Living with RLS

[7681]

Th uhh s is my first time on this forum. I've read a lot about people with RLS birding know of anyone who has RLS 24/7. I can't sleep maximum 2-3 hours then I wake up then I walk about and go back to bed after a couple of hours and maybe get an hour or so . Then I have to get up for work,and I have it in also. What has made me write this is i have just had a hip replacement and I have been walking the floor for up to 10-12 hours a,day and I am at my wits end. I am on the maximum dose of ropinerole but it just isn't doing anything. Has anyone any suggestions about what I could do ,I would be very grateful.

Maureen

[Loisann61]

I wish I had a miraculous testimony for you. It's an awful illness that little is known about and people that dont have it think we are crazy. They offer all kinds of suggestions to try. I have all I can do not to tell them to shut the **** up. Hang in there.

[Kaarina Administrator]

Hi 7681, I can well understand why you are at your wits end. Having had a hip op is enough to contend with let alone no sleep because of RLS. May I ask what daily dosage of ropinerole you are on at the moment. Are you taking any other meds as well?

[7681 in reply to Kaarina]

Hi I'm on the maximum 4mg I am also taking hydrocodeine,paracetamol and quinine.

[Hidden in reply to 7681]

It could very well be that you are having augmentation from the 4mg of Ropinerole. When i see some one say they are taking Ropinerole or any DA and its not working then for me that signals probably augmentation. Paracetamol will not calm your RLS and like raffs said quinine used to be for cramps not RLS. So if it were me i would be looking at the Ropinerole as the culprit of your not sleeping. Some people say after a op their RLS seems to ramp up so that might be a factor too.

[7681 in reply to Hidden]

Hi Elisse

thanks for the info but what do you when your talking about augmentation

[Hidden in reply to 7681]

This article explains augmentation and will give you a better idea if it applies to you. sleepreviewmag.com/2015/02/...

[Hidden]

Hi 7861, you are very welcome. First stop try:

rlshelp.org and look at the treatment options on the left.

Away from Drs you can always try cannabis if you can get access and there is Kratom which a few of us on here has used, obviously research first:

healthunlocked.com/rlsuk/po...

Away from all substances I find good but temporary relief with hot baths - as hot as you can tolerate.

There is the vitaltones binaural beats:

vitaltones.com/reviews.html

its FREE too a price I like

There will be many on here with other tips and advice. If nothing else you are with people who understand.

If you don't mind me asking what other drugs do you take? many antidepressants along with a host of other drugs make RLS much worse. Also have you had Iron levels checked?

Take care.

[Kaarina Administrator in reply to Hidden]

Hi raffs,

7681 already replied that they take the maximum 4mg ropinirole, hydrocodeine,paracetamol and quinine.

[Hidden in reply to Kaarina]

Yeah I caught that but they are drugs related to treating the RLS there are other drugs they might be taking which could be causing problems just wanted to rule that out.

On the quinine - it is used to treat cramps as opposed to RLS afaik.

[Pippins2]

Hello 7681,welcome to the forum. I am sorry that you are having such a dreadful time just now. I agree with Elisse you are almost certainly suffering from augmentation from the Ropinerole. Unfortunately not many doctors know about augmentation and they keep increasing the dose which is the exact opposite of what needs to happen! !!Now that the experts know about augmentation they recommend no more than 1mg of Ropinerole a day, 2mg absolute tops. Elisse has given you a link to an excellent article which explains a bit more about it. The problem is when you start reducing the Ropinerole with a view to eventually stopping it altogether then your RLS will most likely become very severe. Usually strong painkillers are needed to help you Painkillers work on the urge to move sensations as well as on pain. As you recently had your operation I would suggest that you try to get some stronger painkillers to help you get over the op and see your doctor taking in information about augmentation and ask him to help you get off the Ropinerole. Once you have had augmentation it is not advisable to change to another Dopamine Agonists as it will surely happen again. The only one you could use with caution is the Neupro patch (which is expensive, maybe alongside a strong painkiller, let us know how you go, oh and get your Ferrartin iron levels tested, it needs to be over 50 preferably 70 which is much higher than that of a non RLS sufferer Whatever you do don't up the Ropinerole as you may get some improvements for a short time but the RLS will come back worse than ever, Good luck. Pippins2 x

[7681 in reply to Pippins2]

Hi Pippins 2

Went to the doctor's this morning she has taken blood to get my iron level checked . They have gave me pramipexole 0.088mg to try ,hope I get some relief as I have not slept all night and have been walking the floor since 5pm last night

7681

[RegBlunt28 in reply to Pippins2]

Hello I was wondering what is Ropinerole? Also augmentation is that when your meds that you are taking no longer work? I take Mirapex I don't think it works to well anymore. A friend had me try tramadole oh my gosh 4 nights I have slept good.