Pain management - how much …

[Harshacceptance]

dad has late stage CBD and is 81. He is still very much there, his memory and understanding of what is going on is not affected. Everything else is in a terrible decline.

He has in the past few months had a lot of neuropathic pain - shoulders, arms, legs. I only realised to what extent before Xmas when an advanced nurse practitioner attended for a recurrent UTI - she moved his arm, I could see the pain and she then asked where his pain was at out of 10 ….7

it’s taken a lot to get him to take neuropathic pain meds (8 paracetamol a day plus codine) doesn’t touch it. He’s turned down meds previously because he doesn’t want to have an altered state mentally (I think he clings onto this bit if life) however has now started gabapentin.

We’re sat at the CHC assessment last week and the nurse and social worker both commented on dad being stoic. He doesn’t complain at all yet when asked his pain was at 6 and it is constant.

I find that very upsetting as you need to push him to get the “real” how is he, he doesn’t want to trouble anyone.I hate that he suffers so much.

He has one dose in the morning and one in the evening which has helped him get a better nights sleep however he has constant pain in the day and we know this will get worse with disease progression. His concern which has been present for a long time is he doesn’t want to be drugged out of his eyeballs (not sure how best to explain that).

What are people’s experiences with drugs like Gabapentin as I do feel he needs something at lunchtime vs being in this constant pain - do you find people are still "with it" even if they have a dose in the day?

He is also now on an SSRI to help with his mental health which is really bad as well

[Bergenser]

Dear Harshacceptance

I'm sorry to hear that your dad has so much pain.

My husband didn't have much pain from the PSP - we would ask for a number 1-5 and he would often show us zero 👌.

When he had exercised - or fallen - we would use non-medical methods like ice packs, hot water bottles, massage e.g. with magnesium oil - and mostly that would be enough.

He used cocodamol after a fracture but weaned himself off it as soon as he could. I understood his desire to keep a clear head when the disease itself made him disoriented.

Only in the final few weeks, he indicated persistent pain. The hospital doctors would prescribe paracetamol and eventually a transdermal patch (changed weekly). We were told he could still have additional pain relief (e.g. morphine) if the pain broke through, but the patch definitely took the edge off it. The patch appeared to work without making him less alert.

I hope your dad can be kept comfortable so he can enjoy his days and sleep at night.

Best wishes

🌻🫂

[Harshacceptance in reply to Bergenser]

thanks for the response - the transdermal patch I had not thought about. I will certainly bring that one up.

It's such a horrid situation as he can do nothing else but exist transferred from bed to chair, he has become very withdrawn,

Thanks for the tip.

🙏

[GeorgeMMXVI in reply to Harshacceptance]

Transdermal patches definitely eased my Mums pain. The dosage has recently been increased in line with pain.

[Harshacceptance in reply to GeorgeMMXVI]

Thank you 🙏

[PineEater]

Harshacceptance, Hi

... (8 paracetamol a day plus codine)...8 PCMs a day! Too much, it's side effects are well known. Plus codeine ! Can your dad cough very well ? I mean is his cough reflex OK? Does he suffer from swallowing problems ? Findings suggest that sensorimotor cough dysfunction is prevalent in PSP and cough motor deficits are worse in PSP. These are the deficits that are major contributors to pathogenesis of pneumonia in people with PSP. Best wishes and regards to you and your dad.

[PineEater in reply to PineEater]

Codeine is a cough suppressant

[Harshacceptance in reply to PineEater]

Hi

Thanks for the response

He has very advanced stages of CBD so his progressive dysphagia puts him at high risk of aspiration.

He’s been on the paracetamol / codeine which is an opioid if I am not mistaken for quite some time now to relieve his pain, however because it’s now neuralgic he’s additionally on Gabapentin, I’m not sure the dosage is correct given the pain he has in the day. We’re very much at the stage of managing his pain as his disease is so progressed. It’s about helping him to be pain free as much as possible.

[Ahuntatregency]

hi, I take Gabapentin 3 times a day for neuropathic pain. my understanding of Gabapentin is that it is usually prescribed three times a day. An additional dose per day may be helpful.

[Harshacceptance in reply to Ahuntatregency]

That’s great to know thank you. The palliative consultant only provided a pax for twice a day, I’m going to see if they can increase it

[PineEater in reply to Ahuntatregency]

AhuntatregencyHi, I just wonder is your speech ok as many people report adverse effects of Gabapentin on speech. Best wishes to your good self.

[Ahuntatregency in reply to PineEater]

Hello, sorry, not sure. I had some speech problems before so hadnt put these down to the gabapentin

[Harshacceptance in reply to PineEater]

My dad’s speech had already declined significantly before he started gabapentin. There has been no change

[Kelmisty]

Mum has PSP and CBD, complains of pain in her dystonia arm all the time, until recently she’s been on buprenorphine patches for years at 5 mg, they upped them recently to 10mg but she’s developed a intolerance on her skin to them, skin is blistering. They are considering what else to change too. On top of this it’s paracetamol 2 x 4 times a day, sinemet and oramorph when needed.

Nothing really stops her pain though as it’s neurological and difficult to stop.

[Harshacceptance]

oh wow ... thats horrible. thank you for sharing as it sounds like we are in a similar position.

[Kelmisty in reply to Harshacceptance]

We are I think, it’s so hard to know what to do next. I hate it. X

[Tindb]

Since 2017 my wife (67) has CBD in a late stage and Baclofen (Lioresal) for the pain. The pain bearable as far as we can see since she cannot talk or confirm

[Harshacceptance in reply to Tindb]

Thank you for the response and I’m sorry to hear about your wife 🙏

My dad is very similar, he is stoic and barely able to communicate. We just don’t want him to suffer