PAIN: My pain is mostly my neck and upper... - PSP Association

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PAIN

edkor profile image
7 Replies

My pain is mostly my neck and upper back and when i get up I am very dizzy My question is this what kind of pain do you have ?

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edkor profile image
edkor
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7 Replies
CheekyChops1973 profile image
CheekyChops1973

Hi edkor . I have pain in the neck and it is stiff . I am also having chronic pain in my calf muscle in my right leg like constant cramp which makes my foot do funny things ! I have decided for the moment to stop levadopa as I'm sure this is making things worse . I don't have dizziness though yet at least ! They think I have cbd and I am seeing a movement disorder specialist in December!

Its hard to find something that helps isn't it and I feel like I am taking one tabletvto counteract the effects of another . like a vicious circle !

I have a bad tremor in my right hand . do you have tremor at all and wondered if you take levadopa and if it helps at all ! All the best to you !.PS I also get a bit of pain down my right arm and have had chronic pain in my trunk kind of down my side and in my ribs and then under my armpit and down my arm. Have just had to go to bed when this happens as lasts about ten minutes then wears off . but it is almost disabling ! :)

vsm0001 profile image
vsm0001 in reply to CheekyChops1973

Cheeky,

My husband has CBD. He also has a stiff neck and it is difficult for him to turn his head. That's how everything started. His left arm is totally stiff and frozen. His right arm has begun the process of stiffening. He has as the shaking with both hands. I find of I hold him at his wrist and apply a slight pressure this will ease. His right arm hurts all the time now. Gw is on a very strong muscle relaxant which is pretty strong. No levadopa.

Seems to hinder more than help. Wishing you the best

Vsm 0001

CheekyChops1973 profile image
CheekyChops1973 in reply to vsm0001

Thanks vsm 0001 .

I am sorry for you and your husband . levadopa does seem like more of a hindrance than a help . I've tried to reduce it but felt sick earlier so had to pop another in ! I'll have to wait to see what MDS says . does seem to make me stiffer though . all the best to you too . thanks for taking the time to message . !just wondered what muscle relaxant your husband takes . I have found baclofen helpful at times !

vsm0001 profile image
vsm0001 in reply to CheekyChops1973

Cheeky,

My husband also takes Baclofen, but does not seem to take away the discomfort he is now feeling with his right arm , especially at night. So the dr prescribed tiZANidine HCL 4mg tab. Generic for Zanaflex. He takes one before bed only, it makes him extremely sleepy, which is good because he was having difficulty sleeping.

CheekyChops1973 profile image
CheekyChops1973 in reply to vsm0001

Thanks vsm0001

Kind of you again to reply to my message ! Going to look up that drug on google ! Hope today is as good as it can be for you .:)

vsm0001 profile image
vsm0001 in reply to CheekyChops1973

For you too

I would recommend that you read the following weblink:

dizziness-and-balance.com/d...

The pathology for PSP is not the same for everybody, there are huge variations. Pain is not very typical though. And it makes sense to try to figure out what the root cause is. Very often due to falls skeletal problems occur. This happened in the case of my wife. Her pelvis and right hip got misaligned and that after a while led to severe pain in her right leg, right arm and right neck. She had to take strong pain killers to cope with that. After a visit to an osteopath the cause of this problem was established and by treatment from the osteopath and weekly massages she got completely rid of the pain after about three to four months. It takes a while. However, it is in her case also clear that her condition causes her muscles to get very tight. So we have continued with the weekly massage and in this manner have been able to avoid the reoccurrence of the pain. Because the mobility is getting worse and worse, it also means that the body does not get the necessary exercise. So in a way the massage overcomes that to some extent. At the moment my wife gets every week 2 hours of sport massage and in addition twice per month and extra hour of Pilates massage / exercise. So my recommendation is to see an osteopath first. If there are no skeletal problems, then to find yourself a personal trainer with massage qualifications.

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