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Journey to the Pain management programme

Ruthy

It does seem silly to mix pains. The course I attended back in 2017 was OK as most of the others had fibromyalgia, which has a similar pain pattern (if I can call it that).
The one I’m due to start in a couple of weeks is online, which I’m unsure about. However, maybe if they waited, like you said, for several cpsp sufferers, across the country, to need the course and do it online for a group with the same pain.
You’re right. It makes no sense.

Nige

I have managed to get a new physio appointment after dropping out, all be it in the middle of next month, with the note ending that they will look at what else the pain management programme can offer. So maybe some positives

Ruthy

Nige Be interesting to know what the physio says 🤔😊

Nige

The 2 discussions with the physio were quite interesting but in the end I have concluded they are more suitable for time based pain ie those that increase in proportion to the amount of activity. I don’t think my version of cpsp fits into this category as there are simply to many variables.
The only item that fits is standing time but again, due to variability, it does really fit either.

The idea is you are looking at a triangle shape. You have a base line of background feeling. Some way above this you have a pain threshold where the pain will stop your activity.
Between the two, is the area where background pain is tolerable and hasn’t reached the point where it stops movement.
The idea is logical, what activity can you do and for how long and stay below a point where the pain does not escalate. The idea is you scale back and don’t hit the triggers for pain escalation.
This perhaps might be with a physical injury, you can walk for 10 mins, knee pain is tolerable but get to 12 mins and you can barely walk. The idea might be you only ever do 8 mins walking activity before resting.

Problem with this CPSP is that it might be one step, it might be 50, might be 100. It doesn’t have any reliable data I could rely on to prevent escalation.

Nige

If the pain is a protection, perhaps an unknown nerve signal response and the brain thinks, let’s go cautious, let’s get away from this sensation until we know what it is. Right here is your pain, I want action………
Secondly, if the activity is repeatable despite the intense pain, perhaps this is enough to convince the brain that the danger isn’t a threat. Walking for example may well get easier after a bit but if you pause, that allows the brain to ramp up pain again.
This is contrary to a physical injury model that the pain clinic were trying to adopt

Simon

Nige contrary to a physical injury model that the pain clinic were trying to adopt

Seems very troubling that ‘professionals’ try to impose a physical mechanism on a neurologically caused phenomenon.
MS and phantom limb communities must surely have a better starting point than that!

We need cross disciplinary attention to these topics with guidance from lived experience because there appear to be so many examples where common sense would suggest that if they are not applicable it would be easy to locate descriptions of why . That we cannot find recognition or dismissal of would seem to me to be evidence that these avenues had not been explored rather than that they were understood and easily explained.

2¢

Nige

Simon my guess here would be that physios are trained on the physical and as a result, we get treated on that basis.
Whether there is a physical element or not.

It needs neuro in front of the role name I suspect for the help to be optimal. Presumably the ratio of physios to someone who might be able to really help is lots and lots and a bit more to one.

Someone in this role might be interesting. What can they actually see.
https://www.healthcareers.nhs.uk/explore-roles/doctors/roles-doctors/medicine/clinical-neurophysiology

Nige

My time with the pain management program has come to an end for now.
My overall assessment would be that it is much more suitable for physical injury rather than nerve pain. I don’t think the knowledge is there to provide suggestions that are relevant for me.

Avoid triggers, yeh but life, restricted as it is gets in the way. You can’t stay in bed 24/7 without other health issues.

The last item I tried on the pacing front proved futile. The idea sounded good and interesting. It was to work out a level of activity that could be performed without the pain becoming intolerable. Then create a margin so you operated with a safety range.
Don’t overdo any activity if it triggers pain that completely disables or takes hours to recover from. So why didn’t this work ?

CPSP comes with too many variables that trigger pain or unpleasant sensations. Much less is written about the latter. It isn’t solely activity A as the trigger but a cool wind, a cold carpet, stress etc.
It is not inflammation in a joint that gradually builds with the activity. Where stopping the activity breaks the pain build up.
my version seems progressive so any benchmark becomes irrelevant.
pain may be intolerable without the activity in question.

So I concluded this was another example where chronic pain management is only suitable for physical injury and not brain injury driven.

I gave it a decent shot. It might be that individuals with strokes in different areas of the brain might find some benefit. Almost all my sensations are impacted negatively by the damage to the hub which is the Thalamus.

Maybe CPSP should be CPSSI. Where the SI is sensation issues so that it encompasses numbness (partial and full), dizziness, balance problems, various sensitivity problems (light, sound,touch), being blasted/completely overloaded by sensation surge etc.

Simon

Nige
Ive nothing useful to contribute. You impress me everything by how much more clarity of analytical thought you evidence than any pain professionals I’ve seen/ heard etc
I can only say that there HAVE TO BE some folk with better knowledge & thinking than so far is evident.

Ciao
Simon

Andrew

Simon I have nothing concrete to offer either. However, it does seem to me that health care professionals cannot tell us what to do except to advise on possible courses of action. Those professionals who post very helpful videos on youtube always have the caveat where we need to check behaviours, medications, foodstuffs and the like with healthcare professionals. Perhaps they too pass the buck?

Those in the trade will often say that while “something” works for “A”, the same “something” won’t necessarily work for “B”. Unfortuately that seems to be true, as far as I can tell.

As you know, I suffer from tremors and this means that I cannot play the violin. Youtube is slightly negative whenever an opinion is expressed or just silent. The neurologist I have just consulted via the doctor has sort-off fobbed me off with a chemical trial using propanolol, and this is without even seeing me! So I have to decide what to do about this. The old therapists, good as they were, are now placed by my case in an area well beyond their expertise. My fear is that the young ones are too immature to advise correctly, while the old ones were trained in the days when things were different, the brain fixed for all time, and are therefore bound to mere chemistry or surgical interventions as possible solutions.

Hopefully we’ll get the answers that you and I need via the community of folk with similar life-changing experience.

Simon

Andrew
You do reflect thoughts that I share : the newer to join the professions don’t have the experience and the old ones have experience that is lacking correct orientation/ insights due to the prevailing fashions when they were learning.

That’s why I think we have to get eloquent survivors and interested professionals into community because it will take both to evolve the state of the art in a way that is enabled and practical

I think if the pain community could be similarly gee’d up progress could be made there. With pain the problem is that there is a large emphasis as Nigel highlights on pain related to the correct operation of nerves alerting the body to damage elsewhere and that is blocking clear line of sight to focus on false activation of the neurology.

I have to admit to having both the distractions with the summer and my garden and a weariness from being 5 years post stroke and very little meaningful assistance and meaningful non-cooperation from organisations who collect money on the claim that they are helping us. They are maintaining a status quo That is the best that could be done half a century ago not the best that can be done now and into the future 🙁

Ciao
Simon

Nige

Simon The medical world are really quite good at advertising advances. The media picks it up and it’s comforting to all that medicine is advancing. It does seems though that the front line maybe are not that different to medical staff from 50 years ago. No one can “feel” pain. How would you describe a nettle sting to someone who has never had one ? It doesn’t half put the medics at a disadvantage. I might have said it before but I think for cpsp (for my version at least) pins and needles it is not. Maybe that is a by product “Doc, it’s vaguely like pins and needles but it’s really quite different”. Chances are many people have had pins and needles and the tag sticks.

There is a real hierarchy in the medical world. I can imagine being massively frustrated if I worked in that world. I would forever be wanting to push on. Perhaps knowledge is almost seen as a threat to someone’s position?My brother told me the story how he was discussing his epilepsy with really senior staff in the epilepsy world and he felt he knew more then they did. I think he completely lost faith in them when one of the epilepsy meds paralysed him from the waist down and the next one meant he couldn’t open his eyes as he was so light sensitive, effectively went blind till he gave it up. Maybe the senior staff live off one success, their own or one of their team came up with. If it’s the latter, like some team leaders, drill down a bit and you realise they don’t know the detail.

Simon

Nige
Agree it all and it’s very depressing
🙁

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