Have any of you experienced this? I’ll be just waking up in bed, very relaxed and calm, in one position. All I have to do is move my hand, or my foot, or my arm just a teeny bit and my whole right side goes into a strong shaky spasm for about 5 seconds. This unfortunately sets the “Tone” for the day and the day’s spasticity. I tried taking one of the major muscle relaxers (useless) at about 4 am. to curtail the spasms and it is no use. I ordered some of the best CBD products on the internet and maybe this will help? My neurologist and GP just seem to throw drugs at me, and my physical therapists are all about stretching. This has been going on for the past 6 months.
My new area of spasm is now my neck and it remains spastic (tight) all day. I am very fortunate in that I can move all my affected areas but with much tightness.
I’m a bit worried because the morning spasms are starting to hurt.
@Outlander really sorry to hear you’re having this issue. Must be awful for you.
I can’t help with it but hope the CBD oil might offer some relief for you. X
Hi
I’m not sure I can be much help. I know exactly what you mean. If I stretch out my leg then my right arm joins in and my hand and my eye
maybe discussion will identify commonalities useful for both of us? Also hypotheses about exercise?
Whether my hand clenches or flexes open is somewhat under my control. What my arm does is pretty much now under my control I think - it’s hard to remember now I’m trying to verbalize it.
I haven’t yet consciously worked out which spasm goes which way for my hand. I can’t always trigger them on demand and I can’t always avoid triggering. They do seem to be limited (least discretionary) in the first half an hour after waking up and the time between going to bed and falling asleep. So they seem to be when my legs not weight bearing. Sometimes in the evening when I’m sitting for example watching TV I can trigger it too.
When the spasm hits and I have it 10 or 15 in the morning I’m always conscious that I’m on the edge of getting cramp so put a lot of effort into telling the spasm to calm down. So far I’ve been able to avoid that cramping with a high degree of success
One thing that I see as a positive is it shows me my muscles and nerves and brain are talking to each other and that full range of movement is there I just have to learn how to make it a discretionary movement. With a great deal of ‘¿effort? concentration¿’ I can normally get one of the discretionary movements if I ignore the others like I could get my index finger to extend or curl once or twice and then I have to wait 10 minutes before I do it again and it takes a lot of ‘effort’ again.
Flexing my hand open is the hardest thing for me. Two fingers persist in resisting my attempts to tell them to extend normally. I think only another abi survivor but truly understand how debilitating too non-functional fingers would be .
Having said it only happens in the morning & in the evening there are other occasions when I can trigger it but I’m not able to describe them.
I do seem to be luckier than you in the sense that they don’t then prejudice the whole day. Although I do have a lot of tight muscles in neck shoulder and around my shoulder blades on both sides. Almost anything could be the cause of that from statins posture inappropriate muscle activation etc ad nauseam.
Part of the improvement I think has been from the growing strength and discretionary use I can put my arm to. Since the day of my stroke to today some 30 months I have been attempting to make all my limbs do stuff they wouldn’t do the day week month before each new today .
for the first year that was rise above my navel and where I am now is being able to grab the bath towel and dry myself with it, comb my hair, turn a tap more than 30°, let go of something!- I never realised how heavy a bathtowel was till I wasn’t strong enough to pick one up right-handed! That discovery was after a lot of work being able to lift the arm to the point where I could grab the towel off the towel rail and lot of work getting the fingers closed. When I could first extend my arm & ‘grab’ the towel I wasn’t strong enough to lift it and my arm would shake - now it trembles. concurrent with my progress for arm movement & strength the effect of the morning spasms - which have remained - seems to be reducing for the arm 
- it’s hard to put into words because it’s not black and white, not universal, not entirely consistent.
It is progress I think
Outlander–I know how difficult spasms are. I used to get them every night in my legs as I tried to go to sleep. CBD oil under the tongue was the only thing that stopped it. Check with your doctor and research on the net about dosages. I gradually needed it fewer nights each week, and after 5 years, they have pretty much gone away. I need the CBD occasionally, maybe once every 3 months. Aside from the spasms, I would get bad calf and foot cramps. I have added magnesium glycinate supplement to my diet (200mg, and that really helped. Hope you fine relief soon. 
Jeanne
@Mrs5K Thanks so much
@SimonInEdinburgh Interesting symptoms; I wonder how you “tell” your spasms to calm down?
Mind over muscle? I find it frustrating how everything is connected. When I do upper body work, say arm curls with resistance bands, my right leg will protest and get very numb, tingly, and a bit weaker.
If I’m on my exercise bike my neck will seize up and cramp. I wish there was a magic exercise that worked all the muscles at once so I could concentrate on it. My hand trembles also when I turn it side-to side. I have a cervical stenosis that I’m getting therapy for and this is all a part of the evil stew.
@axnr911 Jeanne: I ordered very highly rated Gummies and will also order the oil. Thanks for your input and support.
We are in similar spots here. I do have some cramping in my foot and toes that both makes me angry and want to cry at the same time. Thankfully that is not consistent.
I also have trembling very similar to Parkinson’s disease when I am overwhelmed…by noise, movement around me, lights, too much thinking activity at the same time. PT is working with me to try to do more than one thing at the same time. Seems like things have a way of seeming worse before they get better…whether pain, focusing, fixing one thing while making a mess of another,…
I try to keep in mind that all of our body parts affect the other parts and that this day, week, month, is still better than yesterday, last week, or last month, if I am able to do more.
Hello Derek,
Nice paintings, by the way.
Here are some watercolours I did
Sorry about the spasms… I’m in the same boat as you, as far as my leg is concerned. I do take CBD, which IMO, does wonders for improving the connection between mind and nerves / muscles. My problems will present themselves at 6 am… it’s that time which tells me I’m going to have a good day / or bad day. Today is a good day for me. Magnesium helps with muscles, of course, and I use a Deep Blue rub by DoTerra. After a lunch nap it sometimes improves enough for me to walk a few lengths if I am lucky.
Not knowing how it will progress is scary, but a good friend and radiologist just txt me how important it is for me to stay “upbeat” … that’s what will get us through. I’ve had few things I couldn’t solve or improve in life if I put my mind to it. My spasms are the one problem that I have not solved in life… but the possibilities are there if we look for them, and keep an open mind. I don’t know how, but I believe we can improve our condition. Keep us in the loop, and realise you are not alone with this problem…
hang in there, ciao, Roland
@DeAnn : foot cramps can be so painful. Thanks for your input and support.
@pando Roland, so…like me you are an artist and musician. The two things I was really good at are now so much weaker as far as skills.
Your painting is fantastic. I love watercolor. It is a challenging medium.
I got my CBD and tried it last night under the tongue. It kept me awake ALL night. What is that all about?
and…I still got the spasms. Frustrating.
Wow!
Seems somewhat an under-statement
Derek,
Hi again
my profession is violin performer, and now teacher (which I still do), but as far as playing my violin goes, that’s a sore topic. Yes, CBD once kept me awake all night… head spinning… I took 14 sprays, because I thought none was coming out… oh boy was it working! I didn’t call an ambulance because I knew my silly mistake.
Anyway, what kept you awake all night?
CBD oil only makes you dizzy if it has THC in it.
You may not have that component.
Yes, the stroke affected my dominant arm / so my creative flow is on hold, too.
Frustrating for us, hang in, Roland
too kind, gents, but thx
I mean “Normal”…sorry
…outstanding work, Derek
to be robbed of such talent is cruel.
But what we will gain from our journey is huge…
ciao, Roland
ps. I’m going to compile a list of good things to do on the days when spasms hit. It’s for my book, but I’ll echo it here…
I’ve noticed the connection, stroke side, between muscles… as if all stroke muscles are connected and part of a sub-group. The brain cannot differentiate easily between these muscles. I try to activate some and keep others independent and uninvolved. Exercise more control all the time. It’s no use doing exercise when all of your body becomes one tense unit. Got to keep some parts unlocked to fight tension and stiffness. When my muscles are stiff, my eye socket tightens and my eye waters to lower its pressure. Odd.
ciao, Roland
I was listening to a clip on the Bobath technique, Simon. It said leaning on a muscle or bearing weight was one way of reducing spasticity. I’m experimenting with this idea.
ciao, Roland
@pando so Roland, you mean you use isolation movements instead of compound movements: like say,
curls for biceps with mind muscle connection, sit to stand squats for legs, resistance bands in rowing for back, etc.?
I try also to get in some aerobics with stationary bike for 20 min.
To work my hands, I paint as well as I can and practice piano (clumsy). Even when I sit at the piano and play for a while, my back will spasm.
Derek hi,
my idea is to be aware of one part of your body working (tension) while another enjoys the resulting looseness which comes as a direct consequence. When playing violin there is always some part of the body which becomes free while another part is under tension. It’s good balance to feel these 2 opposite sensations ( or imagine them )
hope that makes sense
ciao, Roland
thank you so much ; I’m also impressed with outlander’s work I hope he gets back to it one day
@Outlander @pando wow i love the paintings. I have a little jealousy for anyone who can paint. A talent that passed me by. My artistic talent came out in music instead 