Awake

[beady3]

Hi friends , legs are going mad , so am I , is there anyone else walking the floor xx

[Madlegs1]

So sorry to hear that!

Is there anything that set this episode off?

Can you try stretches - hamstring and calves? Milky - cinnamon warm drink.

Hopefully you are asleep by now.

Cheers.

[involuntarydancer]

Really sorry to hear this beady. Hope you got back to sleep and/or have a good night tonight. Bloody, bloody legs.

[Adge]

Yep, I was walking with you last night, in fact have been all week this week. I've just been told I've got policeman's heel - no doubt caused by the many miles I walk up and down the kitchen tiles with bare feet. Now not only can I not sleep, but I've been told to try not to walk much so I can't dance the nighttime jig either. Hope things change for you sooner rather than later, you are definitely never alone in being awake most of the night!

[beady3]

Thanks for reply’s , you never know what tonight might bring xx

[Cntrybabe1965]

Been up most of the night tonight. Bad episode tonight.

[Shelleam]

Me too. Went cold turkey of pramipexole because of augmentation. It's been 3 weeks and I'm turning into a zombie. I feel your pain!!

[involuntarydancer in reply to Shelleam]

Bless you. Cold turkey off pramipexole! You are very strong. Were you on a high dose? Congratulations for getting to 3 weeks - that is amazing. Coming off pramipexole was, I think, the hardest thing I ever did. I really hope your symptoms start to improve soon. By rights they should do. Are you taking any other medication? I hope you have your focusing on your iron levels.

[Shelleam in reply to involuntarydancer]

Thanks so much for the encouragement. Compared to a lot of you my dose was low only .5 mg. a day and Dr. added 6oo mg of gabapentin when pramipexole alone wasn't working. I started getting augmentation in my arms and then the meds stopped working. I'd go off for a few days and then start again, but as you all know, the times I'd have to go off were getting closer together and I'd have to stay off meds for longer. It was agony. I happened to find the John Hopkins site and then this awesome site and realized what was happening. So, no meds at all for it and suffering. Trying every suggestion here and am going to doctor soon to have iron tested. I'm up walking the floors again tonight. Aargh.

[beady3 in reply to Shelleam]

There isn’t a lot but walk is there as your legs won’t stay still , I do get it in my arms as well but last night was good so who knows what tonight might bring x

[involuntarydancer in reply to beady3]

So pleased your night was good last night, beady

[involuntarydancer in reply to Shelleam]

Shelleam, 0.5mg is a high enough dose. No wonder you are having bad symptoms. Would you not consider asking your GP for some tramadol? As a temporary measure to get you through. Then as your iron levels increase (if they are low), you might find you don't need it and can get by without prescription drugs. It is a lot of suffering to go through pramipexole withdrawal with no meds at all. I think I went into a kind of spasm when I came off pramipexole and it wasn't until I got oxycontin about 3 months later that my symptoms started to settle down. In some ways I think getting the peace that the oxycontin afforded helped my body to calm down and it was from that point that things started to get better (in fairness my serum ferritin levels started to rise at that point also so that helped too). Obviously it's not recommended to stay too long on the opioid if you are planning to discontinue it because they are not fun to come off either but for a couple of weeks I would have thought you should be ok.

[Shelleam in reply to involuntarydancer]

Thank you so much for your advice. I'm so afraid of opioids and having to suffer again thru withdrawal but your logic as to why I should makes sense, so I'll talk with my doctor. This site is a godsend and if I can help you in anyway, let me know.

I

[involuntarydancer in reply to Shelleam]

I can completely relate to what you say. I was astounded when I realised that one of the few remaining options for me was opioids. I actually could not believe it and I was petrified taking the oxycontin at first. And definitely it is worth being very guarded in how much and for how long you take it. I took it for about 3 months the first time and nearly six months the second time and, I won't lie, each time it was very difficult to discontinue - not quite as hard as stopping pramipexole but not fun. I suspect however that if you took it for two or three weeks you would probably be able to stop it with less awful withdrawals. It would get you through the worst. I found a product called agmatine sulfate which apparently is a strong opioid potentiator which means that in theory you can take less of the opioid and still get the same results (paracetemol is also supposed to be a potentiator). I had to order it from the states (the agmatine sulfate - not paracetemol). I think it was helpful but it is always hard to know ...

I agree about this site being a godsend. I don't know what I would do without it. It is so reassuring and affirming to be able to discuss rls problems with people who totally understand just what a debilitating condition it is. I have learned so much on here and always get answers when I have problems. I have made some lovely virtual friends also who have enriched my life.

[Matrix]

I have had whole body restless legs ifykwim it. Is a thing and I have had it since 7 am , I'm exhausted with it and still awake . Went to the loo and saw a spider put a jug over it so hub ca put in garden tomorrow.im sorry you're suffering too , all I can suggest is walking that's what I do .x🤗🤗😇

[Lancerhog]

Yes. It is 2:38am and I am up pacing the floor. Went to bed with no symptoms and woke up two hours later. Am on 1mg neupro patch, 2 50mg tramadol and 1 300mg gabapentin. Am trying to wean off gabapentin as I was on 2700 mg of gabapentin at one time.

[beady3]

Lancerhog you are on the same meds as me, I am on 2mg patch 100mg Tramodol and 150mg Pregablin x

[Smaslow]

I am right there with you,,, I haven’t slept in Months... I will message u what I am going to try .