was prescribed Baclofen and Diazipam which took the spasms away after a week of taking them. I no longer take Diazipam but continue to use the Baclofen as I am afraid the spasms will reoccur and to be honest they terrified me. I could hear and see while in spasm but found breathing difficult I felt I had to force air in and out. Are everyone’s spasms like this and am I just being a wimp by allowing them to scare me so much? No relapses since but I have been getting progressively worse so we (ms nurse and I) are now saying Secondary progressive. Sorry if I’ve gone on a but here goes pressing the post button…
Hi Jan, look at my post a few down the list today “new sympton”. I’m also SPMS and I am inclined to agree with you that this is a progression. Yours sound alot more severe than mine and I will speak to my MS nurse about them because having no control over parts or all of your body is worrying. Yesterday I spent most of the day in bed as I was only able to deal with the spasms by being in bed (safer). I got up for an hour and th spasms became intolerable so I went back to bed. Taking today an hour at a time, but at least I’ve got up! Linda x
I’ve replied to your thread Linda hope you get stabilised soon. If my spasms are different or milder than yours try no to worry they might not worsen. We all seem to have variations of the same thing. Good for you getting up if only for short spells. Jan
Hi there, I have SPMS and for last 2 years big spasms, normally just as I wake up 5am ish. Scary and uncontrollable. It sometimes feel like I’m going to snap my spine. About a year ago I hurt my shoulder so bad it’s still not recovered but I found pulling both arms in wrists against my chest helps me not to injure myself. As I wake, still not in control of my movements I breath in and it initiates a huge spasm in my stomach, back that is vey troubling and painful. I’m looking for advice on how to control this. I now set aan alarm for 2 am and get up and stretch because if I sleep soundly and for longer the spasms are more intense and uncontrollable. Baclofen has no noticeable effect.
So my only advice is to try and assume a position where you can have some control if you’re lucky enough to feel it coming on. Best wishes to you x