My husband has PSP. I called in Hospice in early Dec. They have been very helpful except my husband does not complain of pain but I feel

he has pain but won't tell me. They prescribed a cherry flavor liquid of acetaminophen He developed severe diarrhea. when I stopped giving him this liquid, after 3 days he was better. Has anyone used or had experience with pain in the patient and how did you deal with it.

12 Replies

  • I thought my husband was in pain because of his constant moaning but he has said he isn't and I believe him now just through observing him when he watches his grandchildren or something on the TV he likes. He is obviously relaxed then and doesn't moan so much. He said he knows he moans and can't help it. The sound is very much like the sound one of my sons made when he was feeding and Colin recognised this and told me he sounds like the baby did. When we saw a friend of ours who has very bad arthritis, Colin said, "I'm lucky,no pain". I know some people with PSP have pain and I know my husband doesn't seem to hurt himself even when he falls, but if they say they don't, maybe they mean it. I hope your husband isn't in pain. Other symptoms are bad enough.

    Best wishes

    Nanna B.

  • thank you so much I am so afraid that I am missing something. I get very anxious about his care

  • Mum never complained of pain until she lost the ability to stand . Then she got contracture of the hip . Because of her inability to tell us the hospice arranged for the care staff to put her on to painkiller patches and these helped enormously . You can also add further pain relief whilst on these.

  • thank you so much, I am going to look into them

  • Hi I use Panadol osteo & it helps me - but the neurologist don't know If I have PSP or not - I've been seeing a neurologist since 2008 + saw a 2nd neurologist so hope the info on Panadol l helps I do get pain & Panadol helps me

  • Thank you for your info I will look it up. I hope you get an answer soon from the neurologist. This is a very long and difficult journey but knowing what you are dealing with will help you face it. my husband was first diagnosed with cortical basal degeneration then after a spinal tap and further

    symptoms appearing, his neurologist nailed it.

  • My husband also moans sometimes but says he is not in pain. I asked him if he was just bored and moaning to break the boredom. I believe him! Otherwise, he is comfortable. Don't go by facial expressions? If I did he would be in pain frequently. He makes the most awful faces. HaHa. Maybe because he can!

  • Caroline Thank You, I am just trying to make sure I am doing everything I can for him. Some day are really hard to reassure myself. Sometimes I think I do too much and get weary but then I get upset at myself for having those

    thoughts. There is certainly a fine line to peace of a caregiver.

  • I am convinced that PSP patients do not feel pain... my mother has PSP and is in the late stages, there have been instances where she SHOULD HAVE felt pain.. ie: Toe nail fugus and bad overgrowth that had to hurt when being clipped and cleaned... nothing. She broke a bone in her back from a fall. nothing. She never complains or whinces at all. I would be interested to know if this is normal with PSP.

  • Hi lancjack -

    My husband didn't appear to feel pain - even when he broke his hip.


  • I'm curious to know those who don't have any pain, are they in the "later stages", or have they ever had pain associated with PSP or CBD? My husband has hand and leg cramping it's quick and very painful. He also sometimes has shooting pains in his hands. He suffers from head aches that come on very quickly and go away usually within 5 - 10minutes. These also are very painful. None of this is constant, but it is frequent. Does anyone who has no pain now, every suffered from any of these that my husband has? I know everyone is suffers differently from this disease, and I am hopeful that this pains won't last.

  • Hi Guy's and girls. Hubby has just been put on Norspan Patches for pain, he rarely feels pain a few aches in the arms that's all, the Norspan was to help with skeletal pain even though he cant feel it it is still there, since he is having problems swallowing and now the Panadol liquid is a big ask and generally a waste as most of it come out again even when mixed in food or drinks. He isn't planking as much and sleeping slightly better with less moaning ( what sleep he has which is mostly 2-4 hours if he is lucky) The Parkinson Nurse suggested the patches and i had to phone the specialist to get the doctor to prescribe it, it can cause infections it's self but for the last stage's it is well recommended i think. Keep it in mind as nobody gives this information to you, the Parkinson nurse has seen hundreds of people with these problems so don't be afraid to talk to her!

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