PSP pain relief ??

[JB569]

Hello all. Just wondered if any of you have any tips on pain relief. My poor Mum is in such pain now. Her hands are like claws and her hands and arms are so weak she can hardly move anymore. Her neck and shoulders are incredibly stiff now and she is in agony. We have a therapist come weekly to give her a gentle massage and she loves this. She has acupuncture and we are going to try the hydro-pool at the hospital also. However, everything is only temporal relief and the majority of the time she is in increasing pain. Analgesics don't really have any impact. Any suggestions ?

[NannaB]

Hi, sorry, I can't give you any solutions but perhaps you could answer something for me. Has your mum told you she is in pain? My husband can't move his upper arms at all, he is so stiff. Sometimes his legs shake, sometimes he twitches but if I ask him if he is in pain, he puts his thumbs down, saying no. He looks as if he is in pain but indicates he is not. I sincerely hope he isn't but do sometimes wonder if he is giving me the correct answer.

X

[JB569 in reply to NannaB]

Hello. Sadly my Mum tells us that she is in terrible pain, it's awful as we feel so helpless and don't know what to do for the best to help her. Nothing much makes any difference for very long. Her legs ache but not as bad yet and she is still managing to shuffle a bit but only for less than a minute. She has no upper body strength at all and can't weight bear. Everyone is different however so maybe your husband isn't in too much pain bless him. xx

[jzygirl]

Brian can barely open his right hand his arm and neck also very stiff. He is able to (weight bare) stand up. But not walk.

Like NannaB i do ask if he is in pain and he always says no. I do know that on the odd occasion he does say he has got a headache so i think he can register pain. But is not in pain. Janexx

[shasha]

WHAT DOES HER DR SAY?

[Kelly55]

So sorry to hear your mum is in pain, terrible to watch our loved ones suffer. Mum had chronic pain in her arm, neck and shoulder but after acupuncture and a physio recommended exercise she has improved so much! Still has no use of right arm but the pain is much more bearable. I think the acupuncture made a huge difference! We also have paracetamol syrup and morphine sulphate (oramorph) on repeat prescription from the GP.

Fingers crossed for you that the physio and acupuncture start to offer more relief x

[Nanny857]

W had stiffness in his neck and was in a lot of pain. Physio said they couldn't do anything more for him. Doctor put him on a 25mg Amitriptyline to be taken at night. At first it didn't seem to help the pain but he was sleeping better. I got a lot of help from everyone here and W now goes to chiropractor once a week and continues taking medication) and today he said the pain had almost gone and he could turn his head to the side. A good day today for us.

I do hope something works out for your mum. Nanny xx

[dllera]

Have you considered botox shots for the neck and arms? They really helped my dad. We did manage with pain mediation as well. Also- wrap up some sock and have her hold them so her hands aren't clutched all the time. If I had video - I could show you a trick to get the hands open but I spent LOTS of time massaging my dads forearms and hands. I would also stretch his wrists and fingers to try to keep them from becoming stiff.