RLS

going absolutely mad with legs especially my right leg on 2mg repinarole but had to take another half a mg last night because I couldn't get no sleep, I know I have augmentation because my legs are starting earlier in the day know & it wont stop, I try to hang on till late in the evenings to take my meds but its getting worst I have tried taking tramadol (this is brilliant for RLS)but this makes me constantly itch all the time, when you want to come of dopamine try taking tramadol it works for me apart from the itching I take Claritin once a day but this doesn't help either for the itching I mean.so its back to square one again, I did speak to DR B & he told me to keep changing my meds which I did went on the patch but didn't do a thing for me. it did at first but then it stopped working.

35 Replies

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  • hi Connie i know how you feel both my legs are at it nearly all day long, its worse at night jumping all over the place take care Alan xx

  • thanks for your reply but I know I have to come of dopamine

  • hi Connie just to let you know i'm thinking about you take care Alan xx

  • gone back on tramadol because I know I have augmentation & its the only thing that seems to work for me apart from the itching that is, got to try & come of the dopamine its going to be very hard done it once before, was very very difficult. I was only of dopamine (repinarole) for a week then had to go back on it because my legs were driving me mad.but, having that weeks break from dopamine seemed to have done the trick.

  • hi Connie my thoughts and prayers are with you, i was on tramadol and they took me of it because of other medication that i'm on stopped it from working, the only thing they have given me is solpadol 30mg/500mg. hope your jumping beans stop take care look after yourself your friend Alan xx

  • Connie just seen yout email so have replied .Have you stopped taking the dihydracodeine that you had for your ankle? If so maybe you could ask for some more just to take at night because they seemed to help your legs.I know that you already know that if augmentation is starting the last thing you want to be doing is taking an extra Ropinerole.See about getting back on the painkiller and weaning down the dopamine xx

  • Connie you know that increasing that dose of ropinerole will just make things worse with the augmentation. You need to stop taking ALL the dopamine meds and try something different. Maybe a different pain med that might work better without the itching.

  • hi Elisse sent you a private message if you didn't get it let me know,

  • Connie i didnt get any PM from you.

  • I hope you find something that works. I second what Elisse says. You augment faster than anyone I know out of all the RLS groups, and the dopamine meds just do not seem t be the answer for you. I know Dr. B well, but he has not been witness to all that you have been through the last year. All this switching meds seems to put you into crisis about every 3 weeks, it is a pattern. Wish I had a magic wand for you, especially, but i know Pippin is helping too. I do love your tenacity, and you never give up! ;)

  • I wish I new the answer my self, I know I have to come of dopamine drugs because of the augmentation, but its knowing what pain killers to take, I know I cant take any painkillers that's got codeine in it because its that that's making me itch all the time, I broke my wrist & the hospital gave me some dihycodine tablets for the pain this helped my RLS but I couldn't stop itching so I know its the codeine that makes me itch all over, I wish I could take tramadol because this is brilliant for RLS but this makes me itch also. Its catch twenty two, anyway night dancer I went on the forum last night not been on it for MThs how did your visit go with Elisse, has it already happened, if so hope you enjoyed it if not you will.

  • I take 30/500 co-codomol 8 per day and Ibuprofin too, which makes my asthma worse. Also Desloratadine for hayfever, Phenergan for eczema so lots of aanti histamines but still not able to protect me from RLS or my allergies.

  • Do you know all those anti-histamines are probably making your RLS worse.

    Look at this website and the treatment page for a list of what we RLSers should avoid that can make RLS worse. rlshelp.org you can also email the doctor who runs the site, he is a expert on RLS and the meds.

  • Again, have to agree with Elisse here. The Phenergan, especially, is high up on the "no no" list. Antihistamines block the dopamine receptors in your brain, and that is why they make RLS worse for 99% of us. The Desloratadine is the same as our Claritin over here, and that is usually the safer one, but CAN make the RLS worse, and if your receptors are blocked by those meds, the pain meds are not going to be able to reach the dopamine receptors to calm down the RLS. rlshelp.org Go to the treatment page on that web site and see the list of Drugs to Avoid. So, that is something to think about for you. ;)

  • If I don't take my reprinole by to 3 o'clock in the afternoon my restless leg is nuts by 8 o'clock.

  • We all have a different schedule that we have to follow for our individual meds. BUT, has your RLS started coming on earlier and earlier? Am wondering what dose of Ropinerole you are taking and if you have increased it lately.

  • Hi nightdancer at the moment I have started to try & decrease the dopamine ( I no I have augmentation)so last night before bed I took 1tramadol + 1mg of repinarole I have been taking 2mg repinarople at night so I can sleep, as for the tramadol it used to make me itch all over. But for some unknown reason the tramadol does not make me itch anymore its so very weird I just cannot explain it, my usual dose or meds consist of 2mg of repinarole at night just before bed, but because my jumpy legs start earlier I thought I was starting with augmentation.

  • Connie, I don't like prescription meds and want to get off them and have striven to find out WHY my legs react with the jerks and creepy crawly feelings at night. I submitted this answer to another sufferer. I hope this helps:

    You sound like me, HMM-R! I've been searching 40 years for some answers, only to continue to grow worse and worse. I have tried everything you listed and experienced NO results, just like you! My doctor was killed in a freak accident and I had to get another one, and this one may have nailed the problem! He said that I needed to have my leg veins checked. I did. The Vein Clinic did an ultrasound of my legs and showed me veins where the blood was NOT recirculating sufficiently back to the heart CLEANED UP. The bottom line: my legs were retaining "dirty blood" which causes the leg tremors and jerking so typical of restless legs. I am in the process of getting approval from Medicare (they will pay for this treatment), and then I will start the process of the doctor closing off the stretched out veins that cannot sufficiently clean and return the cleaned blood to the heart. I'm no medical person, but I can understand this. The doctor in the Vein Clinic said that they cure "80 Percent" of patients with Restless Legs. At last there is hope on the horizon for me! I encourage you to look into this. It could be a permanent answer, which is what we all look for--not just continuing to "cover up the problem" with medicine that eventually does not work. God bless! Report back any progress you come across.

  • thanks for your reply, will definatly look into this will keep you up to date

  • The RLS experts say there is no connection between leg veins and RLS ,one is a circulation problem and the other is Neurological.If the veins are causing problems then by all means get them seen too but do not expect it to make any difference to your RLS,sorry x

  • Interesting how all the different "experts" disagree on the cause of RLS. I'll certainly let you know. I think the cause of RLS is different for different people. No two of us are alike. I do know food allergies play a big part, and few people check these out.

  • I am talking about experts and specialists that do the studies and the actual research, and ones I have known for 20 yrs. But, you let us know, ok? RLS is neurological and that much we do know.

  • I have checked out food allergies extensively and so have lots of my people, so people do check it out. No food at all bothers my RLS in one way or another.

  • Sounds good I have always thought RLS was connected to poor circulation.

  • sorry to disappoint you but RLS has got nothing to do with poor circulation its to do with a chemical in your brain called Dopamine (lack of it)

  • Also, to add to this, Connie, RLS is actually not a lack of dopamine per se, it is that our neuroreceptors are blocked and the dopamine cannot get to where it needs to go. On the other hand, Parkinson's Disease is a lack of dopamine production. Hence why Parkinson's doses are much higher than RLS doses.

  • RLS is neurological and it is an "OLD theory' that veins have anything to do with it. All I can say is NO NO NO. Will not help. RLS is not a circulation issue, it is brain chemical issue.

  • hi pippins2 I already know that

  • Veins have nothing to do with having RLS, just as pipps has said. I know your are looking for a miracle cure, but having your veins done will not be that miracle cure.

    Nobody LIKES taking meds to get relief, i certainly do not. But if i want to get any sleep at night, then meds it is.

  • thanks for your response but I already know about veins & as long as there's meds out there to ease the system's I will carry on with the meds but I will take advice from people that know what they are talking about take care,

  • I have been on ropinirole for years, I have never experienced itching. I have had RLS

    for about 50 years. I do not experience pain, it's an urge you can't control.

    Legs jump involuntary I cannot control them. Not nice But are helped by taking dophamine tablets. It's a case of trial and error until you find a suitable drug.

  • it is not the repinarole that causes me to itch, its the painkillers that have codeine in them (I have augmentation ) so have to wean myself of the dopamine drugs so take painkillers, been through this so many times before, (tramadol used to make me itch terrible) but like I've said previously for some unknown reason this does not apply anymore got down to 1mg repinarole at night + 1tramadol up till know its been fine for the last couple of nights, but not holding my breath yet.

  • That's good Connie that you have managed to reduce your dopamine med down to 1mg you are going in the right direction and glad the Tramadol didn't make you itch this time x

  • I know what I have to do but its very very difficult up to know the tramadol as been fine no itching,don't no how long that will last for, but I do no the only way to stop the augmentation is to come of dopamine drugs for a few days, up to know I have managed to reduce my repinarole by half the next step is half again then BINGO of all together might take a couple of weeks but I no I have to do it, Hope your ok pippins2 send me an email when your feeling a bit better, take care Connie 50

  • Hi Connie,

    The dopamine meds didn't work for me, I was recently switched to Gabepentin and worked for about 3 weeks (had to increase dosage ) so I went back to what I know works - marijuana. I've not taken any meds for almost a week now.

    My legs would start early in the day and was nonstop. I have a doctor's appt next week so I'll see what he says.

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