About four weeks ago I read on here a post about gentle iron. After a really bad session of RLS I thought it was worth a try. I also went on a link to an article about the anemic brain. I bought some and waited for my legs to start . Sure enough that night they started, just as a film was getting interesting. I took a iron tablet and about 30 minutes later watched the rest of the film. I have since taken one tablet every night and have not suffered RLS. Just to satisfy any doubt I have since knocked the iron off and RLS returned the next day. So back on the iron now. The other amazing fact is my daughter has dystonia and also tried the iron , after learning about the anemic brain theory . She is so much better and has now come off her prescription drugs. I can't thank this site enough, and thank you to all the people who take the time to share there information.
Amazing: About four weeks ago I read on... - Restless Legs Syn...
Amazing
I'm trying gentle Iron too. I take it in the evening and am on my second week of it but yet to notice any change 
I'm delighted its working for you, long may it last.
Hi GillRLS, there are so many people trying the bisglycinate right now or thinking about trying it that I wanted to bring this post forward again. Hope you are well as ever!!!
Thats good to hear! ! Unfortunately it didn't work for me but definitely worth a go x
It never worked for me at all, but we are all different in what helps us and what doesn't, so am very glad for you! We have to do what we have to do to get any sleep. 
Hi Gills. There's so much about iron I wish I could teach you so you can carry on helping people. The iron is unlikely to help people with a raging infection such as Lymes disease. Every organism loves and needs iron. So mother nature, in her infinite wisdom, gave our bodies the ability to STOP the absorption of iron from the GI tract in the face of infection. Our bodies will release a hormone from the liver called hepcidin. Hepcidin is the iron gatekeeper. I have a feeling that the iron is not helping Raffs because he has Lymes Disease. Also, as I mentioned to you, when I raised my melatonin intake from 1mg to 3mg I had to up my iron intake to two pills. The people on this post who said that the iron did nothing for them are on theraputic doses of antidepressants so I have no doubt that the iron failed them. There is a point of no return. Had I taken 10mg of melatonin, which many people do, I don't know that any amount of iron would work. Plus, the iron, as you know, has to be taken during an attack on an empty stomach and it has to be bisglycinate. I know that these members took a different form of iron and followed their doctor's instructions as to how to take which I doubt was in the above fashion. I could go on and on about the iron and how and why it works. You can put "some answers" into the above search box and my original post about iron should come up if it hasn't been deleted.
You do not know, or you have forgotten? I DID take Bisglycinate religiously and told you many times, Glycinate. No wonder I could not find you before, you have changed your name yet again, for about the 7th time. Listen to what I have told you. I used the very iron that you are obsessed with, and it did not help me.
Nightdancer, then apparently iron deficiency is not your problem or the cause of your RL attacks. The Relaxis people tell me that my RL attacks start with the thalamus gland "notifying" my legs that they are not active enough, so they send their jolt of "RL electricity" to try to move me. And it usually does move me...right out of bed and walking the floor. But I have now found a natural L Dopa that is not a prescription drug, (I don't like drugs--there always seems to be a kickback from them, and their effectiveness eventually wears off.) I am taking Mucuna Pruriens which is a natural bean used in India to control PD and RLS. I encourage you to research all the avenues you can to find what might work for you. Lack of sleep is enough to drive one crazy!
Hi .Does the Mucuna Pruriens stop The RLS and are there any side effects?
And you're obsessed with opiates.
, I am not obssessed. To anyone reading this, I quote things from RLS experts, and yes I like opiates because in 20 years there is nothing else that works for me. period and I have tried everything! So, if I am obsessed with anything it is the idea that I can sit still and also I can sleep!
I take melatonin can you please explain what the problem is with it exactly. My doctor recommended it.
Melatonin blocks the dopamine receptors in the brain, and that is NOT a good thing. Pippin's Mum has RLS and one little pill will have her up all night. Melatonin is to used for things like jet lag, and is only recommended by the FDA for use for 10 days at a time, for people without RLS. It may NOT bother you, but you can try it. Some people CAN take it, I cannot for one, it makes me go bonkers. So trial and error as usual. All you can so is try it. Different strokes for different folks, 
HI. I have been taking iron bisglycinate on an empty stomach for several months now and it has not stopped my RLS.I don't take anti-depressants. I have no idea why it doesn't work for me.
Thats because like everything else, these things do not work for everyone.
You took the words right out of my mouth, Elisse!
I've had to stop melatonin. Some nights I found I needed two tablets. It's all trial and error. Also over a year ago now my doctor put me on something called a calcium vessel blocker for blood pressure. My RLS was all day long after that instead of just at night. I called my cardiologist and told him about it and he said you should have told me you have RLS. I guess cardiologists know how bad this can make RLS. He said (and I find this hard to believe) that it does just the opposite of RLS drugs that are calcium vessel openers.
Meant calcium channel blockers. The calcium channel "openers" that are used for RLS according to JohnsHopkins are the Alpha-2 delta drugs known as gabapentin and Lirica. So I was taking a substance that does just the opposite of drugs that are good for RLS. This chemistry stuff is beyond me. Good luck with the iron.
I did study pharmacology in school. Melatonin blocks your D1 and D2 dopamine receptors. It depends on the doctor, whether they know this or not, not what the specialty is. So apparently you cardiologist had a reason to study up on RLS. Smart man.
Because like anything else, no one thing works for everyone. iron had NEVER helped me, and I tried the gentle iron, any iron on the shelf and had infusions done, No joy there,. So despite some posts on here, as usual, no one thing will do it for us, and you gave it a good shot. Just because someone argues STRONGLY that it is the ultimate answer it is just not so. What meds are you on, if any? There might be something else that is not working for you, or triggering your RLS, Jumpey.
The evidence for iron therapy being effective is in the “low confidence” range. Oral iron is self-limiting, can create severe constipation/digestive issues and blood serum ferritin levels do not necessarily correlate with increased iron in the area(s) of the brain involved in RLS. It may work for some but there’s no evidence that it is an effective stand-alone treatment for RLS.
I can only speak on a personal level. For me it is life changing. I am aware of the problems related to taking iron, non of which have troubled me. So for me there is evidence that it is a treatment for RLS, I have the answer for me. Seven years on and I am still reaping the benefits.
Me too. Actually me number 29. There’s been a couple dozen people (some who have come and gone) that tried and got immediate relief from the iron. Most recently is Sher78. The iron is not enough for people withdrawing/withdrawn from a DA. Surprisingly, while someone is taking the DA the iron helps with break through symptoms it seems. People taking SSRIs or who have severe co-morbid illnesses will likely not get complete relief as we do.
There’s been enough evidence of this immediate effect that I believe this phenomena should be explained to newbies before iron infusions are pushed down their throats. It should be explained that serum iron (not ferritin) plummets at night and that’s why we get RLS at night (mainly). If we had adequate “brain” iron stores like the non-RLS world then we would be ok at night, I believe.
If low ferritin was a major player in RLS then we would have RLS 24/7/365 because ferritin remains “fairly” constant through-out the day. And if all of us did have RLS 24/7 then I would likely push for iron infusions as well.
It’s really that free-floating iron in our blood that is our lifeline. Iron is the grease and glue that keeps everyone’s dopamine transport system humming along. For some reason Mother Nature doesn’t want a lot of free floating iron in our blood as we get ready for slumber. It’s not a problem for those with adequate brain iron reserves, but for those of us with RLS who don’t have these reserves, we need to sneak our brains some iron at night.
Plus, I believe that once someone’s ferritin is artificially raised sky high then it is less likely oral iron will have an immediate effect, due to greater amounts of hepcidin in their body from the infusion.
Here’s Sher78: healthunlocked.com/rlsuk/po...
How much bisglycinate iron do you take during an attack? And how long does it take to work?
I believe she takes around 25 to 28mg. I would be thrilled if she responds herself, but her last post was three years after this. Or about 5 years ago
Oh wow, GillRLS actually responded as recently as 3 years ago. So 5 solid years of relief from the iron at night. healthunlocked.com/rlsuk/po...
Yes I am ,it has been amazing. I have tried coming off the iron and sure enough the problem returned. So back on the iron. Have you tried it?
Happy Easter Ms. Gill. And happy 9th month anniversary. A lot of people on here have been helped by your experience and willingness to share your story. The old guard is still trying to convince people that iron is just another supplement that won't work for everyone. As you and I know, EVERYONE with primary RLS has an anemic brain and iron isn't just a supplement worth trying. Iron is to us with RLS what iron is to someone with an anemic body. It's The ANSWER - if you can get it past the gut barrier and then the blood brain barrier, in sufficient quantity.
I wanted to bring your post forward yet again for the newbies.
Are you doing the trial?
It gets so complicated doesn't it. I don't really mind how it works as long as it works for me. I am interested to see what happens when I fly because that is when I suffered most. Will let you know.
Thanks for your good wishes. Daughter is doing amazingly well. Whereabouts in the world are you?
I am in England. Keep up the exercise, you know it makes sense. Hope he enjoys college.keep up the good work.
Please say how much you and daughter take.
I agree it is amazing, quite magical. A pill that works at night but not by day.
Strange isn't it, I do get more relief at night than in the day. I can cope with it in the day if I get good nights though.
I'm fortunate in that way. I don't usually have daytime RLS. What I meant was that taking iron in the morning did not help my night time RLS at all and I completely expected it to relieve my RLS as it did for you and DicCarlson. And actually when I took it at night I didn't hold out much hope. But it worked! And has continued to work for over a week now!
I also take it plus use a spray on Magnesium supplement, seems to be helping. Long may it last. Also got all that info from this site, so much advice and support x
What time of day do you use the spray and what time of day do you take the iron. Is your iron the byglycinate type?
I take the iron just after my dinner it's a gentle iron capsule, packet says iron is fumarate. Use the spray about half an hourbefore bed. It makes my legs itch for about that long before they settle. Don't like to use it earlier as it seems to wear off around 6am. Hope you find something that helps. It's a truly hellish condition.
So, your gentle iron is fumarate. Mine says "Gentle" too but it's bisglycinate. Well if mine ever stops working I'll try your kind. No hell, just heaven for seven...days
Hi Ms. Gill, I wanted to bring your post front and center since several people are considering trying the ferrous bisglycinate.
Hi GillRLS, hope all is still well for you. I wanted to bring this post forward so that PAM34 would have the chance to review. Thank you again for sharing your story.
Still doing well Thanks
I have just bumped into your post and am very interested not in the RLS bit although I have severe RLS and peripheral neuropathy but your daughter's Dystonia. May I ask how she is getting on and wether the iron is continuing to help her. I as as my wife has Dystonia and anything that might help her would be great
Hi, she spent some time on the iron which pointed her in the direction of improving her diet and lifestyle. The iron helped her a lot. She was without pain and symptoms quite quickly after starting the iron. She is now very careful with her diet, including lots of fresh veg and spinach. If it becomes a problem again it is back on the iron. Try it , it is worth a try.
Hi I have had RLS for years I am on pramipexole 3 a day was good but now I am in augmentation very bad I am under a neurologist due to see her again in August I thing I might try what you had could you tell me what they are and where you get them 24 12 41henshaw
Not what you're looking for?
You may also like...
FINALLY found a scientific study that supports my theory about Brain Iron and Serum Iron. Finally!!!
Looking for RLS specialist in New York
Ferritin level
Iron Infusion in the U.S.
Iron Bisglycinate versus Liquid Ferrous Sulfate
Ropinirole?
restless legs
RLS - Latest News
Some AnswersModeration team
