That document reconfirms others in that rTMS can offer some benefit but isn’t available outside one centre in Liverpool and even that may close once research funding ends.
There is no doubt cpsp is a bit of a poor relation but stroke itself is. How has the MS charity been able to fund/purchase? large buildings+car parks and offer heavily discounted services ?
Are they really much more heavily funded ?
I don’t know about the MS societies funding as they bought a lot of cars?
Hi @Nigelglos
What you have linked to is actually an advert for this longer video that sets out the answers to 8 questions including things like does cold affect spasticity, what can you do about central post stroke pain or complex regional pain syndrome - and is itself a signpost to further videos in her collection.
I don’t think she says anything that you don’t already know but this is a useful overview for many folk who will have studied less 
The comments section contains lots of links to her other videos and alongside the EBRSR link is another one of her goto resources This time for ways of describing pain to other people, it is at https://bpspsychub.onlinelibrary.wiley.com/doi/full/10.1111/bjhp.12432 .
Ciao
Simon
It’s only a sample size of one …
The abstract is encouraging
a lot of reading to cover the rest of it
The conclusion shouldn’t be surprising since the reason that mirror therapy gained attraction was in pain management
Thank you for the information, tightness is steadily increasing despite movement, exercises, etc. I really wish something more was being done.
I find it a bit difficult to tell the different sensations between tightness and post stroke pain.
What I am finding of late is
Have you been checked to see if you have had any increase in spasticity?
It’s difficult to make your brain think this way but some of the difficulties are sensations. They are not always real but the brain misinterpreting things.
So, yes I have been checked and if it’s not velocity dependent, it’s considered “tone”. I have mostly tone and I have to use a sit down elliptical machine practically daily to slow the progression, but on most days the tight squeezing is way up here on the pain scale. No medications helped this either, so I’m trying to believe there may be some future breakthroughs in the treatment of thalamic stroke damage.
Can you expand on that for me please :-)?
I no longer get physiotherapy from somebody who has read some books and wears a blue set of cotton scrubs - When I did they insisted that my upper limb problems were caused by tendon shortening - I dispute that because I think they are caused by muscle contractions but I was never clear on the difference between a spasticity and tone - The two words seemed to be used interchangeably
From reading above you seem to suggest that one of them particularly refers to resistance triggered by speed of movement?
Your understanding shared would be welcome
Is velocity dependant another way of describing clonus ? It’s possible to generate that limb shaking for example by grabbing the foot and moving it upwards quickly. If you have clonus, it will bounce for a little bit. The same movement but slowly doesn’t generate the bounce.
Hypertonia refers to high level of muscle tone. Muscle tone means the level of tension in the muscles when at rest.
Our brains might be ok at sending one signal for example for them to contract but not the release signal.
Presumably, you are either pulling a muscle which is stiff or a muscle which is already in a state of being pulled and doesn’t have much travel left.
If I was to think about cold and stress, both of these cause you to tense up. Again pulling on muscles which are already in a state of being pulled and presumably causing pain/discomfort.
If a physio asks me to relax my legs,I might think it but im not sure that message gets through.
Hi @Nigelglos
Thanks for your thoughts
I do find it all rather impenetrable. If I use movement of my arm and a fixed object like a table or door frame I can cause my fingers to open & flex backwards without their appearing to be any tension in them.
in fact even if I hold my wrist with the left hand the right hand, with a struggle - will respond to requests for the fingers to move .
If I try and move my fingers without anything as above then I can move them towards my palm but I can’t then move them back again except first thing in the morning when they appear to be more bidable.
The whole exploration of capability is further complicated in the position of the rest of my arm effects the degree of movement ability in the fingers. First I think a rise to the below professional opinion of tendon shortening that I believed to be far too simplistic
All has been particularly frustrating for me as I haven’t been able - when I had one - to have a conversation with a physiotherapist where their explanation didn’t ride rough shot over my lived experience with a “I’m right I’ve read the book” point of view.
I’ve been able to devise my own exercise program with efficacy for most of my arm.
The wrist and fingers are proving the most intractable.
My current regime is to stretch passively with my left hand the fingers and wrist of my right hand for repeats of 10 to 20 seconds, then extend the stretch between 1 and 10% for another 10 or 20 seconds
then try and hold that using my own muscles.
When the fingers have curled in placing a resistance such as my other hand against them and attempting to open them thus building up the muscles that make the movement that I hope is now not restricted by short tendons
Another reason for disputing the short tendons is that the lack of movement is across the whole range not just the marginal element at the end of the range that I think it is lack of creating controls plus lack of muscle strength
I’ve had maybe a hint of progress in some fingers not in others and nothing conclusive overall.
This is my current experimental approach given that I have had no contact with a professional who can discuss in any convincing manner
Still interested in more description of terminology such as tone and spasticity if the subtle element of distinction is described it may give me a hint at the self design of therapies
Ciao
Simon
By chance this popped up on you tube. Only a short one, covers tone as well. Sounds like just the job for explaining ?
The point you make about first thing in the morning is interesting. If it was an out and out physical item, you might expect similar circumstances at any time ?
Not really comparable but when I wake, my face rarely has cpsp. Start eating some cereal and that initial movement seems to fire it up.
The you tube link also mentions procedural memory.
Hello, thank you for reading this. I am not sure of the difference, only what they tell me is that rigidity or tone remains consistent throughout movement (?) while spasticity reacts to range of motion. I wish I could explain it better. For me it’s hell as I have the feeling of being in stiff and squeezed throughout the affected side, despite being able to move my arm and leg. There might be some spasticity in the arm I’m told, but everything else is central post stroke pain and it’s evil.
That’s helpful to me
Thank you
Ciao
Simon
You are not alone in struggling to understand the difference.
How do you distinguish a feeling of stiffness/heavy limb/cramp like sensation which seems to be one part of cpsp as opposed to a feeling of stiffness generated from something else ? Genuine stiffness should mean someone else can’t easily move that limb ? If it’s ok to move but feels stiff to you, that’s likely to be cpsp ?
Pins and needles it is not. That’s not really any part of it, I have had pins and needles many times and it’s not like this. Quite gentle by comparison. This is more of an ongoing prickling burning sensation for me with a whole load of other things to add on top.
And yes, cpsp is evil, really unpleasant and I have no idea if it will become more tolerable or continue it’s path from April 22 and keep increasing in severity. If it does, what sort of life will that be…Cannot find anything on line to suggest how this will turn out.
I wonder why …?
This small study from 2015 shows reported benefit of rTMS.
If only we had someone who might be able to fight the case with the NHS to get this rolled out …
What you mean an advocacy group that hears the voice of those it uses as the justification for fundraising?
It would have to have an input channel - let’s set about trying to find it.
Got one we don’t know about let’s engage with it and if it hasn’t let’s point that out.
Ciao
Simon
This is at least something.