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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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nightdancer

a year ago

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"

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lauraflora

a year ago

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!

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lorrinet

in reply to sweetiepye

a year ago

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