neck pain

[ncgardener799]

My husband has PSP, for almost 7 years now. His progression has been a slow decline so far, but lately he is complaining of neck and shoulder pain at night when trying to sleep in bed. He is not one to complain of pain so this must be very uncomfortable for him to mention it. During the day when he is sitting up in recliner or moving about the house he does not have much discomfort, but it occurs as soon as he gets into bed at night. I have tried different pillow positions, heating pad, massage, muscle rub medications, and anti inflammatory medications. Heat seems to help, but only slightly. Has anyone tried Botox injections or muscle relaxing medications for this problem?

[lesauerbach]

My wife had PSP and also suffered from cervical dystonia, a twisting of the neck muscle. The only treatment that gave her relief was botox. A word of caution: find a doctor who is experienced with this treatment; it took us a couple of tries before we found the right one.

[Kasenda]

Our GP prescribed Diazepam which does help the neck spasm.

[ConcernedEx]

I’ve heard Botox works. Also, have you tried getting a hospital type bed - one that raises? They have some that also come with massage features. My experienced neck problems and pains and had Fushion surgery …..I don’t suggest doing that AT ALL. The surgeon cut his vocal cords in worrier - causing more damage to his psp soul.

[T-val in reply to ConcernedEx]

I was about to suggest the same thing. The hospital bed is a godsend for my Mum as she has the pillows raised so not much different to her recliner position.

[ConcernedEx]

Sorry, type error that was supposed to be “cut his vocal cords during surgery”

[Richard33 in reply to ConcernedEx]

If you ever post something there is an option to edit it later if you open your post 😀. (and Fusion surgery! Have we not enough to deal with!)Richard

[ConcernedEx in reply to Richard33]

Excuse me, but I do not understand your reply?

Am I not allowed to post that my experiences with my ex? Is this not a safe place for those who have and/or are caring for patients with PSP?

[Richard33 in reply to ConcernedEx]

Hi, Sorry!!! I have edited my response so it makes more sense. No offence or criticism meant in any way.

[ConcernedEx in reply to Richard33]

Thank you for your apology- accepted.

[Atomic55]

My partner has had Botox in hands, arms and chest (to reduce stiffness) not been successful. Tends to be more successful if patient has some mobility and is able to keep movement regular to keep muscles and tendons flexing. My partner limited control if any and needed therapy alongside the Botox but with Covid this wasn’t possible and now he’s lost virtually all movement in his hands.

[daddyt]

I experience some dystonia in the neck that affects my right shoulder and arm. Heat and a little extra Tylenol help me for now. Botox may be the solution for your husband. It works for my right leg and foot.

[ncgardener799]

Thank you everyone for suggestions. His Dr prescribed a muscle relaxer and thankfully last night we both had a good night sleep.

[bazooka111 in reply to ncgardener799]

Happy to hear!!! ((Hugs))

[mjtogether]

Baclofen and a massage w/heat helps my husband so far with muscle pain.

[am2015]

I'm sorry but we never used Botox on Mum. We would do massage, a hospital bed and bought a firm memory foam pillow to help. All the best with your husband.

[Planthead]

If you are in the UK, you will have to be referred to a consultant that does it, he could be a parkinsons or Ms specialist. It is effective to begin with, but has very limited use, once the limbs are fully locked. Worth a try as it will under the NHS.

[oilman1]

I use CBD creme on my wife's neck and it seems to help some.

[ladydog255]

My husband has the same problem. He finds a neck brace (one from a drug store works). He might wear it to bed or sitting in his recliner. This might work until you can set up the BOTOX.

[Cianodude]

Hi my mum has CBD shes waiting for an appointment for botulinum toxins injections and theyve started her on rivotril which is similar to baclofen drug....has anyone used rivotril? She has total spasticity and dystonia in both hands and arms..

[MRSYafffle]

My mum has had similar aches and pains. She has acupuncture and is on codine and paracetamol with ibuprofen gel. This mix is helping at the moment, her anti depressants in the evening are supposed to be helping too.