Anyone got any thoughts on what might be happening here? It’s long - I can’t seem to do short these days - but detail can help provide context, I hope. It’s also helpful (for me😆) writing it all down.
I’m 2yrs 2mths post stroke and my left arm has been getting progressively heavier over the last 6mths or so. My left leg is also affected to a lesser degree. Both limbs have also increased in numbness which adds to the heavy feeling. The shoulder feels tight but has pretty much full range of motion so maybe the tightness is sensation related although my OT doesn’t think so. I’d been seeing a private PT since the beginning of the year but because of the arm issues, she felt an OT would be more helpful at this stage. I’ve now had 3 sessions with the OT. Her observation is that the nervous system on my stroke side never shuts down - ie it never relaxes. I’ve noticed that I appear to feel emotion in the stroke arm, which tightens up periodically although I’m beginning to think it may be happening more in response to becoming mentally tired eg when chatting with a friend for more than 2 to 3 hours or if something has challenged me mentally or I become excitable🤣 The OT has asked me to halt all post stroke exercises until the end of the year and promised me I won’t regress. Of course, if I want to exercise, I can, but the idea is to not add stress by feeling I have to. So I’m continuing with the things I enjoy. I was having regular massages with an osteopath for a few months but with no benefits and often feeling worse afterwards. Her assessment was that my nervous system needed calming down and suggested I stop the massages and tried something like reflexology, which I did. I found it very relaxing and booked another session which I subsequently cancelled due to a family tragedy and I’ve not rebooked to date ( maybe I should🤔).
I haven’t had any anxiety issues since the stroke but pre stroke, life had been very stressful for many years so I guess my body spends a lot of time in fight or flight mode as I seem to be unable to relax unless I actually consciously do so. And I can only do that if I’m aware that I’m tense to begin with. The tenseness also causes issues with tightness in my neck and back on the affected side. My OT says I need to find an occupational balance’ between productivity, self-care and leisure. Most of my adult life has been centred around productivity with little time or focus on self-care and leisure. So under the guidance of the OT, I’ve been focusing on trying to get a balance. Pre stroke, I was very active much of the time but a lot of it was fuelled by stress and although I haven’t got the same stress anymore, I can still act as though I have so it’s about unlearning bad habits/patterns of behaviour. I find all this quite fascinating but in practice, quite hard to do. One of my exercises is music therapy. This is how it’s done: 1. Sit in armchair. 2.put pillow/cushions on lap. 3. Make sure I can feel contact with feet on the floor, bottom on seat, back against chair, head back against chair, arms on arm rests. 4. Listen to just one element of chosen song for the full length of the song. 5. Deep breath at the end. The object of all this is to increase sensory input. My brain has already grown the new pathways to my arm, which is about 95% functional, despite the heavy feeling, numbness tightness, with pins and needles predominately in the hand. This time last year, the pins and needles had dwindled to something less bothersome but then started increasing in line with tightness in the forearm and now the upper arm. Although this stroke arm feels nothing like my unaffected arm, it still functions almost as well. Sensation wise, the hand feels like I’m wearing a moderately thick glove. And there is also the sensation of dental anaesthesia in the face from my left eye to mouth which is increased at the moment but historically changes from mild to moderate from time to time.
I suspect this phase of recovery is going to be long and maybe arduous. It’s getting me down a bit because it feels like a set back. I’ve not really experienced a real set back until now for which I’m grateful. I’ve had times over the last few months where I’m walking like I used to, for short distances, and the strides feel more fluid and normal. A few weeks ago, I had 4 or 5 much better days on the trot and had that now familiar feeling (for me) that I’m going to be ok. However, the past week has been my worst in terms of pain and discomfort since the stroke and I don’t know why or whether there is something I’m doing that triggers it. It’s coincided with the last OT session so is it possible my nervous system is being irritated in some way other than stress 
Now I’m limping and can feel my good leg compensating. On a positive front, I’m also becoming more aware of when I’m tensed up, which seems to be most of the time. There are times, when I’m feeling rough, that I push myself to exercise more and to do more generally, although it won’t be anything like what I could achieve pre stroke. Now I’m wondering why I do that and whether I’m subconsciously perceiving feeling rough with being stressed and using activity as a coping mechanism Should I rest or be active at those times? Am I overthinking and complicating everything? If you’ve managed to read this far, I thank you. And if you have -
Anyone got any thoughts/advice or can relate to any of this?
Trace
positive vibes 
The PT’s were constantly reminding me to look at where it was, which was always flopped and hanging over the side of the chair. These days, I have the OT reminding me to relax that shoulder, because it’s always hiked up where I’m unaware that I’m tense 
Anyway, my brain started to make the connection and with lots of sensory reeducation, I’d got to the point where I was able to use a knife and fork by the time I was discharged after 2mths in rehab. The arm has remained numb but has also gained considerable positive and normal sensation, so I can feel things like light touch, pressure, pin pricks etc. I’m sure the numbness contributes to the feeling of heaviness because the arm feels swollen, although it isn’t, of course! I’ve also noticed over the last few months that the numbness appears to intensify when I’ve been out walking for a while and now I’m thinking that is most likely because I’m getting tired. So the perception of numbness increasing is most likely flawed. In reality, I’m probably becoming more aware of what my body is feeling?
. Does it wake you up or has your wife told you? That arm can’t be dead because your brain must be communicating with it when you’re asleep. I wonder if it’s also connected to dreaming? Fascinating.
.
I hope it settles for you quickly and we look forward to having you back making mischief very soon.