Dopamine agonists have helped me so much.

[1967bagpuss]

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.

[thedragon]

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

[arjay]

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

[Miggles in reply to arjay]

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 in reply to Miggles]

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 in reply to arjay]

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]

I take these too and they are brilliant for me x

[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 in reply to arjay]

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 in reply to arjay]

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.

[Hidden in reply to 1967bagpuss]

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]

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

[Hidden]

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

[Hidden in reply to Hidden]

Mine is painfully

[nightdancer in reply to Hidden]

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]

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.

[Hidden]

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 in reply to Hidden]

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!

[Hidden in reply to thedragon]

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 in reply to Hidden]

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

[Hidden in reply to Hidden]

Im from the UK Cally

[Hidden in reply to Hidden]

thanks its nice to no where people are from

[1967bagpuss in reply to Hidden]

What are you taking cally ?

[Hidden in reply to 1967bagpuss]

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

[Hidden in reply to thedragon]

Hi Cally, im also from the UK

[Hidden in reply to Hidden]

same again thanks

[simplesoul13 in reply to Hidden]

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!)

[Hidden]

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

[1967bagpuss in reply to Hidden]

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

[Hidden]

Hi Cally i am in the UK.