PSP Association
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Is PSP usually painful?

In the last few weeks, my father has been needing painkillers (he’s now on Fentanyl patches, topped up with oral diamorphine as necessary). I think the pain is because all his muscles are so stiff and contracted. It’s painful to have his position changed, but it has to be done for cleaning and to avoid pressure sores.

Does anyone know if this is likely to get worse?

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Hello Blots

I'm afraid I'm not much help to you. Sounds like Dad is getting pretty tired, strong meds and do hope they are able to keep him comfortable.

Hugs

Dee

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Thanks. Keeping him comfortable is the goal now.

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Sorry Blots I don't know.

I have just found a study for pain in PSP and it said it wasn't so common compared to MSA and Parkinson's.

Would physio help loosen the muscles a bit?

People with Parkinson's sometimes use Cannabinol oil for loosening the muscle and lessening tremors. There has been quite a lot of discussion on this here recently.

I hope this helps a little.

Best to you

Kevin

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A physio might have helped earlier — you know how it is, they come for three sessions and then sign you off, as if it was a sprained ankle or something. But it’s too painful for him to move at all now. He’s just completely curled up.

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I understand... it sounds miserable - would a muscle relaxant help?

I guess you've already got clinical advice - I'm just trying to think outside of the box.

Sorry if its not so helpful.

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It might do — I really don’t know. The clinical advice is nursing staff in the home, the GP, and a speech therapist. The GP visits quite often.

It seems the painkillers do work, but they were only started fairly recently and the dose has already had to be increased.

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If you are in the UK and he has a neurologist it is entirely acceptable to telephone his/her secretary and ask for a telephone discussion.

We have done this a couple of times in the past and they have stepped in really well with advice to the GP on how to proceed.

This does sound a little out of a GP's league.

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He hasn’t seen a neurologist for a couple of years or more. They said they’d be in contact about the next appointment, but they didn’t do it. My parents didn’t chase it up because it was such a performance getting to the hospital and they hadn’t ever got any help from it. If the pain doesn’t seem to be manageable, that’s definitely something to try.

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Do it - they can only say no, or help.

Again if you are in the UK (it is so helpful to know which country folk are in because systems vary) If the neurologist says case closed then you could ask the GP to do referral to a local neurologist or movement disorder specialist.

Good luck.

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My LO had the same occurrence and we felt as well that his pain was from the muscle rigidity. Hospice put him on morphine and it totally relieved his pain.

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Thank you. Both of the drugs I mentioned are morphine variants. It sounds as if that’s what some people need. I have just spoken to my mother and she says they’re using an anti-inflammatory skin cream to help with joint pains too.

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This is an interesting post as Ben has become very rigid and one hand a foot has become very contorted. He has a 10 mg morphine patch and takes clonazipam every night and sometimes in the day too. We have liquid Oromorph at the ready. I don’t think he feels pain in the same way now so if he complains that something hurts I know it must be very painful.

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My father’s the same. He rarely says that he’s in pain, unless he is asked, and some days he doesn’t have the energy even to mouth a yes or no.

Such a wretched illness.

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It's certainly up there with the baddies. xxx

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It can be painful for me especially during contractions and spasms, but its all manageable. I would be very concerned about Fentanyl in any shape or form period. It can be highly addictive... creating more ghost pain that can only be relieved through more Fentanyl. I know that you want to see your father as comfortable as he can be, but THIS DRUG is not the answer, his doctor knows there are alternatives available. I lost my son in November due to an opioid related death.

Tim

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I’m very sorry to hear about your son. That’s such a hard loss for a parent. I’d agree about the use of Fentanyl in a different situation, or earlier in the course of the illness, but my father is really in the final stages of his life, so addiction isn’t the same issue that it would be otherwise.

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Iim also sorry you hear that you lost your son to the evils of addiction to opioids but I have to agree with Blots, it's the same with Ben, he's in the later stages so the addiction question isn't something I worry about. The neurologist didn't advise against using a low dose with view to increasing it as the pain increases.

Love Kate xx

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