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Old 26-08-17, 06:38 AM   #1
elessi
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Default muscle cramp

my husband has huntingtons he is getting bad muscle cramps especially when he wakes up in the evening or at night. he has trouble walking after and says it burns. the doctor gives him quinine to help but they are getting worse. i just wondered if anyone had a similar issue. thanks
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Old 27-08-17, 09:39 AM   #2
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Default Re: muscle cramp

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Originally Posted by elessi View Post
my husband has huntingtons he is getting bad muscle cramps especially when he wakes up in the evening or at night. he has trouble walking after and says it burns. the doctor gives him quinine to help but they are getting worse. i just wondered if anyone had a similar issue. thanks
Hi Elessi

I hope someone comes along soon with a better response as it's not something my hubby complained about, but that may be more down to each HD patient being different.

What I did want to say though is if any patient (HD or non HD) feels things are not improving, or worst of all getting worse, it's definitely worth going back to the Dr as something is not working.

I was a great believer in going to the GP armed with information/background so I tended to make notes, notes and then more notes and put them into as concise as possible a table or document to show the Dr or Specialists.

Basically, it may help if you could take notes of the actual time; duration and what hubby has been doing/was doing beforehand (expanding a bit on what you have already outlined above) and other stuff such as his fluid and food intake in case it's some sort of hydration issue.

It's not just about data, I found once I started putting a bit of paper in front of people; or showed them a phone video of hubs and what I was talking about if appropriate, they took more serious what I was saying as it wasn't so much a guesswork/dismissive coment they could give me
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Old 27-08-17, 09:49 AM   #3
jacqueline
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Default Re: muscle cramp

Hi Elessi,
I haven't had any of my family with HD experience any cramp symptoms.

I am not at risk of HD but I am 72 and my cramps are horrendous. Not just the cramps in calf's either. Mine are on the outsides of my ankles which I just have to stand up and stand on my toes which helps.
The other cramps are from my knees going up to my groins which seem impossible to get rid of.
Sometimes in the early hours I have even had to go in the shower and direct the head of the shower onto the cramp areas.
Trish your message about making notes to give to the doctor makes fantastic sense and I may just do that.
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Old 28-08-17, 01:32 AM   #4
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Default Re: muscle cramp

Elessi...my husband went through a phase of getting muscle cramps in his calves mainly in the middle of the night. He'd suddenly scream out and writhe about and I'd just get up and do what you gotta do - stretch the leg out and massage it.....it lasted a couple of years on and off but....just one of those things? I assume it's to do with spasms/twitching constantly in muscles....They won't cause any lasting damage...........
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Old 29-08-17, 05:01 PM   #5
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Default Re: muscle cramp

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Elessi...my husband went through a phase of getting muscle cramps in his calves mainly in the middle of the night. He'd suddenly scream out and writhe about and I'd just get up and do what you gotta do - stretch the leg out and massage it.....it lasted a couple of years on and off but....just one of those things? I assume it's to do with spasms/twitching constantly in muscles....They won't cause any lasting damage...........
But boy do they hurt and are scary that they wont go.
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Old 03-09-17, 11:44 PM   #6
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Default Re: muscle cramp

thanks for the reply, i will try to keep notes i know its not dehydration as he always has a huge mug of tea on the go
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Old 06-09-17, 08:04 PM   #7
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Default Re: muscle cramp

Quote:
Originally Posted by elessi View Post
my husband has huntingtons he is getting bad muscle cramps especially when he wakes up in the evening or at night. he has trouble walking after and says it burns. the doctor gives him quinine to help but they are getting worse. i just wondered if anyone had a similar issue. thanks
one idea that springs to mind is PR spray.(blue and white aerosol can)
It's a very cold spray that makes you relax the muscle after it is sprayed on.

It says to avoid spraying on hands and neck.

A long shot but worth a try???


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Old 07-09-17, 09:10 PM   #8
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Default Re: muscle cramp

thanks will try
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Old 07-09-17, 09:12 PM   #9
elessi
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Default Re: muscle cramp

good idea thanks i will try and take some notes
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Old 09-01-18, 11:09 PM   #10
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Default Re: muscle cramp

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thanks for the reply, i will try to keep notes i know its not dehydration as he always has a huge mug of tea on the go
Magnesium is helpful for cramps in general. Not sure about huntingtons though. Tea has caffeine in it which acts as a diuretic so maybe increasing plain water intake might help too
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