STILL LOOKING FOR ANSWERS

When my RLS kicks in (ha ha) I get it in one leg at a time ,never both. Is this the way it works for everyone? It usually starts up on it's own, but if I think about it I can make it start. Which makes me wonder if it's more that a physical condition. I'm starting to get it in my arms. If I don't have Requip with me and it starts ,my leg will go into convulsions. This is beyond hell , and I become a crazy person. I get so angry when I read an artical or report on rls and the Doctor makes it sound vaguely uncomfortable. They know nothing. These are the medicines I take everyday and I'm going to start reducing them as soon as i talk my Doctor around. Colonazepam

1mg 2Xa day , Requip 3 mg 1 in am 2 in pm.Gabapentin 600 mg 1 in am , 2 in pm. Most nights I sleep 1 1/2 hrs. , but I can go 1 to 3 nights without any sleep at all. That is when the Beast comes out. Pam

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  • My RLS kicks in one leg at a time as well. Never both.

    Search Augmentation in the search box above as it sounds to me like you may be experiencing augmentation on the Requip. It's getting worse and has moved to your arms- tell tale signs of augmentation.

    Jools

  • hi, jools, we were typing at the same time. :)

  • RLS is definitely a neurological disease, as in physical. The neurotransmitters in an RLS brain do not work the way they are supposed to, and while we actually have enough dopamine, it is blocked from getting to our brains. Simplistic explanation. We have a dopamine transport system and it is kind of messed up. I CAN safely say that your dose of Requip is over the recommended therapeutic dose, which should be only 2 mgs in a 24 hr period, as recommended. Even if you took an extra 1 mg, you are way over that. You are up to 7 mgs a day and that is too high, What you are describing is augmentation, and you should read up on that. When you are taking TOO high of a dose, it will do the exact opposite of what it is supposed to do. You need to talk with your doctor about this, and you can search all kinds of posts here about augmentation in the search box. RLS is one sided, 2 sided, and can go into the arms, especially is you are augmenting , which is a fairly common thing. Also the RLS-UK web site has info in this. There is a post on here called "Brilliant article". Search for that post in the search box and read that, by one of the most renowned experts in RLS,. it has a link to a very good article explaining what augmentation is. The old therapeutic dose was 4 mgs for Requip, and it has been lowered to 2 mgs, If it does not work for you at this dose it is not the med for you. If it worked at first and then you had to keep upping the dose, this is how augmentation starts and it only happens with the dopamine meds. people can get full body RLS, one sided, both sides, it can change, there really is no pattern. Mine IS mostly on the left side now and years ago it used to right sided only. :) So do some reading and research, if you google "dopamine and augmentation" you will also get a ton of info. This is a common every day subject in EVERY RLS group. Sorry you are suffering, but I am betting the bank that you are augmenting on the Requip. Augmentation literally means "worsening of something"

  • Thank you both, I know I have to go off it completely although gradually because of the passing out and falling. I may also have to change Doctors as mine doesn't seem to take this as seriously as I do. I'm afraid of staying on and I'm afraid of withdrawal . I was so stupidly innocent at one time , I thought my Doctors were looking out for me. Now I know that's my job and thank God resources like this site exists. Pam

  • There are some things that those of us who prefer not to take medications use, with pretty good success. Since RLS has a few different causes, it helps to know what you have. There is Primary RLS that often starts when one is young, for no discernable reason. Then there is Secondary RLS, which people seem to get from accidents, surgery, various conditions, etc,, that disrupt the spinal integrity.

    There is a lot of info out there on the fact that with RLS people iron does not cross the blood/brain barrier into the needed parts of the brain, and this causes the downstream problems with various hormones (dopamine, Gaba, etc) that lead to RLS. Johns Hopkins University has a lot of info about that. I suggest you look up iron and RLS and you will find what has been scientifically studied about that connection. Iron bisglycinate is the one of choice, as it does not cause constipation and is easily absorbed.

    Also magnesium is very helpful, but not just any magnesium. Magnesium oxide is the worst as it causes severe diarrhea in amounts needed to help RLS. Magnesium citrate is very good. Magnesium taurinate, glycinate, malate or succinate are also good. Often these are found in combination. Some people use magnesium oil, tho it can be prickly on the skin. Magnesium cream is better tolerated, but has less magnesium in it. I use these in combination with capsules of magnesium.

    B complex, especially folic acid, is helpful as well. There is also an RLS connection with estrogen dominance as one gets older. (Look up that connection as well.) I myself use a Bio-identical Progesterone cream, (not synthetic) which is not available in the UK (I looked on Amazon UK) if that is where you are. Some people have found when they ran out of their HRT, their RLS was better. I'm only mentioning.......

    So, Iron Bisglycinate 25 mg taken at night, not during the day or it is not still in your system, I use one called Solgar Gentle Iron; I actually take 400 to 600 of Magnesium which is a mixture of the above- usually one in the morning and two in the evening. I use a brand called Source Naturals Ultra-Mag, or different brands of Magnesium citrate. I use Solaray B Complex 50 capsules a few time a day and always at night. The Folic acid I have is Country Life Methylfolate 800mg, sublingual tablets, which are easily absorbed into the system. This I take at night also.

    I think that, perhaps, for me at least, these supplements work in combination. I know that the iron helps my RLS. Recently I ran low on magnesium and sort of rationed what I had, one night having none at all. Those few days my RLS got worse, and the night I had no magnesium, I was up most of the night with the electric impulses coming every 20 seconds - one leg and both arms. It was Terrible! So, I know magnesium is necessary for me.

    Incidentally, there are things that can sap magnesium out of one's body - several blood pressure drugs (I take 2 of these) and alcohol (unfortunately.) So supplementation is necessary. And magnesium can help with sleep. B complex - I can't live with out it! It helps with sleep by calming the adrenal glands. I take it also if I wake up in the night.

    Also I go to a Chiropractor to keep my spine in alignment, as when it is 'out' my RLS can be rather bad as the nerves are being pinched or otherwise compromised. And I do stretching exercises that help keep the spine flexible.

    I am NOT saying that one might not need any drugs, depending upon their own situation. But I am saying that, as there are connections with all the above-mentioned nutrients and RLS, taking them, one can most likely take a smaller dose of any drug, if- or as-needed. So, I suggest you look some of these things up for yourself and give them a try.

    Hope this helps!

  • Thank you for taking the time to help. I have been on the J. Hopkins site, there is a lot of information. I remember my Grandmother rubbing my legs at night when I was 6 or 7 years old so I could go to sleep. They said I was having growing pains. It left and came back in my thirties. I was anemic, which was taken care of ,but the RLS never left. Pam

  • R u saying that if you think about it then it starts . Well thats nonsense some ppl have had rls all their life me too. and to say that its nonsense. it just happens and nobody knows why. Sometimes both legs or either.

  • I am saying my RLS starts on its own for what ever reason, but I can bring it on by thinking about it. Which of course I don't want to do. I have noticed people don't always experience this disease in the same way. Because I experience it in a way which is different from yours doesn't make my experience nonsense. I don't pretend to be an expert on RLS, however, I do know my own symptoms, and I don't care for the implication that I'm not being honest.

  • Well there you go if ppl think about it their legs get jumpy ! Stuck for words.

  • Well guess what. My daughter (30 years old) has mild RLS and asks me not to talk about it too much because when she thinks about it they start jumping. They annoy her less than once a fortnight so she is not doing anything about it yet. I am hoping the attention its getting will produce a real cure in not too many years time. My other daughter gets it at times and she rubs her legs with an Mg cream which she says calms them down. I would not dare to imagine an explanation of triggering RLS by thinking about it.

    Needless to say both daughters praise me for being so generous and sharing such rotten genes.

    Graham

  • Well what im saying if you can bring rls on just by thinking about it then mayb you can stop it too .by just thinking about it .simple !

  • Ah jenniebeannie, my new best friend. Maybe there is a way to use your mind to help your body, and we don't know how to do that yet. Some day we will have the answer. Bio-feed back comes to mind. My cup is half full, Pam

  • No, sadly, that doesn't work! If only we could just wish it away!

    I think it's possible that thinking about it prompts some kind of chemical change. When our mind perceives fear, for instance, our body produces adrenalin in response.

  • Well have told myself that im fine and my rls at the moment they r jumpy i have sais och it will pass and its in my mind but no that didnt work . Wish it was that simple .

  • You are right. I've had severe RLS - everywhere - legs, arms, hands, shoulders, for over 40 years. I normally have to take meds around 7pm (also in the day if travelling or at the theatre, anywhere having to be still). Sometimes, if we're enjoying an evening out with friends, I forget my dose but then I'll suddenly remember, perhaps an hour and a half later, and on it comes, and with a fury too, so that I have to go outside and walk/run around for 15 minutes or so, until the tabs are kicking in. Or if my husband asks if I've had them, the same thing happens. Eventually it will start anyway of course, but later if I'm busy. The last time I was out and forgot to take them I didn't remember, and was not reminded, and it began around 9.15. When it happens this way it comes on especially viciously.

    My son has RLS very infrequently, and he has asked me not to speak to him about it because, he says, reminding him makes it come on.

    So yes, I believe there can be a mental trigger

  • Any reports I've read never mention this . it's curious.

  • I am the same - only usually in one leg at a time and yes, if I think about it, it happens!! The more I try not to think about it, the more I actually do so then I suffer!

  • It's the elephant in the room.

  • My RLS starts in one leg or arm and on a bad night will go round from one limb to the next (sometimes 2 laps!). Never found a pattern of where it starts or which way it goes. On a good night my Tramadol gets me through with no RLS. With the Tramadol-insomnia my mind is busy going from one thing to another but if I start feeling for onset of RLS it WILL happen! It's like anticipating onset of tickling.

  • Thank you for responding. I've read a few studies on RLS created by Doctors and the information comes from them or their interpretation . Have you ever seen one where patients are interviewed ? I think this site has tons of information that gets lost because it's filed by topic and there is often more to learn in the rest of the post. Am I missing something, it's happened before. Pam

  • Dont let anyone tell you its all in the mind!!! I have been recommended a psychiatrist but I dont expect them to understand that I am talking about real "pain" Extreme discomfort. I'm not paying another expert to tell me there's nothing seriously wrong. I guess if you have never experienced it then the descriptions sound a bit strange and not uniform between victims. Not our fault we don't conform to a standard.

    At the risk of being boring I recomend you search this forum for FODMAP diet You might be one of the lucky ones. If I can help with any aspects of the diet just ask.

    Graham

  • I get it sometimes in both legs, sometimes only in my left leg and rarely just in my right leg. My left leg is the worst and my left foot is affected but never once in my right foot. My left arm is affected occasionally. I don't get it by thinking about it thank goodness as I spend most evenings trying to help people on forums so I wouldn't be any use doing that if it brought my own RLS on but I have heard other people say that before. It sure is one crazy condition!

    Pipps x

  • I'm feeling a little less crazy.

  • There is something called glutamate in the brain that lets you know you can calm down. I know I don't have that exactly right , but I think there is something there.

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