HI,i suffer badly with rls I'm on tablets from my doctor but they soon stop working and the side effects are awful the ones I'm using now are called ropinirole and they are the third lot he has put me on so does anyone know how to stop this awful ailment i have even bought a machine called mind spa doesn't work
either so I'm at my wits end so please if anyone has any ideas i would be grateful
Hi Desperate Dan, I know only too well how you feel, it drives me to the point of tears, I don't know what to do with myself, once it starts and I am sitting down, I immediately get up and start walking away. I immediately take 2 x Ripinirole 1mg right away, and a Tramadol 50mg and just keep busy for a while, it seems to take your mind of it, go and walk around, walk upstairs, just do something, I have been know to walk up and down reading a book, I find my legs will jump and spasm independently and jerk as though they have a mind of their own, another thing I have discovered and this may seem very strange, is that mine starts each time I eat, I have had 6 back Op's and two of them went through my stomach area and I was turned over and back on several ocassions, whether or not their was some damage to some of my Internal Organs I do not know, but I sit down to have my lunch, Rice Cakes, with a little peanut butter, cheese, jam, and lemon curd, nothing very interesting, and as soon as I start eating, I can guarantee I start getting a Widgeyleg, sometimes left sometimes right, I then start to pass wind, and I think here we go, I need the toilet, so I go to the toilet, pass a motion, and just like magic the Widgeyleg seems to disappear, so whether or not their is a connection for me with Widgeylegs and Operation, I don,t know, but I have recently had a Half a Knee Replacement, and one of the things you have to do is 3 times a day is put a wet tea towel with a bag of peas on the knee, and I am not joking when I said, that with in seconds, I could feel my Widgeyleg starting, I was surprised, it has never happened before, it has got to be to do with the sensititivity of the nerves, as that can be the only explanation.
When I was in hospital because I was having so many problems, they gave me an additional drug to try, it is called (Oprymea) or Pramipexole o.26mg prolonged-release tablets. I take them at night, along with 3 Ripinirol, Co Danthrusate to help with the removal of execretion. as I am on Morphine as well, I also take several heavy duty tablets, also Tramadol 2 x 50mg and that does the trick, I can go to bed at 11 and don't move until 5 or 6am in the morning, feeling very good. It is a good deep and relaxed sleep. I then start my day, but I do not usually get Widgeylegs until lunchtime, or in the Evening if I have sat for a while due to the resting of the knee. it will start to twitch and just jump around on it's own, so before it gets too bad, I start walking around doing anything, most of the time the Dr,s recommend 1 Ripinirole, well I looked up Ripinirol and it is given to patients with Parkinsons, to help with the Involuntary movements or shakes, so they get quite a heafty dose, so what I do is take 2 on the onset of Widgeylegs, especially if it feeling nasty, if it still persists after about an hour, I take a Tramadol, and then I can feel myself beginning to relax, I then go and lay down for an hour and immediately go to sleep, I wake up refreshed, and then go for hours with out any problems at all, the like yourself I expect it comes out of the blue, so same routine, unless it is close to my bedtime, then I take my Concoction, and have a cuppa and get ready for bed, and by the time I have drunk my tea, finished my tea, I begin to feel like I am drunk, so that,s the time to get into bed and I,m gone. So I hope that this longwinded explanation and talking about myself and my medication will help you to manage your Restless Legs a little better, but you must try and move around as soon as you can unless you cannot for what ever reason, so if that is the case, 2 x Ripinirole and a Tramadol and that should do the job.
I am sorry this reply seems to be all about me, but it is the only way that I can explain what I do, and my thoughts, and my medication. I really do feel for you, as I have had it many years, and it drives me distraction, and I really wish Dr,s and Consultants would take it all more seriously, as it not something thatis easy to live with, I think the problem is that they do not or any of the other Medical people actually know what it is or what triggers it, or what will treat it, so we are palmed off with different tablets until we find the one that seems to do a sort of job.
More Investigation needs to be done in to Restless Leg Symptons, as I have known people "take there own lives" due to the continual burden of Restless Legs, and never getting any peace.
If ever you want to email, please feel free, I totally understand where you are coming from, but just try some of my ideas and see how you get on. Take Care, you are are not on your own, their are hundreds of us all suffering in different ways, and all have the same frustrations and not knowing what to do or turn too, but anyone who has Widgeylegs or arms, should just write down what they take, and how long it lasts, and if it works, and we could then all try it, if safe with out other med,s.
So Desperate Dan, you are not alone, hope I have been able to help, and sorry it has been sooooo long. Good Luck, and let me know how you are doing when convenient. You can email anytime.
Take Care, Widgeylegs.
Hya W many thanks for your reply i shall go and see my dr this week and ask for tramadol and see if that helps coz rockandroll don't do it alone (ropinorole) my i thought i had it bad but you have gone through a lot,but we battle on eh,so another day i do son hate taking tablets and the r and r also give me acid reflux which wakes me up so either i don't get to sleep the whole night through,many thanks Mal which is short for Malfunction bye
Widgeylegs, Perhaps you are correct when you connect an operation and the disturbance called RLS. Your personal story is the same as millions around the world and you are apologetic about personalization of the story, but it is a personal story for us all.
It is a genetic disorder that coincided with an operation. It was time for the gene to express itself or fail to express itself.
I have looked into my family history. I am one of the first generation of grandchildren. Both my grandmothers were having children at the same time I was born to their oldest son and daughter. I grew up with aunts and uncles the same age as me.
My mother had 9 sister and two adult brothers. Both the brothers and seven of her sisters, had RLS. There was some alcoholism and lots of prescription drug abuse trying to cope. One died in her 70's and the whispers were that she accidentally overdosed on ''pain'' med. I suspect she just couldn't take it any more.
I have on many occasions thought it would be simpler to do the same, but before I had this malady I had children and the legacy of suicide isn't one I will inflict upon them. If I did it, it would be permissible for them to follow me, when it kicks in around 50 yrs of age.
Hoping for a cure in my lifetime!
Windwalker
Hi i think i know were your coming from but there is only so much a body can take and of course the mind follows,since i retired 10 yrs ago its been one thing after another im not a winger but it wears you down
but as they say always someone worse off than you so we try to get on with it all,d/d
I do not know where you got imformation from about people taking there own lives I know it makes you feel like it But do you realy know someone
i was talking about me,sorry
Hi Beady3, When I wrote the comment if you look at the context in which it was meant, and it was not directed to anyone, as I had previously said, that it is nice to be able to talk freely about how I felt, and I was actually talking to Desperate Dan, and how I understood how he was feeling etc, and my comment in no way encouraged or gave anyone any thoughts about "taking their own lives" but in answer to your question Beady3 Yes I do know several people who have taken their own lives through Restless Leg Syndrome, when you are at the height of the disturbance, taken all the pills that you are able, pacing the floor, and try and sit down as you are tired and it is a waste of time, and you feel frustrated, alone, no=one really understands HOW IT FEELS and this happens days after days nights after night, you are physically & mentally tired, you have been to the Drs, and Consultants again, and got the same answer, try this , try that, no-one really know what is the best drug, or what causes it, Do you not think that all that is so NEGATIVE, and you are living this every day, that even the strongest of us, when we are tired, exhausted, no rest, relaxation, unable to live a normal life, sit and relax and read a book, go for a car journeyetc, that the idea of relieving this horrible pain, and jerking, and constant niggle is to remove yourself from this, I can certainly understand why they did it, and can certainly say that as strong as I am and having survived Cancer, live with M.S. had 6 back operations, and now one half a knee replacement, so I am a very strong and determined person, even I have got to the stage, where I cannot stand the constant attack of Restless Legs, so when these friends have taken their pain away, it was their choice, and who are we to question Why . I understand, and would not of answered your message, as my message was not to you, but it was your attitude what I found surprising, so I felt I should verify my comment,
Widgeylegs.
Sorry to hear about your suffering. What are the other two lots that your doctor has put you on? Ropinirole is a dopamine agonist. You can try another DA, such as Mirapex, but I suspect you have already tried other DA's. I am currently shifting to gabapentin, specifically Horizant (gabapentin encarbil) because I have issues of augmentation and impulse control on DA's. Gabapentin, neurontin, and lyrica are other types of gabapentin meds. My long term plan is to add back in a low dose of Mirapex in about 3 months, after my dopamine receptors have reset. I might also add an opioid if this combo or Horizant alone doesn't work well enough. I am already using Ultram (tramadol) to help me transition off Mirapex. In the transition, which can last anywhere from 4 - 5 day s to 4 - 5 weeks is difficult, since your symptoms worsen during this period. Ultram is not a true opioid and doctors are more willing to prescribe this drug that they are with methadone or oxycodone. Lastly, are you a member of the RLS Organization. Their website is a trove of good information on treatment options. I have been reading and posting on their bulletin board. I recommend going to rls.org to check them out. There is more action on RLS on their bulletin board than on this one.
Good luck,
Richard
HI,i found a website a couple of weeks ago a doc who showed a very simple exercise which is standing on the balls of your feet for the count of 2 + 20 it loosens your calfs as i have cerabella ataxia and mine where always very tight bye for now d/d
I use Neupro Patches which contain Rotigitine, and they certainly seem to work most of the time. I have been on them now for several months and so far so good.. Whether they will work in another several months, we shall see. I still have the odd bad night but generally they are the only ones that seem to work at all on me.
Have your doctor prescribe TRAMADOL. I have been using it for about 3 1/2 yrs. now, no side effects and works for most people, not all. Good luck.
Is one of the drugs you have tried, Pramipexole, otherwise known as Mirapex, Mirapexin, syfrol and others.
It is another Dopamine agonist like Ropinirole but seems from comments herein to be the best. I've been using it for over 6 years now. However if you stop taking it you get bad withdrawal symptoms.
Hope you soon find something hat suits you.
Yes we all know what you are going through,when your legs start get up and do something I find a bath realy helps any time of the day, I am on Tramodol they are good but you still get bad times there is no compleat cure so it's just keep trying ,I have had all the other Dophamine tabs and I found augmentation the worst thing of all which is what you get from those tabs ,when you go to the docs go armed with rls news they are not very up on it,good luck and keep going x
Have you done the obvious things like cut out caffeine?
I have also cut out alcohol. What pleasures are left, you might ask? However lack of RLS is a much better high!
Recently, I think I also have a link between RLS and sugar (=sugar rush or hyperactivity in children?) so I have significantly reduced that. I THINK this all helps but it is difficult to be certain.
All this wasn't as difficult as you might think, and even if it doesn't work, it is better for your health.
As someone else has said, distraction is also a good tactic. Find something you are interested in that will occupy you intensively mentally and physically and do it. Just reading or watching TV on its own isn't good enough, you need to be doing something also - it doesn't have to be very physical, just an activity of some sort. I do all sorts of things in the early hours.
I also find laying on my stomach so I can wave my legs about helps
As has already been said, there isn't a magic bullet, and all the above it what helps for me (sometimes).
Hi I have suffered with rls for 30 yrs but lately it has been dire! Can't take the tablets so am on skin patches but suffering augmentation. One thing I have found which gives some help is magnesium spray which you can buy at the health food shop. Hope this is. Helpful to you
Hi D have tried the spray doesn't seem to work for me just makes my legs sticky got it from H and B
Hi, sorry to hear things are bad - I take Ropinirole 2mg at 2pm and 2mg around 8.30pm but I take them with some Tramadol- 100mg. This is presently working for me. I also take Clonazepam 500mcg before bed to help sleep. My Consultant put me on these tablets. If you have not seen a consultant it's a good idea to ask to see one.
Lots of us know how you are feeling - it may help to know you are not alone- best wishes.
Hya,thanks for your help I'm going to see my Dr this week and i shall ask about seeing a consultant thanks again,take care Mal
Thanks Restless it does help. It can feel very lonely just me and my restless legs at night!
Hi DisneS
You can be sure that if you are wandering around at night there are loads of us with you. I usually find something to do even if it's 3am - I've been known to move furniture around , do a bit of cleaning and of course there is always the ironing. No it's not funny but taking your mind off the legs does help. Hope you get some real relief soon.
What dose of the Ropinerole are you taking..? You could be having augmentation, which means the Ropinerole stops working and starts to make your symptoms worse. If you are having augmentation, the only solution is for you to come off that med and try something else. Please please, do not let your doctor up the dose, it would only help for a while then it will stop again and your symptoms will become worse again. You can search in the search box for Augmentation, you will see alot of posts on this subject and good for education on why not to up doses on any of the dopamine meds. Good luck..
Hi Elisse i started on 1mg now on 2mg and i shall see my doc this week and ask for dopamine that makes sense really coz the brain is not producing it hence the rls thanks sees ya
You are already taking dopamine as that is what the Ropinerole is. The 2mg dose of Ropinerole is the highest dose to take, so please do not let your doctor increase that dose. If its not working then you need to change meds. There are other class of RLS meds that work for RLS which are not dopamine meds. Either look at the meds available on the rls-uk.org site. Or at rlshelp.org and the treatment page gives a list of meds available for RLS. The later site is a USA based site, but a lot of us in the UK or any other country can use it.
Hi, Sorry you are having such a bad time. I have RLS and have noticed considerable ease and less occurrences since starting taking Magnesium supplements about 6 weeks ago. Don't know if will help you but i tried Tramadol and i was pretty much drugged out most of the time and could not cope with young family etc; so now i do some stretching, walking, take anti depressants, 50/300 co-codamol at night and muscle relaxants. I am thankfully able to cope at moment. Take care
HYA,Jean and thanks i am going to see my Dr this week armed with loads of info so hope i can get on top of all this,Mal
Everyone has the same questions, and none has the answer. I am fortunate to have had the best the world has to offer, when it comes to doctors, i,e. Northwestern University Memorial Hospital and Mayo Clinic, both in Rochester MN and Phoenix AZ. I have suffered greatly for 40 years and at first none of the doctors wanted to do anything.
When I'd complain, I'd get this blank stare and a shoulder schrugg.
One day someone stumbled onto the connection of dopamine and RLS, so the more daring doctors started to prescribe ''off label'' drugs for us. They haven't done much more than stop us from suicide or drug addiction and alcoholism.
We still suffer in the dark of the night and all the drugs have done is dull our senses, make our memories shorter, take away our sexuality, and make us become unconscious long enough to sleep 3 or 4 hours a night. Welcome to my world, albeit a reluctant welcome. One I wish would go away. Little or no research is or has been done for 10% of the world population. It is akin to seizures. A small area of our brain that chemist know little about and a brain surgeon wouldn't touch for fear of the unknown.
My wish is that a guy like Dr Ben Carson, ( he is a noted brain surgeon from Johns Hopkins University), who is running for U.S. president, would go after the neurological cause of RLS and help more people than his futile run for a job nobody has done well since Ronald Reagan had the job.
He probably gets more funding for his running for US president, than funding for research for RLS. Finding the "cure" for RLS is complex, probably more so than running for President. !! 
There are still no cures for many diseases in this world. 
I am 77 years old and I have suffered with RLS since I was 40 years old. It has been an absolute nightmare. I didn't go to the doctor because I couldn't explain what was wrong with me. I had many times when I spend nights going without any sleep and just walking the floor. Since then I have been on many medications. Some would work for a little while and then my legs would actually get worse.
Just in the last few weeks I have found something that works for me. I take 2 Mirapex (1MG Tablets) and 1 Neurontin (300 MG Capsules) and 1 Vicodin. I take these about 2 hours before bedtime. I sometimes take 25 MG of Xanax.
I know this is a lot of medication but I was having RLS all day long. I have severe RLS in my legs, arms, and chest. I was getting to the point I couldn't take it anymore. I tried everything and finally found a mix that works for me.
My husband has Alzheimer's and I am always exhausted from dealing with him. The more tired you get the worse your RLS gets. I know Tramadol works too in place of Vicodin. Right now I am afraid to switch but plan on it soon. GOOD LUCK
Hi Desperate Dan, I am glad that I was able to help, the two tablets I recommend are good, the Opymremea or whatever it was called and Tramadol at least 2 at night should give you a good night, also take 3 Ripinirol that should do the trick. Drink plenty of what you like except the Real Thing. I don't know if you work, but I find with my Ripinirole, I take them regularly not just when I need them and yesterday was the first day ever I have hot had Widgeylegs. Wow. I do my pills everyday, and I have 4 pots, Morning next day, lunchtime today, eve pills today and late night. When I do my pills now, When I do my night ones I use my usual tabs, but now I put in 3 Ripinirol, I take them about 10.10.30 with the Ripinirole I take 2 Tramadol's I have another whole selection of others things which you would not possibly get so I won't even mention them, now their is quite a sedatative reaction between the 2 sets of Tabs so beware that you may come over a bit like you are feel tipsy, time for bed. So hopefully you will get a goods night sleep. You should wake up pretty refreshed in the morn, so you will have to let me know how you get on.
The rest of the day, Mornings have none, lunch if not working 2 Ripinirole and I Tramadole, then you will sleep for while, which is good and try lying down as it stretches all the nerves and tendons, and relaxes the muscles too. Eve pills on my usual pills and as above the Eve ones are the crucial, so you make a routine, and it is surprising how well it works. If you need to put one in your Morning pot, don't forget you had 3 the night before, so be careful. If you slept right through until 8 then you could have One Rip to just take as prevention, and then be busy for as long as possible. When R.Legs start, get up and start moving around, distraction technique and see if you can just work it away, sometimes it will. Hope this helps, I am sure there will be some people who would think that I am taking more Ripinirol than I should but at 1mg spread over 24hrs, if it makes me last and survive the day, then I would say, I will do what I have to do, to have some sort of life and quality. Take Care.Widgeylegs
Desperate Dan,
I'm sorry to hear of your troubles. Rest assured (no pun intended) you will find relief, but it is often through trial and error - remember, this is a condition for which there is no test, thus your doc can't look at test results and have an answer. So the best you can do to describe your symptoms, the better. That being said, please be sure to request a listing of all side effects of any meds - particularly dopamine agonists - and know what issues you could run into.
Widgeylegs, how many mgs of Ropinerol are you taking per day? As some in here know, I've had some very nasty side effects once I got into the "therapuic" range (above 4mg) for Parkinson's, which is above the max dose for RLS. Let me know.
Jerry
Hi,at present I'm taking 2 mg of ropinorole and magnesium oil spray which I'm not sure if it does much
Oh and the side effects I'm having are feeling queasy and not much of an appertite
STILL NEED HELP
HELP Please
Gabapentin 
my RLS is ruining my life 
