Dopamine agonists have helped me so m... - Restless Legs Syn...

Restless Legs Syndrome

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Dopamine agonists have helped me so much.

1967bagpuss profile image
29 Replies

After years of suffering and symptoms getting worse. Pain in my knees and hips from the jerking and having to sit on my hands at work as symptoms started in the afternoon I did some searching and found some research a professor had done with parkinsons medication being able to treat RLS symtoms I went to my doctor and asked her to look into it. I have now been on pramiprexole/glepark for 4 years and is absolutely brilliant. I have to take it every day or I suffer but taking these have absolutely changed my life for the better.

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1967bagpuss profile image
1967bagpuss
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29 Replies
thedragon profile image
thedragon

thats brilliant, so glad you have found something to help !

arjay profile image
arjay

Hi Just to see if anyone is on here. Just had the worst night for months and would welcome a chat.

Miggles profile image
Miggles in reply toarjay

Hi Arjay,

Hope its all over for last night at least, do you have any thoughts about things that can trigger or make thing worse for you.

arjay profile image
arjay in reply toMiggles

I'm not sure but I think salt makes it worse and also sugar. It's very difficult to avoid salt though unless I live off eggs

Miggles profile image
Miggles in reply toarjay

Salt for sure, with me also milk products, any of the inflammatory foods. It's a journey of investigation and devising your own strategy to cope, I've never had much help from the medical world, my Gp told me " I can't help you there do more exercise" which of course made it worse, then he gave me an anti depressant.........that's when I stopped asking him.

eileen49 profile image
eileen49

I take these too and they are brilliant for me x

arjay profile image
arjay

I've been taking pramipxol also. It suppresses it but for some reason the last two weeks have been hell. As i'm typing this I'm lying on the floor constantly moving my legs. Unless you've been there nobody has any idea what we're going through have they, Co Codamol also help but even those haven't helped recently :(

1967bagpuss profile image
1967bagpuss in reply toarjay

Arjay, you may need to up your dose. Mine has changed over the last couple of years, speak to your doctor. They may suggest taking 2 of your current dose to see if it works. There are times when I still have to take 2. And no other people think its a bit of a joke when you either tell them what you have or if they see the twitching but they have no idea of how it really is and how painfull. I once went on a driving trip with my husband and by the time we were on our way home we had to stop every half an hour for me to walk around and I had to kneel in the seat holding the backrest as my feet were banging so hard on the foot well I was in so much pain.

1967bagpuss profile image
1967bagpuss in reply toarjay

Arjay, you may need to up your dose. Mine has changed over the last couple of years, speak to your doctor. They may suggest taking 2 of your current dose to see if it works. There are times when I still have to take 2. And no other people think its a bit of a joke when you either tell them what you have or if they see the twitching but they have no idea of how it really is and how painfull. I once went on a driving trip with my husband and by the time we were on our way home we had to stop every half an hour for me to walk around and I had to kneel in the seat holding the backrest as my feet were banging so hard on the foot well I was in so much pain.

in reply to1967bagpuss

Your story of hugging the backrest is funny. =DD.

I can imagine the view that you gave others haha.

I do appreciate how desperate you became during a long

trip...I've done crazy stuff like that as well. I just couldn't

help myself..My legs were driving me insane.

arjay profile image
arjay

Bagpuss Thanks for your reply. I take three a day but cos it's been so bad recelty I took four yesterday and had a much better nights sleep thank god. Driving can be a nightmare. I've had the same problem having to stop and every service station on the motorway. Thanks for listening. It's good to know there a people out there who know what we're going through. Robin

Yes but do you get pain also or is it moving and jerking The painful type of RLS is horrible :)

in reply to

Mine is painfully

nightdancer profile image
nightdancer in reply to

RLS always ahs to do with movement. Pain is one thing that is thrown in for some of us, and of course, we have to rule out other causes of pain, too. Trial and error. RLS can go from mild to severe, pain or no pain, it is all very individual. It is movement related sleep disorder, and that strong urge for movement always has to be present for the correct clinical diagnosis. I get the pain, too, and yes, it is horrible.

1967bagpuss profile image
1967bagpuss

I do get some pain in my legs but its not unbearable luckily, the worst I get is from my joints with the jerking. Unfortunately I think I may have damaged my knees and hip as I now have pain in them even when my legs aren't playing up.

hi is there anyone out there that comes from England everyone seems to be from the usa I no its very common RLS out in the states was told recently by a GP I had to see

thedragon profile image
thedragon in reply to

lots of us are in the UK cally. i think it is just as common here as in the states. cant see why it wouldnt be!

in reply tothedragon

thanks but I am not being funny but everyone I speak to seems to be from the USA I no its a very common problem all over & I wish that someone professional or other could come up with a solution because it doesn't matter what meds I take nothing is working

thedragon profile image
thedragon in reply to

dont we all Cally!!!! just keep talking to all us lovely people . we will keep each other going!!!

in reply to

Im from the UK Cally

in reply to

thanks its nice to no where people are from

1967bagpuss profile image
1967bagpuss in reply to

What are you taking cally ?

in reply to1967bagpuss

im taking 3mg of repinarole 2 at teatime about 6ish then 1 at night before bed but this makes me very sleepy

in reply tothedragon

Hi Cally, im also from the UK :)

in reply to

same again thanks

simplesoul13 profile image
simplesoul13 in reply to

me too! Bedevilled with Parkinson's and RLS! Whilst my Stalevo calms my "PD" leg (left) it does nothing for my right leg! Had RLS years before Parkinson's and I used to run on the spot to calm them down, but this doesn't work for my right leg anymore. Sometimes even the Stalevo doesn't work on my left leg. Also the RLS switches from left to right leg and back again - totally mad! - which is how I'm getting especially when my so-called PD "nurse" says both should be cured with Stalevo! So much for the NHS being any help. Perhaps one day they'll start handing out cyanide pills and put us all out of our misery!!!! (Just looking on the bright side folks!)

hi bagpuss 1967 this med your on about pramiprexole /glepack is it the same meds as pramiprexole or is it a different med

1967bagpuss profile image
1967bagpuss in reply to

Pramiprexole and glepack are the same, it's just branding.

Hi Cally i am in the UK.

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