Hi, my name is Morny I've had RLS since I was about 13. It runs in the family, my mum suffered terribly as did her father. They were both born in Ireland and people used to call it crazy legs. Im 53 now and sick to death of never being able to just sit and relax. It affects so many aspects of my life, I have progressed to whole body RLS. I know this condition is not life threatening, but it messes with your mind, body and soul. I envy people who can just close their eyes and sleep. It must be bliss. Having RLS was bad enough but when I started getting it all over my body it really freaked me out. I kick out so violently, you know that feeling when you have no control, it's painful as well, a sharp sciatic pain. It's just getting worse with the years. Worse still now is apart from the the legs I have no control with my upper body and throw my arms around in the air and end up rolling my upper body back and forth but it doesn't help, it's just keeping momentum to try and almost appease your body into submission. it's just a little coping mechanism. I've been on Ropinarol for years. They were a life changing wonder tablet when I first got them. They changed my life, I got a new job after not working for years. I now have to take quadruple the original amount prescribed because my body is so used to them.
Would like to hear from other whole body sufferers and how you cope, also any advice you may have.
Best wishes.
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40yearsRLS
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40yearsrls, I am right there with you!! I could have written what you did exactly!!
I too have been on Ropinirole for years with the mg increasing and the effectiveness decreasing.
I have learned from this website that is known as augmentation and that is what I am dealing with right now!!
It is pure HELL and I am having a horrible time doing it but I have no choice because Ropinirole is not working for me anymore but my body is craving it I guess??
I am on the 13 day and I am down to 1/2 of a 0.5mg Ropinirole pill every 14 - 16 hours (yesterday & today)!!!! I am taking Tramadol 50 mg 2x a day and I also have taken colonzapam (Klonopin) 1mg at a time just to try to help me get by too...I had to withdrawal from that one years ago and it was horrible experience too!!
I write down every time I take a pill to keep track and I have no idea at this time what to expect next!!
This website is wonderful and you will hear from great people that will try to help you here!!
Best of luck to you too and all we can do is stick together on this and try to survive it!!
Sunshine458
Oh man, i agree with everything you say here! It is like an alien has taken over. I call it “the Devil in my legs”.
Unfortunately, I did get a firsthand experience of losing all control of the body back in 2010. This was a freaky time, as I had no idea what was happening to me. The weirdest thing was regaining all control several weeks later, with nothing else happening until being diagnosed with RLS in 2015. Although I get RLS primarily in my legs, you have my utmost empathy. Sorry I can’t offer any concrete advice, but I definitely understand.
Get off of the Ropinerole!!!! I too have familial restless leg (thanks Dad) and was put on Ropinerole. It was amazing at the beginning and I could finally sleep. Then over a year my symptoms seemed to become worse. I had never really had daytime symptoms or Rls in my arms and gradually I had both. It was so painful and mentally I almost cracked. It got to the point that I couldn’t even sit for ten minutes without being in agony. I kept telling my doctor something wasn’t right and he just prescribed me higher doses of the Ropinerole and added Cymbalta which helped moderately. I finally found a specialist that immediately said I was experiencing augmentation which is basically where the drug starts to cause the problem it’s supposed to fix. Coming off of the Ropinerole was a friggin nightmare but my pain is a bazillion Times better. No more day time symptoms, and my night time symptoms are less. I am taking gabapentin which is helping and quite honestly i’m Still kind of a mess with medication and now trying to get off of all the meds the doctor put me on BUT I can be a mess if I can sit and rest sometimes...it makes all the difference.
Yep I'm with you too. I could have written that myself. I'm 64 had it since childhood. diagnosed at 48. I take madopar for the pain and Sifrol for the symptoms. It's now in the whole body. Sux hey. Those meds work 100% no pain and no symptoms. Try to take my Sifrol off me and I will kill you.
Wow, thank you all so much for your replies, it's given me a lot to consider, especially trying to get of off my meds and trying something else, this is an amazing website for getting advice and venting a bit of anger when you just become so emotionally exhausted from the pain and sleeplessness. I live in the UK and I don't know a single person apart from my lovely mum who passed away 6 years ago that suffers from this horrendous condition. My work colleagues think it's hilarious when I cant sit still, and my bus journey home from work is a nightmare with people staring at me kicking and flaying about. Oh well, at least I get a whole seat to myself. 😁
I can only imagine what you are going thru, and I'm sorry. I've had a relatively mild case over the last 40 years, only progressing to the point of needing medication about 4 years ago. Began taking Rope about 2 yrs ago, and thought I had won the lottery because I had "normal" sleep. But of course it didn't last and I increased the dosage, several times and the symptoms got worse. Since I am denser than most it took me that long to figure out that I was possibly augmenting. It was a leap of faith to cut back on the dosage since it "seemed" to be helping. Going off was hellish and took months, which included relapses. But, life is now good. I still take gabapentin, and an opioid . I know RLS is a cruel mistress, and I don't know how long if it will return, but I do have a newfound appreciation for life. I do wish you the very best.
Hi Morny! I know how you feel, but I have to say that your restless body syndrome is much worse than mine. It doesn’t last for more than 5 hours. I’ve found that taking a migraine medicine seems to help, and shortens the duration. I take Ergotamine, and it usually stops within a half hour or so. During the episode I sit on the edge of my bed and just rock back and forth. But like I said, yours is much worse. Mine seems to be progressing from restless leg, to the whole body over the past few months.
Good luck and best wishes. Hang in there and don’t give up. I’ll be praying for you!
Hi Morny as said already, phone doctors Monday morning and get them to start towean you off ropinerol asap, dont agree to trying pramipexole or any other dopamine antagonists as you will still be in the same boat.
I went on to 300mg of tramadol a few months ago and have had 0 attacks since. All thanks to advice on here!
Yes, west London. I've had tramadol prescribed to me before for other health issues, unfortunately it didn't help with the RLS. I'm scared to come of the Ropinarole at the moment because I'm already in deep s**t at work for time off sick. I've got some holiday due in June so am going to start researching into alternative meds that have been suggested here.
I am in Essex, I am sorry that your employers don't have better understanding. I have ME too and go online to the optimum health clinic. They teach EFT which helps with RLS too. If you ever need to offload, I am always here.
Sorry I've been slow to pick up all the replies on here, I had no idea people had died from addiction. There is so much to look into with other people's knowledge, so thank you, I'll follow up on that.
Hi madlegs. You are right about the msg (also called chinese restaurant syndrome. ) I learned years ago that I felt bad after eating chinese. But what I didn't learn until much later is that some chinese restaurants advertise that they are msg-free. Unless they make ALL their sauces from scratch-which I doubt-there is no such thing as an msg-free chinese restaurant. The first sauce/spice/ingredient they buy ready-made (ie Hoisin sauce etc.) will contaminate their food with msg. For me, I just had to completely eliminate chinese food from my life. BTW for years a very popular spice here in the US was Accent. It's still sold but it used to be part of many recipes saying it 'enhances the flavor'. Accent is just a brand name for msg (monosodium glutamate). Take care. irina1975
Thanks - many seasoning powders have msg- but don't state the fact. I got an " Old Bay" tin years ago and could never understand why I reacted so strongly until someone on here told me it had the dreaded msg.
It's in a lot of foods. Over here in the US we have all sorts of fast food chicken drive thrus. I don't eat a lot of fast food now but when I did my favorite was KFC (Kentucky Fried Chicken.) Didn't feel too good later in the day but it sure tasted good. Some years later my sister got a cookbook that had recipes that were close to popular fast food. Guess what was (and still is) in the KFC chicken? MSG. It's one of their 'secret spices'. It does enhance flavor but you don't always see it onlabels. Apparently it just has to appear in the ingredient list as 'spices'. Don't you just love 'truth in advertising?' Take care. irina1975
I am totally with you, my father had it really badly and his doctor told him there was no such thing as restless legs! I now have it in my whole body and to be honest, I sometimes wonder if it is worth carrying on. I had the same problem with ropinirole and am now on Pramipexole and have just started Baclofen.
Hi angels reign, I'm sorry your father not only had rls but also a doctor that possibly did more harm than good. I remember not too many years ago when doctors didn't believe there were two diseases called Chronic Fatigue Syndrome and Fibromyalgia. irina1975
I do have them both but don't take any meds. Lots of epsom salts soaks and just dealing with discomfort. My family is in Florida but I do have a supportive friend here- Jacob. He's better than family for me. And I have a good combo of docs so I consider I have a supportive treatment team for the most part. Since I worked as a nurse for so long I'm used to taking care of myself and trust my decisions often more than anyone else. All my life I've had anxiety and stress as companions and also was something of a perfectionist. I've tried to let a lot of that go. I have a theory that most of us that have nervous system related problems have difficulty not trying to do everything perfectly. My sister is clean and organized in her work but has a gold medal in untidiness. Dishes in the sink overnight don't bother her whereas I can't sleep. I envy her ability to sit back and relax. LOL. And mydaughter doesn't even use an address book/day planner-just uses little pieces of paper to write stuff down. I wonder how many of us with rls/fibro/chronic fatigue have worn out our nervous systems trying to get things done exactly right? I'm also lucky as I'm retired and my schedule is myown. Makes everything easier. One thing I rarely do is make dr appts too early in the day. I try for afternoon because it takes me awhile to get going in the morn. irina1975
Hello Irina, Your theory about personality types for CFS is interesting. The Optimum Health Clinic talks a lot about that- especially perfectionists! I am the "helping type" I used to manage a care home and while I loved my work, it was very exhausting. I haven't seen any of my family in 4 years, but I have a wonderful supportive partner of 20 years and I couldn't manage without him. I am glad you have that too.
Hi I know how you feel I have had it I've 30 years and was just in legs I say it's like being tourchard no one could never understand or even think about saying I know how you feel
I know get it in my arms and face I could not believe it when it started in my arms years ago now only a couple of times I had it in my face img doctor put me on quinine sulphate 200mg they don't stop it
Anyway one day after being awake with this terrible thing my daughter look up on people with it and if they had found things that help
Now I know this may sound mad but I use it and it does help
My daughter read out about a man who had it bad for most of his life someone told him to try ivory soap put it under you pillow unwrapped the one I got was imperial leather now it has helped it don't stop it all together but does help so much so I don't go away without it
On holiday to Spain once the maid must have thought I was mad every time our room was done the bed changed on the table was the bar of soap I put it back in pillow case and when maid done next clean back on table it went
I just hope and pray that very soon they find something that will stop this awful thing from happening
That reminds me of my mum putting magnets all over my legs to try and draw the pain out. So sweet of your daughter to help her mum. There are a lot of weird and wonderful things we try to get relief, if it helps, go for it! Best wishes x
I'm so sorry. I can totally relate to what you are saying. I do the same kinds of things to try to cope. In order to try to stay in bed, I would raise my arms and just keep moving them and rock back and forth on my side. Sometimes I would punch the air as hard as I could, but usually I ended up getting up anyway. The uncontrolled jerking and flailing is what gets me the most. I haven't really found anything that helps a lot when it gets that bad. I just ride it out. I wish I had better advice, but you are not alone in this.
I just joined this last week, but have had RLS for 30 years. The last ten have been most horrible- found out all because of ropinerole for so long. I went off cold turkey with nothing. It was the worst ever for three days. However, I actually went to a movie last night for the first time without pain. It was heavenly. Don’t do cold turkey without a dr. I’d reduced to 2mg if ropinerole split into 2 doses. I’m supposed to start Gabapentin but not sure I want to.. need to read more about that.
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