RLS

[Henshaw241241]

I have had RLS for years now i have been on rapinirole tablet now i am on pramipexole but don't seem to work now i am climbing the walls and just recently i am getting RLS more in the day if i am sitting. Just getting fed up with it no sleep can any one help please Tony

[Joolsg]

Hi Tony,

What you are describing is Augmentation. Use the search box, top right and type in augmentation. This happens when dopamine agonists ( ropinirole and pramipexole) stop working and the RLS becomes more intense, starts earlier in the day and moves to other parts of the body, like the arms, hands and trunk. You have to stop taking them and find an alternative med.

This should be done very, very slowly over months with the help of your GP and a back up med to help through the withdrawal ( which can be tough, not going to lie). Most people going through withdrawal need a strong pain killer ( work on the same receptors in the brain which cause RLS) like codeine, co - codamol or an opioid like tramadol or oxycontin.

You also need to have in place the meds which you'll take once through withdrawal, like gabapentin/pregabalin or oxycontin.

Have a look through this site and also rlshelp.org which is a website run by Dr Mark Buchfuhrer, based in S.California. He has a list of questions asked by RLS sufferers and his responses. Look at the later pages as they have the latest medical views on treating RLS. You will find a lot of questions on ropinirole/requip/pramipexole no longer working and suggested meds to replace them.

I went through augmentation and withdrawal last August with the help of the good people on this site, and lots of others have too.

It's tough, but once you're through it, the RLS is much less intense and can be controlled with other drugs or you may even find that supplements, vitamins and diet alone may do the trick. A lot of lucky people find they can stop the RLS by taking Ferrous bisglycinate 25mg at night before bed on an empty stomach. A lot of people find this helps while going through withdrawal as well.

Spend time going through this site in detail, arming yourself with all the information relevant to you. Check you are not taking anything that can make RLS worse like anti histamines and some anti depressants. Avoid alcohol as this makes it worse.

Most GPs and most neurologists are not familiar with augmentation or how to deal with it so print off as much relevant info as you can and direct your GP to the Professional section of this website. You will need your GP on side.

Take care,

Jools

[Madlegs1 in reply to Joolsg]

Brilliant and comprehensive answer.😎

[Graham3196 in reply to Joolsg]

We need a post for answers like the above where new people can go and read the state of the art for the general issues./ Nothing that is specific for a single person but together they make up a book where anybody can get the basic stuff. Like augmentation and that excellent list of drugs and supplements that we should avoid as the first step. Perhaps a "Book of Knowledge"

I saw the drugs to avoid a week or so ago and now it would take me ages to find it. Ages ago I started copying good replies into a word document but I soon found that it became too time consuming when I thought all I had to do was a simple search.

If others support this idea do we need the permission or cooperation of the moderator? Can we just start a post called (say) " Things a new victim of RLS needs to know."

Graham

[Hidden in reply to Graham3196]

Count me in Graham. Time to tame the beast.

[Madlegs1 in reply to Graham3196]

I suggested this before- it would save so much repetition.

How do we effect such a strategy?

[Joolsg in reply to Graham3196]

Brilliant idea. Not sure who to ask though...

[Graham3196 in reply to Joolsg]

Perhaps we don't have to ask -- just do it It would be good if we could get the moderator to put a note that would always stay on top saying that this is for basic information and any new topics should go into a new post for group input and discussion. A flow diagram sounds a bit too ambitious unless we have a IT expert with RLS who is awake all night and looking for something to do? I think we might have to ask one or several of our long term genuine experts with broad knowledge, to control what goes there. They would then be the only ones who could post there. This could be as simple as copying any post that fits a vaguely agreed description of what might be called "agreed information". I am sure that we have enough wise heads around to make sure all views are represented there, even the bar of soap can get a mention with an official comment on the gist of the results as reported in various posts.

If anyone disputes what is in or not in this post they can easily just raise a new topic. I would expect that we will still get thew same number of new topics but the new posters can just be referred to the

Body of Knowledge" before discussing the particular aspects of their personal version of RLS

[Pippins2 in reply to Graham3196]

We do this on the Facebook RLS support groups. We call it the "core information ".Basics on diagnostics, augmentation, recommended doctors and some meds etc. We also have a non med thread where anyone can add anything they have found helpful. There's a facility on Facebook where admin can bump up information to top of the page as necessary. We also have a pinned post with a bit of information plus a few basic rules which every new member has to agree upon. It saves alot of repetition for sure! X

[Izzybelle22 in reply to Joolsg]

Jools, I agree with you and Madlegs1's response. What an outstanding share. Thank you very much!!

[John_naylor]

Keep thinking the same myself. There is a series of questions to ask, a flow diagram is what would be used elsewhere. We should be able to create something to refer to (it would even be good for GP's!).

[LoisTonya]

Hi Henshaw,

For me sitting always triggers rls. During the morning I can sit for 10 minutes, then 10 mins on my feet before sitting again. The rls gets worse as the day progresses so I keep busy on my feet for the rest of the day - Ropinerole at night and , touch wood, I get a reasonable night. I usually get up two or three times in the night but 15 minutes setting the breakfast, putting out my clothes for the morning is enough for me to get another hour's sleep before doing yesterday's washing up etc.

[John_naylor in reply to LoisTonya]

I have been called the ironing fairy! But that's only when it is really bad...

[NoMoRLS]

I'm sorry. I too tried the prami but within 2 weeks awful side effects. Yes sitting in daytime can be awful too. Not always but enough to make me cranky. Follow the thread here...some awesome suggestions. Best to you and may you find relief soon.

[Pippins2]

Direct members to rls-uk.org,there a video there by Dr Christopher Early which explains augmentation very well