The last few weeks I have noticed that my left, affected, arm is being a bit mischievous and has started to hang in a position similar to when I had my stroke 26 months ago. It seems to be worse first thing in a morning but can happen at anytime throughout the day. I’m not sure if it is caused by my frozen shoulder and my arm just feels more comfortable in that position or whether it is possibly stroke related. I can move it out of that position easy enough if I make a conscious effort to do so but it tends to creep back again when it thinks I’m not looking.
Has anyone else experienced this? What have you done about it? Is it just a case of telling it to behave and eventually it’ll stop again? I want to stop it becoming a big problem if I can.
On a different note I often, at night time, get what i can only describe as an electric shock sensation in my head. Last night it happened as I was settling down for the night but at the same time as the sensation travelled across my head the fingers on my left hand all uncurled. It was very weird.
I had what was described as handbag arm for a long time,almost pulling me along. Then a couple of months ago, 22 months after a stroke, arm started to hang.
Now it’s gone back to handbag arm.
Maybe it’s linked to how conscious you are of that side at any point in time ?
@Nigelglos its possible it could be linked to how conscious I am of it. When i first had my stroke the hospital physio regularly shouted as she went past “straighten your arm” which I’m sure did me a massive favour at the time even if I did grumble.
It’s just strange how it has started to hold in that position again. Similar to what you’re experiencing by the sounds of it.
Hi Ann @Mrs5K
Mine always sits with the elbow crooked with the ‘hand around my navel’ unless I consciously decide to straighten it out.
I think it’s the default state of semi-activation of muscles that aren’t relevant - that definitely results from the stroke in my case.
My fingers curl (and uncurl with effort) at different times for different reasons that aren’t connected to my conscious desires.
It’s definitely worse for factors that trigger challenges to my day and my emotional well-being eg the stress that results when my posts get flagged and then removed as @EmeraldEyes recently highlighted with her How minor stressors can floor you post stroke post
It’s quite plausible that your frozen shoulder pain is affecting your capacity by interaction with other aspects. Perhaps work has been stressful for you recently? Even if slightly it will be drawing on reduced reserves that the shoulder may also draw upon?
Or some other sources like troubles sleeping?. Also the contributory cause could be cold? Fatigue ? Other sources of stress?
Any of these give you more to do between the ears (that reduces the number of spoons The Spoon Theory you’ve got) available & then autonomic responses govern posture and muscle disposition?
I’ve been to my GP over the last 2|3 months who has taken bloods and amended medication (BP etc) and we are discussing SSRI medication for anxiety and stress to help too - you raise, implicitly the prospect that this may help my hand - I hope so
I read (for your other topic), that experience of electric shock feelings may be related to the development of Central Post Stroke Pain syndrome - I have my fingers truly crossed that you don’t develop that.
It is true strange things happen to us post stroke - there doesn’t seem to be a horizon that marks the start or end of these
It could be @Bobbi i’m on a waiting list to see a physio about my frozen shoulder so i’ll ask.at the same time. In the meantime i’ll just keep telling it off hope you’re well x
Thanks Simon, i have been through a bit of stress…well in the run up to Christmas at least. My mums accident, work, a TIA etc. Maybe that is part of the cause. It isn’t likely to be the TIA causing it as that affected my other side. I was running on empty for a while before Christmas so there were definitely less spoons available.
I do use my arm less because of my frozen shoulder so that may be feeding into it. I do use my arm though as trying to stop it getting worse.
I’ve never had SSRI meds but my best friend takes them & it helps her greatly so I wouldn’t rule them out if they can help you.
I’ve been getting the electric shock feelings for a while. I mentioned them to the stroke consultant & he looked at me like I’d gone mad…maybe I have i really hope it isn’t central post stroke pain developing. I’ve read everyone’s posts on here & i really feel for anyone who has it. It does give me an area to research though.
Thanks for your input. Plenty of food for thought.
Hi
That’s quite a catalogue of potential stress sources so I would guess that there is potential there, it’s also cold now etc etc
I’m very wary of SSRIs - definitely a prejudice¡!
The GP this morning said let’s not try them now that we’re still trying to sort out your blood pressure for stress - so it’s comforting to hear your friend who finds them helpful
It beggars belief that consultants don’t recognise obvious keywords. I can find it if you need me to there is research paper that reports multiple studies of CPSP and lists by prevalence the words people use to describe their sensations such as hot cold numb electric vibrating etc etc - It also reports typical time scales as between 4 months and 24 with exceptional cases being from 1 month and after 24 months with no upper limit But the exceptional are rare on rare - fingers crossed You’re fine and it’s just combination of other factors
Hope you get some more relief. I definitely find using mine as much as I can and asking myself constantly the question “how does the good arm work and is that the way the bad arm is currently emulating” gives me the source of exercises or things to practise day to day
A few of the anti depressant medicines (supposedly) help with cpsp so it might be one solution aids both if you are unlucky enough to develop it.
There is a direct link for me with cold and stress and the pain increasing. I think both cause the body to tense up.
It’s still early days on working towards my mirror box therapy. I have spent a fair bit of time just imagining events, sport mainly, all of which were pre stroke and pain free. Will it fool my brain,only time will tell.
Hopefully if you get your BP under control the rest will follow although one feeds into the other. A viscous circle.
Thank you for the offer re research paper. I’ve managed to find a few docs/papers which I’ll read in slower time. I can only manage short paras still especially at the end of a busy week. Some weekend reading. At least I will have something I can mention to the consultant then.
J keep using my arm but sometimes it is just too painful. I’m definitely in the use it or lose it camp.
Hope the mirror box therapy reaps rewards for you. I struggle to understand how it works but people report good things about it so there’s every reason to be hopeful.
I think it comes in part from the sporting world. If you are an athlete at the start of the 100 metres, if you imagine it beforehand, you perform better than if you don’t. Not sure why.
I think for ourselves it’s part of the brain reprogramming. Imagining is enough to kick start that rewiring.
If you imagine or see in the case of the mirror that your left arm as an example moves freely in no pain, perhaps it will. This will take weeks but plenty of time to see if it works.
They’re commonly called brain zaps @Mrs5K and really there’s a whole load of suspected causes such as going on or coming off certain medications, stress, anxiety, hunger, lack of sleep, not well, and so on. In other words, even the doctors don’t really know.
I’ve experienced them from time to time over many years, so not stroke related for me I wouldn’t have thought. More so as I’ve gotten older, but I suppose that would be with having a family, sleepless nights when kids were babies, the usual life stressors.
I did have a bout of zaps before Christmas when I had covid too. Google brain zaps
As for the handbag arm, a slight “urge” for it to sneak into that position has never quite left me. So it can sneak back for me too, most noticeable is when climbing/coming down stairs. But then I think many without strokes also do that anyway. But I get the sensation/inclination more so when tired.
I wonder, with your work, are you on a laptop/keyboard a lot. That’s another trigger for me.
May try a few push up off the wall and when your arm straightens, hold and maintain that pushing tension to a count of 20/30 then release.
And google frozen shoulder rehab exercises too, then go to images and see many simple examples of exercises, stretches and manipulations you can do at home after work, to help relieve it.
My therapist is working on my weak shoulder. This seams to be my issue for having less power to my wrist and hand. She advised exercises to keep it more loose.
@Nigelglos that all makes sense. I often imagine I’m lifting my leg when I do my exercises. My leg still won’t lift but i live in hope that eventually my brain will work it out.
I have always struggled with mirror images. For some reason my brain can’t work them out. Can’t blame my stroke for that one…it’s always been the case
@EmeraldEyes thank you. There is a lot of good things there.
I’ve looked up brain zaps and everything seems to focus on it being related to coming off anti depressants. I’ve never taken them & i’ve not stopped any other meds. These have definitely only been present since my stroke but maybe I am just getting older.
I didn’t think about my arm possibly being related to it being tired. I do use a keyboard a lot for work so it’s very possible it gets tired. I forget I can’t do what I used to. I do have a program on my computer that forces me to take a break every 50 minutes but maybe that isn’t enough. Work have provided me with software that will type for me so I can perhaps use that more & test the theory.
I had a try of the wall push ups this morning but frozen shoulder says no. i had already looked up frozen shoulder exercises & have been doing them for a few months. I didn’t want to wait for the physio…by the time I see them i might not need them. once i’ve improved enough though i shall try the wall push ups again…maybe the frozen shoulder will then say yes
One mistake we easily make, a throwback from our youth, is to not warm up our muscles first. We tend to go straight into action and that can easily turn into a painful mistake in winter with a cold muscle. So, in particularly with your frozen shoulder, warm it up and soften the muscle with a little light massage before you go into action, before you try the wall push up.
Another one is to stand at arms length way from the back of your chair with your hand on the back.
Push down on the back of the chair, and while maintaining that tension, start to bend down at the hips pushing your butt out behind you.
Go as far as your arm and the pain will allow and hold for a count of 10.
And remember a little pain is good thing while you’re do this…no pain no gain. A lot of pain becomes strain and not so good so ease up.
I’m not an expert in this but I’ve learnt a lot over many years from physio’s, osteopaths, gym trainers etc. because of my own issues. The one they all do before going to work on a troublesome muscle is warm it up first!
Actually Emerald Eyes pictures are good, my therapist told me to try those in the shower with warm water concentrating on my shoulder. We’ve just been starting them. Thanks for the good wishes.
Thank you i’ll give it a try. I agree no pain no gain. Frozen shoulder pain is agony though
I was making ok progress with my shoulder then i slipped going out the front door landing on my shoulder. Let’s just say the air was blue for a while & i’m starting again with my exercises. That’ll teach me to go outside
once i’ve improved enough though i shall try the wall push ups again…maybe the frozen shoulder will then say yes 
Thanks for the good wishes.