Restless Legs Syndrome

RLS: I saw the programme on Sky Channel 5 and was appalled at the misery people had to endure. There IS treatment for RLS from which I suffer and 8 years ago my GP looked it up in the MIMS (medical term for directory). He found the name of the treatment I'd read about in a magazine. For all those poor people, the treatment is ROPINIROLE. Please go to your GPs and ask for this as once you start taking it your lives will change drastically! I could not be without it and only have to take 2x2mg tablets at night to be able to sleep. Without them, I don't think I could go on. The desperation I witnessed in that program upset me so much and after getting in touch with Sky, they eventually let me know about your group.

PLEASE get this treatment as soon as you can to change your lives and start living again.

Molly.

27 Replies

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  • "Jesus wept"

  • :) +1

  • Two words from Madlegs 1 was all it took to make my day!

    Thank you for cheering me up!

  • Hi Molly,

    A lot of people on this site have used ropinirole and similar dopamine agonists and, like you, thought it was a miracle.

    Sadly, the dopamine agonists stop working for the vast majority of people after a few years and symptoms start to get worse and more intense and move to other parts of the body like the arms and trunk. This is Augmentation and a great many people on here have had it and have had to go through withdrawal and find different treatments.

    You are on the highest recommended dose for ropinirole and I am pleased it is still working for you. Long may it continue,

    Jools

  • I am glad you saw the program. BUT, there are many people here who have tried every med on the books, and off the books. Ropinerole changed my life, it made me violently ill and did not help my RLS one bit. I know hundreds of people who cannot take the dopamine meds. One thing to remember is that NO ONE med works for all RLSer's. Would be nice if there was one med that worked, but it just is not so. Having said that, I am glad it works for you. But, we have to be careful recommending meds. We can say what works for US, or the meds one should not take for various reasons, like the ones that can trigger RLS. Dopamine meds do not help even half of us.

  • Yes I can verify this. I've suffered with RLS for many years and tried just about every treatment in the book including Repinerol but nothing works. At the moment I take Cocodamol before bed and Gababpentin which helps a bit but still doesn't stop it completely. It's an awful condition and very hard to deal with. Xx

  • Sorry, I was a bit stupid to think ropinirole is the beginning and end of all cures! It happens when one has been lucky enough to find it works. (Fools rush in . . .) However, I just wish it worked for all.

    Molly.

  • Another issue is the dose. You are already past the recommended therapeutic dose. As long as you do not up it, you may be ok, but keep in mind more is not better. You are 2 mgs over the newest recommended dose for RLS, just so you know. So, if it stops working for you, it will mean you are going into augmentation. For your own information, you should look at the augmentation posts on here by searching in the search box. You will see this class of meds is discussed daily and that lots of people have trouble with them. So, I hope it keeps working for you. :) irlssg.org This a group of international experts and specialists and they pretty much set the parameters of safe dopamine dosing. Dopamine withdrawal is a real thing, DAWS, so you should at least read up on it, so you stay informed. We need to know both sides of it so we can know what is going on with us, if it stops working for you, and/or your RLS ramps up for seemingly no reason. Too high of a dose eventually may actually make RLS worse, and do the opposite of what we need it to do.

  • I hear you and thank you for the info.

  • Hi,

    I am glad rapinirole working for you but I strongly disagree you suggesting this for people. DA treatments could be good with RLS but has so many side effects too!

    Also we are not doctors and what works for you might not work for others.

    Glad you find what it works for you though.

    B.

  • Sorry to be so stupid, rushing in with what I thought was a miracle cure!

  • So glad it eases your restless legs but for me it drastically changed my life in the most unpleasant ways. Hope it keeps working for you but do note night dancer's advice.

  • So sorry it didn't work for you. Hopefully, you will find something that does and soon. It is such a maddening disease that I'm sure people get suicidal. Initially, I went without a night's sleep for 6 months before asking the first GP for treatment but the second one found ropinirole and I have not (yet) looked back.

    PeNy

  • Thank you for your reply. I am one of the lucky ones as I found dihydrocodeine and that works to relieve all symptoms most of the time. Like most people, there are unexplainable nights when my legs decide to do their own thing and I have to up the dose for those nights but I always try my normal dose the next day as I want to keep to the lowest dose possible for as long as possible . I live in dread that one day they will not work as I have been prescribed most of the alternatives and ,apart from opiates, they do not work for me.

  • So glad you have found such relief. I will keep that

    treatment in mind in case mine fails me one day.

    PeNy

  • Hi Molly and welcome to the group. It is great that you went to the trouble of getting in touch with the TV people and that you felt so passionately about wanting to let other sufferers know of your success with Ropinerole.

    However some people including myself can't tolerate Ropinerole due to side effects and for others it simply doesn't work. Some people do very well on it for many years. I am glad that it is working so well for you

    However Ropinerole especially at high doses can lead to a condition know as augmentation. If you click on my name you will see a post I did which explains all about augmentation. The higher the dose of Ropinerole the greater the risk of augmentation. This is why the experts have now lowered the daily recommended daily dose to 2mg absolute tops.

    Can you tell me did you start at a lower dose or gradually increase as the lower dose didn't work so well? This is a very important question.

    Youhave found yourself a great support group here

    Pippins2 x

  • Hi Pippins,

    Many thanks for the information about augmentation. I started on 1mg tabs and, together with magnets, did well but am on 2m twice a night now. Hopefully it won't get worse. But I will keep your words in mind. The first GP I asked for help told me it was all in my mind!

    I hope he has himself found out to the contrary!

    Molly.

  • I can't tolerate Ropinirople but am getting on ok with Neupro. But the reason I am writing is about the programme itself and the man thrashing around with PLMD. I know I move around a lot but thought I would just share that this morning I woke with my leg stuck between my bed and my wife's bed and have twisted my knee. I am waiting for my wife to surface to see if she can shed some light on what happened!

  • Hi Martino,

    Glad Neupro helps. Hope you won't be thrashing about with your legs any more or that you won't kick your wife by mistake!! This is a miserable condition which not many people understand and some doctors don't take seriously.

    PeNy,

  • The beds are zip linked but weren't zipped if that makes sense. My wife wasn't aware of what I had done so with some difficulty I showed her how my leg got between the beds. I think I was trying to kick her!

  • Medication may help some people, but most of the time, it is just treating the symptom, not curing the cause. Most people find that RLS is worse last thing at night. And least first thing in the morning. The answer it obvious. It's something you do during the day, but not while you are sleeping. The most obvious thing is eating. Many people find that some foods are triggers. The problem is that most people's diet these days is highly varied, and finding which ones is difficult when there are multiple triggers, however diligence and perseverance does pay off. Without side effects, except perhaps in freedom of choice, and problems for the cook of the house.

  • I've been on Ropinirole for nearly 20 years and you need to be careful while taking it because at some point you will find it is not as effective as it was in the beginning and you will go into augmentation (the medication makes it worse). The doctors as Mayo claim that if you are getting 75% effectiveness with this medication that is the most they expect and eventually it will begin to drop and not work at all. So it's good to find alternative therapies to assist you. I was up to 3 mg a day and now have reduced to 1.5 mg and ready to step down. I use a product called Quiet Legs, a supplement I order from the UK and Craniosacral therapy.

  • Hopefully I will not live too long as I don't know how I would go on without the ropinirole! But I will make a note of Quiet Legs just in

    case! Glad it has been so successful for your RLS.

    Molly.

  • Molly, I can totally relate to what you say but it is such a sad thing to read. When I was on a dopamine agonist (in my case mirapexin) I felt the same way. I thought that if I had to come off mirapexin and return to my pre treatment rls my life would not be worth living. However, I was unfortunately compelled to stop it last year.

    The good news is there are all sorts of other treatments. Opioids (tramadol in the UK, methadone in the States, hydro-contin and OxyContin everywhere) work really well for many, many people. And I found there is a certain reckless frisson to taking such high octane drugs (I did struggle with the concept of being on them for life but I know I'm going to be on something for my rls for the duration).

    There is also a slow release version of ropinerole called neupro which can be very effective and is less likely to cause augmentation. Once I got the pramipexole out of my system my consultant was happy to prescribe neupro.

    There are the anti-convulsants, pregabalin and gabapentin which are very effective for some - on their own or in conjunction with other meds.

    I have also got a Relaxis pad - eye-wateringly expensive but a non-invasive treatment that works well for me. There is also the dark side (if you live on this side of the Atlantic) of Kratom and Cannabis which I have enjoyed experimenting with - in my 'respectable' years - I never would have anticipated finding myself messing around with illegal drugs. Rls really takes you on a journey.

    I have learned a lot about myself and my condition since I had to come off mirapexin. I also discovered this forum which is a fantastic addition to my life. I do have a life, family, friends, occupation etc but at times I feel set apart from others by my rls because it is so poorly understood by non-sufferers. It has been such a bonus to find this forum and know that everyone on here totally understands what it is like to suffer from rls.

    It may be that if you treat it with caution, ropinerole will grant you many years of relief. I really hope so. As your dose is quite high, do watch out for some of the side effects - compulsive behaviour is a very real problem (gambling, shopping, internet shopping, other internet misuse). I didn't realize until I stopped the pramipexole that I had developed a dreadful shopping compulsion (it stopped immediately I got off the drug).

    Sorry to rabbit on so long. I feel you got a rough time of it in this thread when you were acting from the best possible motivation.

  • Thank you so much for you full reply to my rather arrogant assertion that I alone had the right treatment. Humble apologies. Reading all the replies made me me realize how prevalent is RLS and it really is torture at times.

    I have cut down my dosage to 2 x 2mg now and find it works well D.V. I just hope it stays that way.

    Molly

  • thank you for this information,i am now getting over a week of misery,i have suffered for years with RLS but not like this time.the pharmacy are now saying they are having trouble with getting it.my doc said there is no alternitive . thanks frances

  • Another ignorant idiot- the doctor- not you!😢

    There are loads of alternatives.

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