PSP Association
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Neck and Back Pain

I have read a lot of very helpful posts over the last few months re neck & back pain. I am trying to find out what pain killers you use and more importantly what drugs are working. I have gone from parcetemol to codeine but they don't even touch it. My GP is brilliant but has not seen anyone with PSP and my next hospital appointment in not until March 2016.

Do we know what causes the pain which seems exaggerated when I am on my scooter?

6 Replies

Are you doing any exercises? S does some that are aimed at Parkinson's, multi directional exercises and he goes to see an Osteopath regularly. This seems to keep him moving and relatively pain free, apart from his constant bruises!!!

Lots of love



Ask your GP to refer you to a physiotherapist as a priority (otherwise you will be put on a list and could be waiting months). They will be able to give you exercises to relieve the pain, stiffness and help balance.

Your GP can contact your hospital neurologist for you to enquire about pain relief as PSP can be badly effected by some drugs especially if they cross the blood/brain barrier! my wife had scopoderm patches prescribed for saliva control and one patch disorientated her for days, also many anaesthics have similar effects so if you have to go for any operations make sure they are aware of PSP.

Best of luck Tim


Just a thought about your GP - ours is wonderful, but recently I arranged for the PSP Association to send her an updated booklet on PSP. Perhaps it would be an idea to do to help your GP and others in the surgery (sure there is likely to be a time when your GP isn't available and I know what its like trying to explain it all in a very short time you are alloted). Our GP rang and thanked me for having it sent to her and found it so helpful she copied and circulated round the other GP's.

Our GP did a careplan that is put on a computer system here in Somerset that all doctors, paramedics etc can access should my hubby be admitted to hospital - good in case he has a problem when the carer is with him and I am not - he would have difficulty answering questions.



My Mum had bad neck pain and headaches and we treated them with heat packs, paracetemol, massage and analgesic gels (ibuprofen). I think the heat packs, paracetemol and massage helped - I am not sure about the gels. I am not clear whether the pain was muscular, skeletal or nerve pain.

Strangely, the neck pain and headaches were symptoms that actually got better in my Mum's final years. I do think that physiotherapy can help greatly, even for the bed-bound like my Mum, as it encouraged her to make use of what little strength she had.

March 2016 is a long wait if you are in pain. Perhaps you could write to your consultant to see if s/he can advise?

Hope you find something to help soon.



Thanks for your prompt responses and as ever will be taken them on board


I am certainly not a doctor but I certainly have PSP and neuropathic neck and back pain. I have not found opiates helpful as (and please remember I am not a doctor) opiates can't help neurological problems - you would need neurological drugs which operate quite differently


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