RLS - Ropinirole - NO sleep.

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Hi...I have suffered from RLS for around 2 years when reducing on buprenorphine on an opiate detox...once I reduced past 2.8mg I noticed that I was experiencing the typical symptoms of RLS...it took a year for me to find out just what it was that I had,ie,RLS...I also found that when going back up to a dose higher than 2.8mg of buprenorphine that my RLS would stop totally...however,my main aim was to get off of this treatment and I am now at the stepping off to freedom point at 0.4mg of buprenorphine...I have been prescribed Ropinirole for the RLS and although it is somewhat effective (not totally) I do NOT get any sleep at all...since July I have had a pattern of no sleep at all for 4 or 5 days and then maybe,if lucky,I will sleep from sheer exhaustion for a few hours and then back to the same merrygoround...I have only been on Ropinirole for several weeks and although I have had some relief from the kicking/spasms etc I am at the very limit of endurance due to lack of sleep...I returned to my doctor today who told me to increase my dose to 3mg (!!!)...current medical thinking is that 1mg is a maximum...and so here I am at almost 3am trying to while away the hours in distraction techniques...I am going to see my hospital buprenorphine prescriber on Monday coming (9th Nov) and will try to get put back up to the dose of 2.8mg that I KNOW stops my RLS and I also get to go to sleep...I feel as if I have no alternative as "normal" GP`s just don`t listen to patients about what works and are so tied up in not prescribing opiates that patients suffer...what is the difference in prescribing opiates that WORK for RLS sufferers and have less side effects than the dopamine agonists etc that have horrendous side effects and are as addictive as opiates (in terms of not being able to just come off of them) ? ...for RLS sufferers it makes little difference as any medication will be taken daily and for the rest of a sufferers life...I`ve been 7 years free of active opiate use that was brought about by hospital admission for burns sustained in a house fire...I feel as though I am being driven into a corner of getting addicted to opiates again just so I can get the treatment I know works !! ...What a mess our health service has become...it is SO difficult to get an appointment at my surgery that at times I have not bothered calling and I have not actually seen "my" doctor who knows me (for 20 + years) for more than a year now...there is a shiny new combined surgery building in my locality that is great for statistics but of little functionality for the actual users of the service,ie,patients...it`s a bit like a tennis match where you call for an appointment and they call you back to see if you "need" one...you,in turn,then try to serve up a valid reason as to why you want to see the doctor...how about "because I am feeling unwell" ?

Rant over...take care...bye for now...miaperson

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  • Posted

    ps...just to clarify...although an opiate substitute,buprenorphine is not a drug that users "get off" on...there are no highs experienced with the use of buprenorphine as there is with methadone or other reduction substitutes...just mentioning this as there is a (justifiable) tendency for people to assume opiate addicts are looking for a way of getting a free high...it is not the case with buprenorphine use.
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  • Posted

    Hi Miaperson

    I have long experience with RLS and the effect of lack of sleep consequent to it.

    I have only found one solution.  I tried several drugs and had bad reactions to them either immediately or after a short period of use.

    It has been found by some people that the cause of their RLS is a food intolerance which seems to be related to the foods that cause thew problem called irritable bowel syndrome (ibs)

    This is just experience of a few people and has no scientific justification other than it has worked for some.   The Monash University in Australia developed a diet called the FODMAP diet.   This is a two part action.   The first part is a very strict exclusion diet where you make sure you dontr eat any of the foods that are causing you problems.   This is suppposed to be followed for about 8 to 12 weeks.   I found I needed longer and then your symptoms might have gone away in which case you are lucky because it means you have found a reason for your RLS.    Then what is supposed to happen is that you re-introduce foods carefully one by one until you identify certain groups that are causing you problems.    From then on you "just" avoid those foods and enjoy eating everything else.   Of course you also get to enjoy 8 hours sleep again.   For some people it workks just like the plan but for others it either doesn't work at all or they cant reintroduce any foods successfully.    I think this means that you are intolerant of any of the identified food groups.   But you still enjoy sleep.    Early evidence claimed that it had a 70% success rate with ibs but no-one has done the work to produce statistics for rls.   Mainly becasue there is little research into rls and what there is seesm to reject the food intolerance theory out of hand.   Cynics say there is no profit in a diet that works but I wouldnt be so mean.

    If you arte interested the diet is free and the food is probably about the same cost as non-diet food.   You just shop carefully and read every6 label looking for any gluten, wheat, lactose and a few others.

    In this topic of Restless legs syndrome there is a discussion calle RLS and diet.   There you will find some links to other institutions that have been supporting this diet in the US and UK,   Monash doesnt get a link because they have started to charge AUD10 fror a book and an App for your late modern smartphone.

    I recomend you get help from a dietician who has heard of FODMAP to help you with the diet.    Once I found some foods I could eat and sleep with I have been too scared to get adventurous and really try to expand my diet.

    I think I'm scared that if I eat too much off the diet it might stop working.   I think it actually works the other way so that now the consequences of slipping off the diet for a single meal or even a day seem to be less severe than they used to be.

    So I recomend that you give it a few weeks.   Some people get a result the next day after starting the diet.    You might have difficulty in working out if you have RLS or effects of withdrawal from your drugs.   I have sciatica and sometimes I feel like the RLS is coming back but I think its the sciatica.    My doctor also told me that sciatica or arthritus pain can trigger RLS.  I thnk I have seen a few people on this forum report an association between the onsett of their RLS and some othe rinjury or condition like these.

    Good luck and let me know if you have any questions and I'll try to answer them

    Its not an investment in time or money.   You just invest in denying some trivial pleasures in life in the quest to never see 3am again!

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    • Posted

      Hi graham...thanks indeed for your reply...it is very interesting to me as several weeks ago I totally cut certain foods etc from my diet that had crept back in and had a week of up to 5 hours a night sleep...then for some reason the RLS kicked in again...I thought I had identified the source of the problem but it all reared its ugly head worse than ever...I`ve been mostly vegetarian for 20 years (due to stomach upset after being diagnosed with mild cirrhosis) and I am totally free of dairy products in my diet(soya milk/sunflower butter/no cheese etc)...I do eat fish ... no alcohol for 20 years (re cirrhosis) but I do smoke a bit and drink quite a bit of tea with sugar...this morning I slept from around 5.30am until 9.30am so am in a much better frame of mind even after just 4 hours...I`ll certainly be looking into your suggestions and will read up a little...many thanks to you.
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    • Posted

      ps to my above reply...I have also found on occasion that when gorging myslef on a high greens and broccoli intake with plain mashed potato and Quorn (myco-protein for vegetartians) that I also slept without any extreme RLS kicking or spasms for around a week or so each time ...then each time there has been a breakdown and back to square one with the sympotms...I just haven`t been able to fathom how RLS works aside from it is always there and ready to pounce...but I`m currently on the Ropinirole and although it is only early days for me with this treatment it seems to be helping...I have also read a report by a doctor (can`t remember where I found it) who believes that some RLS is caused by underlying disease such as lung damage...I have been diagnosed with COPD which is the obstruction of capilaries within the lung due to smoking...I know this is another vice I have to give up for my health but to be honest,the situation where I live is at times intolerable with huge overcrowding of family/babies involved too (they`ve nowhere to live) and along with my own ailments I find it difficult to motivate myself for yet another trial...not ideal I know and I have given up smoking for several years before but at present I just can`t find the wherewithal...for now I live minute by minute,day by day...Cheers.
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  • Posted

    Hi Miaperson

    Thanks for your reply.   Its interesting that you have found a connection between food and RLS.  Glad to hear that you have had a few hours sleep.

    Brocholli is one of the froods that you dont eat when you are on your exclusion diet.   I think this probably means that it is part of a food group that you can eat.   Which is good.

    A problem with the FODMAP diet is that the food you eat has nothing to do with "healthy" food   it is just food you can eat without annoying your ibs or perhaps, RLS.    For example onion and garlic are out which really hurts some people.   But it only hurts until you find that the diet works for you.  I have had minor doses of RLS lately and I think the cause is that I have een rewarding myself with a few squares of milk chocolate per day.    I know I dont tolerate lactose but there I go taking just a little because I am sure it wont be enough to cause a problem.   Fortunately I haven't heard that smoking is excluded by the diet.  For something sweet I now rely on crystallised ginger whh is FODMAP friendly although its obviously unhealthy with all the sugar.

    Read up about the diet and if you decide to take the plunge then stick to it asiduously  I have found that a small amount of banned substances is enough to waste a weeks good work.  For example in Australia potato chips (frys) are usually coated in flour to make them crispy.  You might reckon that wo9uldn't be enough to hurt you but it used to cost me two nights sleep.   At the golden arches in Aus the frys are gluten free.   If you are at a restaurant ask them to check their allergy table to see if that applies where you are.  Get your list of allowable foods

    There are a few anomolies on the lists.   Monash suggest there is a threshold for some foods.   I think an example is cherries.   Some places say cherries are OK but Monash say you are allowed 5 cherries.

    At first I discovered that bananas wer OK.   So I ate bananas for three meals a day and supper  -  easy and nutricious BUT too many and my RLS came back,   So to some extent you should be eating as much variety as you can find that are on your allowable list and in the supermarkets at this time of year. 

      Incidently I eat a lot of rice cakes with cheese or peanut butter.   Some cheeses are lactose free.  These are aged hard cheese or the soft cheeses like brie and Camembert.   I start every day with a mandarine or an orange and my one banana for the day.

    I hope the diet helps you


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    • Posted

      Hi graham and thanks again fro replying...one of your comments reminded me how one of the foodstuffs I have recently cut out is milk chocolate and after 2 days I had a 5 day period of RLS symptom free nights of up to 5 hours sleep...however,one day I was passing through our kitchen and took literally just 6 or 7 malteesers from a packet one of the kids had left on the side...thaqt night my RLS was as active as it had ever been with arms and legs going crazy...so,in short,yes,I`m aware of how just a small amount of what isn`t good for you can be very detrimental indeed...I`ve since left all chocolate stuffs out of my diet...it is  a long hard road we travel I guess...you`ve clearly had a lot of experience with experimenting your own diet and thanks for passing it on...I`ll let you know at some future date how things are progressing for me...I have also considered going to see a practitioner of Chinese herbs who I use3d to go to years ago when I first found I had cirrhosis (caused by Hep C,now eradicated) and my own experience of the chinese herbs is very good...it is something I am considering too...thanks again and good luck to you.
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