Question

[KatrynaH]

I'm new to this group. I joined due to my friend has psp and is in the process of passing. It's been 9 days since she has been I call it sleeping... But my question is the pain she's in. Even with a pain pump.. Morphine, lorazepam she still screams out in pain. Why?

[imli]

So sorry to hear it.

People have told

Me that morphine and narcotics don't work as well in PSP. Not sure what causes the pain- my Dad could not speak at the end and screamed out in pain the last 2 days, and he was awake

And taking lots of meds

For pain. I'd be curious to hear from anyone else if PSP causes pain and what type.

[abirke in reply to imli]

Bs pain sensor is diminished. this has its own bad consequence as he does not realize the damage of his body.

[imli in reply to abirke]

Can you explain? I am sorry I didn't understand what you meant?

[abirke]

Well his pain is not as there as someone without PSP. Bruce has always been stoic , but things that have happened to him after onset seem to show that his brain receptors do not respond as well as they used to. Whether it's the cortex (immediate response)or the thalamus (chronic response) B is able to handle pain. I believe this is another reason why he not able to get out of harms way.

This is an aside sort of but as B was walking in from the garage, he banked on the 2d step leading into the house, stopped and was about to put his glasses on. He did not think of the ensuing problem of falling backward down the stairs nor prevent himself from pain about to be literally pounded into his head. He just thought of his glasses......not the risk of doing this at the threshold of the door. This, I know , does not have any thing to do with feeling pain and that this is frontal lobe's responsibility, which is I suppose has little to do with the body saying ouch; but the fact remains that B does not necessarily keep him self out of harms way. So Is the cortex diminished a bit I suppose. But B so far has not experienced physical pain as you or I would. He burns himself and its not till later when I discover it he tells me! And, the dr said this would happen...Pain diminishment. This does not mean that he won't start experiencing a chronic pain. the thalamus or perhaps the limbic yelping out in emotional cries.

Everyone is different. Infact, I hear him now talking in his sleep....

The other day He asked dr for higher dosage of sleep meds. So far, they have not been very useful...hmm

As I reread this, I feel like I have probably confused you even more....sorry not a dr. It may be that B feels pain normally, but how he responds to it, or it may that he does not feel it as much either way the sent msg. is not being processed nor delivered where it needs to go and this is from the PSP disorder,,,,

Confusingly yours,

AVB

[jzygirl]

Just a quick reply Brian often has a cramp like movement and shouts out and when asked are you in pain he says no. So it is either a pain that doesn't regester as pain or its an automatic yelp. Janexx

[Amilazy]

Hi Margaret gets chronic pain from her left arm which is now almost fully bent across her chest. This pain according to the Physio is caused by not using the muscles. I use paracetamol usually first thing morning and before bed which seems to relax her but not the arm. I use lorazepam sparingly only when M is thrashing about and anxious and unable to settle. Orimorph is a back up to paracetamol if still in pain and cannot give a further paracetamol due to time factor (paracetamol doses should not be given closer than 6 hrs). This a rare occurrence at present but getting more frequent

When M was mobile, I noticed she could fall or hit her head without any immediate pain, she said she knew it must hurt as she could hear and feel the bump, but got no response this she said would come in later as a severe aching. As Abirke says, our GP said it was a brain function not getting the messages, like a toddler who when starting to walk will sometimes fall and not cry as the pain pathways have not developed or in PSP no longer there. I think a lot of M's so called night pain is the brain mishandling the signals from the body as the supernucleus disappears and new pathways can no longer be made.

Your friends pain may be the brain's lack of other response relief. It may be worth asking her GP to refer her to a palliative care consultant at her local hospital or her asking her local hospice as they may be able to assist with more powerful pain relief.

Best wishes Tim

[heinz57]

thanks Tim , you have just explained why my mum say's it doesn't hurt when she falls, she has lumps and cuts which look painful but will have pain when she goes to bed. also pain in her left arm

thanks Gaynor