RLS for life

Just a story really that is driving me mad! I had 2 discs replaced in my neck. Following 3 months off work and 3 months lost to painkillers (I was in a happy place then!!!!) I got these weird cramps. It took about another 3 months of visits to my neurosurgeon before he believed that through my internet research this could be RLS. So I saw a neurologist who also didn't believe me but treated me. Lo and behold things improved. Then things got a bit worse so I hunted out another neurologist from a London hospital who was amazing. 2mg of ropinirole a night and 3 years of freedom... Then it returns with a vengeance! I am lucky enough that I tried a new hypnosis technique - by Paul McKenna. It worked incredibly well, I felt the RLS starting then it would subside. That was great for a few months but then wore off. (I am seeing Paul again in a few weeks so will ask him about the technique used as it was amazing and hopefully try again!) however now knackered through lack of sleep, tramadol is the only thing to let me sleep. It affects my legs arms and torso now. No-one can imagine how bad it is and how desperate you feel! I have flung my legs and arms around and tried everything. I am not keen on taking tramadol regular as it can be very addictive and the effectiveness wears off. So now I read about augmentation! A visit to my GP or neurologist calls I think and another few weeks of teaching them about RLS providing information. As a healthcare professional myself I cannot believe there is not more help out there and better education for the primary care providers. I speak to many patients every week who have RLS, some treated well some not. Some don't even know that's what they had! So that's my story so far! Ps my neurosurgeon didn't believe that the disc replacements caused this but there are numerous cases of this. However now knowing what a bad case of RLS is like I do realise I had it previously but not as bad. Also my Dad has it mildly.

26 Replies

  • Hi Mojave, headaches only related to the neck pain which went, but I have had some unexplained bad headaches recently, not migraine bad, just a headache, no specific location, if forced I would say temporally. Other meds... Ezetimibe, pravastatin, losartan, verapamil, fenofibrate and the 2mg ropinirole at night. Irregular heartbeat I had prior to op, cardiologist says I have an accessory pathway in heart.

  • I totally understand what you are going through. This is the worse thing I have ever had. It not only affects your legs but I get these muscle spasms in my arms and chest and unable to sleep. I have to get up, but of course you cannot sleep and walk. I do get relief from 8mg XL Ropinirole which I take at 1pm each day, but sometimes for no explainable reason, it doesn't work so good on other days.

  • 8mg that's quite high isn't it? I have heard the xl version does work better in some cases being that it is slow release. I have also always had it in arms and chest which is why initially no-one believed me as it's called restless LEG syndrome!! My neurologist now calls it a restless type syndrome. I personally think we need to get away from calling it RLS and call it WES or WED.

  • Hi there

    Sounds like my life and I don't like it and totally understand where you are.

    I use morphine to num my body and then with all the other RLS meds I can normally sleep and be 'around' during the day. I can still feel it all running around my body but its not at the forefront so I can cope.

    It does augment at times and I just ease back on some of the meds and 'hey ho' all is OK. Of course I have to build up again over time so its a circle however I can function to a degree so I choose this method.



  • As mentioned before on this site i take Tramadol after augmentation occurs connected to my prescription of 1mg Ropinirole. This I feel resets the receptors and after about 10 days prescribing myself with 50mg of Tramadol the 1mg of Ropinirole starts to work again. I am not sure how long I can keep the dosage at this level but fingers crossed. I have been following this route since Oct 2013

  • hi first time i have put any comments on I have RLS for many years.I take pramipexole every night.When it first started doctor gave me it for one month .Not long after it was back so bad i was nearly screaming told i should not have stopped i will be on it for life.then i had 2 discs shaved at the bottom of my spine because of sciatica down both legs.i also have rhymatoid arthritis anyone else think there could a connection a connection here..

  • HI yes thanks at the moment but it has in the past then stopped and had to up the dose.I am on 6 tabs a night ithink that is high as i can go

  • Hi beeckey, I personally believe that spinal problems can aggravate RLS. if I get tension in my neck the RLS is worse so make of that what you will. I certainly didn't have it anywhere near as bad prior to surgery

  • I have just been prescribed Pramipexole. At last I had a Dr who listened to me! So fed up of being told I was getting cramps (like I don't know what cramp is!). Been prescribed quinine sulphate and folic acid which I knew would not resolve the problem, but Dr seemed to think she knew that my "cramps" would respond to them. Thank God for the Dr today who LISTENED. Hopefully these meds will work.

  • I sort of presumed that you might have to withdraw slowly as it is a drug that you increase weekly! I have already had to withdraw from morphine which I was taking for pain. The increased rls seemed to come as part of morphine withdrawal and stayed! I have been prescribed 1 tab daily of 0.088 pramipexole for one week. 2 tabs daily for the sevond week and 4 tabs daily for the third and subsequent weeks until my next appt.

  • Coincidentally, I now believe that I have always suffered from a form of rls as my mother has always complained that my arms and legs were never at rest! Everyone has always complained that I fidgit! I believe that it has just become more pronounced.

  • Had rls last night but it didn't last as long. No nasty side effects either. At least now, if I go spending money I can tell my husband that it's not my fault but the pramipexole!

  • If ANYONE watches the video with Dr.B talking about RLS. He talks about med dosage for the dopamine agonists. For Pramipexole (mirapex) the dose recommended is .25mg. thats two pills . For Ropinerole (Requip) the dose recommended is 1mg. That is now the recommended highest dose for both of those meds.

  • Those are small doses compared to a lot of people's rls drugs on here.

    Who educates our doctors?

  • For most of us, we educate our doctors. The recommended dose for the dopamine's now is because of augmentation. Even i have told people to go to the highest dose recommended before this new info for dosage is now being said. From now on i will be telling people who are just starting on the dopamine agonists to not go above the new dosage recommended. If that dose doesnt work, then i would think you change meds or add something to it, to see if that works. I am now taking one and a half of Pramipexole + one Tramadol. its works for me, for now. I was taking up to 3 Pramipexole before and altho i wasnt having augmentation, it was giving me problems with side effects. Now,( touching wood here it continues) the side effects have reduced.

  • I attended it live the night it aired, and Dr. B spent most of it on lowering doses of dopamine meds and augmentation. Questions and answers afterward- my question was specifically on back surgery and RLS. His answer was that they need some big studies on this, but he says he hears this all the time, and that has has to say that the amount of RLS patients that do complain about worsened RLS after surgery cannot be ignored, and must be addressed. My RLS ALWAYS starts in my left hip/back and the goes down my leg, and if I am lucky it does not travel anywhere anywhere else, but RLS after surgery is a real thing that needs some real close studying.

  • Depends on the strength of the tablets. Mine are 0.088 two tablets would only be 0.176 so three tablets would be 0.254.

  • Sorry i was saying the American way of saying the dose. Two .125mg are, .25. 0.088 is the same strength as one .125mg. So, only recommend taking two 0.088mg.

  • My husband suffers from rls as a health professional I feel totally helpless in being able to help him and have now considered hypnosis could you give any more details concerning this avenue,like you said more education is needed on this matter as many gps haven't got a clue on this subject as it not only effects the person who has it but also there family and that persons quality of life

  • I will ask Paul McKenna in a few weeks when I see him. He used a new technique they have been developing and then said I needed to carry with havening, which is often used to treat people with trauma. I am incredibly lucky to have access like this and if I can feed any info back I will, it was very effective for a short while so if that can be extended then who knows!

  • The first GP I saw (newly qualified) gave me a right run around and tried to insist I had cramp. I just went to see a more established, middled aged GP who immediately acted and was very sympathetic.

  • Alisdair, best of luck with Paul McKenna, Unfortunately I cannot be hypnotised, tried it before. The dose of 8mg XL Ropinirole is what the specialist recommended and said that it can be increased further if needed. I can go for days feeling good then for no particular reason my arms and legs go into spasm and I cannot rest. It has got to be the worst thing that has ever happened to me, the spasms are so bad. Hope something happens in the research world in the near future.

  • I am worried by that high dose of Ropinerole you are taking. Its way to high. That dose is probably making things worse for you. You need to see someone who can give you advise on getting that dose down, and getting off the Ropinerole. The more you increase that dose, the worse things will be for you.

  • Hi Alisdair, I wish you well when you see Paul McKenna in a few weeks time. You mention you are a healthcare professional. Would you be willing to distribute some RLS-UK A4 posters in appropriate places to help raise awareness? I have done this in my vicinity. You can obtain these from the charity by emailing Chair, Daragh Bogan: chair@rls-uk.org or print off copies which are on the RLS-UK website in the "Join US" section.


  • Anyone else interested in helping to raise awareness with these posters? Every little helps. ;) :)


  • Alistair: have you tried removing gassy foods from your diet? (Theory: painkillers changed your bowel flora and now gas pressures your nerves causing the rls symptoms). Avoiding potatoes, peppers, beans, greasy foods, and high fibre grains helps many people with rls....

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