constant need to stand up.: Hi I was... - PSP Association

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constant need to stand up.

fothergilla profile image
9 Replies

Hi I was wondering if anyone else has experienced this. My dad will be fairly comfortable during the day, just sort of napping here and there and then at night he starts getting terrible leg cramps and insists on standing,(which takes two people or a sit to stand) nearly every 10 minutes throughout the night. He will cry and say help me, get me up, get me up. It is unbelievable. He takes all kinds of stuff for sleep and pain and still this happens 9 out of 10 nights.

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fothergilla profile image
fothergilla
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9 Replies
pzagy profile image
pzagy

sounds horrible, have you tried physio?? I know that it helped my mother in law with her hands. Try a good massage before med with a medicated ointment to relax the muscles....

Katiebow profile image
Katiebow

That sounds terrible for all, do you have night carers cos I don't know how you can sustain being woken that many times every night.

Love Kate xx

Duffers profile image
Duffers

How on earth can you sustain that kind of disruption to your night time rest. The docs must surely have some other things for you to try. Do you think one of those foot cycles would help or a floor leg vibrator/massager which he just puts his feet on while sitting. I hope something helps because you're not going to be able to carry on like this before you collapse. All the best and do let us know if anything helps. Marie

fothergilla profile image
fothergilla in reply to Duffers

Thanks for all your replies. We do have caregivers at night. But it isn't a good situation. Either they quit or just refuse to get him up. I had the foot cycler. He wouldn't use it. I had a massage person come over and he said it doesn't help and he doesn't like it. He is on restless leg medication and muscle relaxers. Right now he went to acute care to see if there is anything that will help. I just have never heard of any psp sufferers having this intense leg cramping. It is just unbearable for everyone.

Amilazy profile image
Amilazy

You need help quickly or you and I assume your mum will burn out from lack of sleep. Talk it through with your Dr (or if in the U.K. the District nurse).

From your earlier posts you have had Botox on his legs without effect. It may be worth checking with a pharmacist as your dad is on a number of meds so there could be a bad inter-reaction.

There is an old rugby treatment for cramp ice pack to the area and extending the leg against a resistance or raise the leg to your shoulder and rub the effected muscle. The pain is horrid but usually eases. One other point was a slightly salted drink before and during a hard training session or match helped maintain the mineral levels and fend off cramp.

It may be he is sweating more than usual during the day and not taking enough hydration thus causing the overnight cramp. In any event you need to see someone soon before you can no longer care for him due to you breaking down. Good luck Tim

BindiLeech profile image
BindiLeech

Hi there....... I have had a recent sleep apnoea study done where I was admitted to a private hospital overnight. The end result was although I had no sleep apnoea ( yeah!!) I was diagnosed with an extreme reading of RLS ( restless legs syndrome) which sounds to me like that Could be your Dad). The outcome is i am now taking Madopar 62.5mg X1 capsule before going. To bed at night. Hoping everything works out for you.......cheers Bindi x x x x. Xx. X. Xxxx x. X x x xx xx 😘

abirke profile image
abirke

I agree with pzagy. My husband started doing something with his legs..not so much pain but shaking but what really got me was the moaning....even when his legs were not shaking. So I give him a hearty massage especially with his legs before bed. Both the shaking and the moaning have stopped...I also try to exercise him during the day.....though he has not been to the gym in weeks. There are also supplements for leg cramps with potassium and magnesium in them. Check with your Dr if this may help your dad.....remember even over the counter supplements may wreak havoc with other drugs...but the supplement may help.

Goodluck, hope you find an answer...soon!

AVB

vsm0001 profile image
vsm0001

My husband has CBD and we have the same issue. One thing that I have found that seems to help is heat. I will take one of those heating 'pads', that you put in the microwave, heat it and place it down at the foot of the bed between his legs. I make sure it won't be too hot if he were to touch it. It's done pretty good most of the time. I think the heat helps him relax. It was a shot in the dark that did the trick. I hope you can get some well needed rest and he can get some relief.

vsm0001 profile image
vsm0001

My husband has CBD and we have the same issue. One thing that I have found that seems to help is heat. I will take one of those heating 'pads', that you put in the microwave, heat it and place it down at the foot of the bed between his legs. I make sure it won't be too hot if he were to touch it. It's done pretty good most of the time. I think the heat helps him relax. It was a shot in the dark that did the trick. I hope you can get some well needed rest and he can get some relief.

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