I agree with all of the above. I am fatigued, but I am not tired. Doing a little but often is the way forward. Good luck 
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You’ve addressed and worded so many of the issues I’m having so this post has been a great read for me
Do u also find if fr example your working on your wrist, your full side will go tight at same time rather than just the area your working on?
Its so difficult to know where to go or who to talk to now my 6month period is up with the nhs
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@nico1986
The only part of me that goes tight is the arm/hand. I’m sorry your whole side is going tight - that must be very uncomfortable. Does it take long to loosen up/ relax a bit?
I’ve been having an interesting couple of weeks and I don’t know if any of what I’m going to write will resonate with you, but hopefully it will. What I’ve found on this stroke journey, is that recovery for most of us is unlikely to be easy or straightforward. Things can change from day to day, week to week, month to month. Learn to be in tune with your body and remember that we can still become unwell with something that is totally unrelated to stroke. In my head, I try to keep the stroke stuff separate from everything else. My unaffected side feels healthy and well. My stroke side has been morphing and changing from day 1 and it may or may not continue to do that until the day I die. We all have to live with that uncertainty, unfortunately.
When I saw my OT 3 weeks ago, she asked me to try some relaxation using music - I mentioned this in another post. What I found was that it increased my awareness of feeling tense and I realised that I’m feeling that way most of the time. So at least, now, I’m constantly checking myself and consciously relaxing my body, basically by allowing myself to go heavy, if that makes sense. The tenseness can return very quickly, though, but not always. It seems to depend on what I’m doing or thinking about at the time. I generally sleep well so must be relaxed to do that, I guess. Just to point out here that my OT keeps reminding me that the stroke is highlighting something that’s been present in my life for years!!
Anyway. I saw the OT again on Tuesday. We talked through what has been going on. I mentioned that the hand tightness increases when the hand is tired eg after half an hour of playing piano or knitting and that the arm heaviness is always 10/10 in the evening but around 7/10 the rest of the time. The arm seems to feel tighter if I’m tense and tightness contributes to the heaviness. Being tense contributes to tiredness and the arm feels heavier when I’m tired. It’s all connected. The parathesia in the hand/arm isn’t a nerve issue, rather the brain trying to process what the limb is feeling. So, it’s all sensory. I’m now back to doing focused sensory reeducation which I’ll persist with for a good few months in the hope there’ll be some improvement. I think it might also help if I can be more intentional whenever using the arm/hand instead of using it without thinking. There was some consolation in being told that what I’m experiencing isn’t at all uncommon and that I’m on track with the timeline for it. Of course, no-one can predict a final outcome but the act of being proactive and engaging with something that could help is worthwhile even if it only acts as a distraction.
Let us know how you’re getting on when you can.
Trace
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Since replying I’ve been to see a private neurophysio who was very good in explaining what was happening and then asked her to explain it in an email so was written down
Will post as found it interesting albeit saying she couldn’t help
Hi
Yes, I agree. Lots to take in!
You are right. It’s all about signals, but you do not have a problem with your motor pathways (Signals from the brain going to your muscles to make them activate), which is why your strength is not really affected. Your problem is with the sensory pathways. These are signals going in the opposite direction, from your skin, muscles, ligaments, joints etc to your brain to give it info about where your limb is in space and how the limb is working. These are different pathways, which follow a different route through your brain stem than the motor (movement) pathways.
For example, your brain is only really receiving patchy information about where your right hand is in space and what it is doing in terms of grading muscle activity. This is why it is so awkward for you to use your hand and arm. Therefore, it is not really the actual motor power or strength that is impaired, but the ability to harness and control that power through feel. Not just how external objects feel to your hand (like the tennis ball in your pocket), but how it feels on the inside to contract/ relax / grade your muscles). Without this internal and external sensory information, it is very difficult and awkward to move your arm/ hand accurately and effectively on your own body and also around the environment.
Even letting your arm settle and allowing it to relax and be ‘soft’ requires your brain to sense the feeling of ‘let go’. This in itself is difficult and means your arm is stiff and unnatural at times, especially when you are stressed.
The good news is, you have made brilliant improvements in a relatively short time. The only way you will continue with this improvement is to bombard your brain with the right sensory messages (especially through your hand) and practice, practice, practice dexterity skills, functional tasks of daily living and bi -manual (2 handed) tasks (? Window cleaning). This may be frustrating, as I know your right hand is not always very compliant, but the more you practice, the more awareness you will give your brain about your hand and how to use/ control it.
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Thank you for posting that @Nico1986. Very helpful explanation and having it in writing means we can refer to it time and again when we get those times of frustration, forgetting what’s going on!
I’ve been getting localised pain in the forearm with twisting movements for about 2 weeks, making it difficult to drive. My OT came over yesterday. Checked the muscles and told me they feel very good. She told me there’s nothing wrong with my arm , it’s all sensory.
This is the bit that resonates with me 
My shoulder is never relaxed unless I consciously ‘let go’. My OT says this is why my shoulder is so tight, even though I have good range of motion. So I’m trying to become more aware of relaxing the shoulder especially when I’m sitting down, and also correcting posture. (Have always liked to slouch 
). I try to remember to swing my arms when walking which helps.
I’m keeping a detailed diary now to document the arm problems and parathesia / numbness. I also get ‘warm’ patches on the arm and leg which seem to be nerve related. I’ll be ready and armed with all that info to give to the neurologist when my appointment comes through.
Understanding the issues helps with managing them but I don’t like feeling uncomfortable much. I doubt you do, either.
Trace
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@Nico1986 Like anything after stroke, its practice, practice, practice. That’s where a lot of people fail in life, they do not want to put in the hard work and effort. Good luck
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