Some Answers

Here's a short article from Johns Hopkins followed by a long conversation discussing it.

hopkinsmedicine.org/neurolo...

MR X -

I tried some N-acetyl cysteine at one time to try to lower my glutamate. No change to my RLS.

Besides continuing the biochemistry we really also want to know about who gets RLS. Is it genes, genes plus environment, those who have led a particular lifestyle (too fat, too thin; little exercise, athletes; teetotallers, regulars at the pub; calorie restricted diets, carbohydrate restricted diets, fat restricted diets, protein restricted diets, vegetarians, heavy meat eaters, vitamin poor diets, mineral poor diets; anxiety limited; stress limited; sleep limited; academic, skilled, unskilled). What drugs sufferers have taken. What other medical conditions they have suffered from. What is the frequency of occurrence in different parts of the country, different parts of the continent, different parts of the world and what is different about these different places?

JANE DOE

Why? Dead men don't lie. The autopsies showed that our dopamine transport system/receptors are puny...almost as puny as our brain iron levels. I'm avoiding ALL of the no no substances, I'm taking iron bis-glycinate or potassium during an attack, I'm going to give under-eating a shot, and I'm waiting for all of you out there in the RLS world to start figuring out ways to up-regulate our receptors.

MR X -

Yours is a slightly special case, of course, in that it responds to iron supplementation. Eating, and possibly more so eating carbohydrates, like orgasm, increases dopamine production, and increases iron transport, so maybe you'd need to be careful how you go on about that. But if our receptors can work properly in the morning, there must be a reason they don't later in the day and during the night. Do we just become understimulated as the day goes on?

There is a known correlation between the incidence of RLS and latitude. There are far fewer cases as you move towards the equator. The occurrrence is only 0.2-0.7% in Africa compared to 3.2% to over 18% in Europe, and it's much lower in Turkey and Greece than in France and England where it's lower than in the Scandinavian countries.

JANE DOE-

There have been numerous correlations made between the rise in use of antidepressants in the Scandinavian countries and RLS. I think we with RLS are pre-disposed to it, and certain people from certain families and certain countries have a higher incidence of that pre-disposition, but then it takes an environmental trigger. I bet RLS is almost non-existent among the aborigines of the Amazon but give them anti-histamines and anti-depressants, especially to the older members, and RLS will rear its ugly head.

Also, I believe that iron levels have a circadian rhythm. Serum iron levels drop off in the evening and begin to rise again after 3am. As we age so do our bodies (duh) including our dopamine receptors. Everyone's receptors age, however, I believe that we with RLS feel it more acutely. So yes, there are numerous factors to consider, but I think we have covered alot of them. DONT take antidepressants, we see how well that worked out for the Scandanavian countries. Since all RLS brains are anemic, allegedly, then if we can get some iron to our brains (not just our bodies) at the right time it should help an awful lot of people.

MR X -

Penn State's Hershey Medical Center (and others?) state:

– The cells forming the Blood Brain Barrier are a reservoir for iron not a simple conduit.

– The reservoir allows for fluctuations in serum iron status not to effect immediate brain iron needs. Serum iron circadian rhythms for example.

– In RLS the reservoir is empty.

The question, it seems, is whether or to what extent it's to do with signaling processes involving the likes of iron regulatory protein 1 (IRP1) and hepcidin.

JANE DOE –

Wow, our brain reservoir of iron is empty!!! Thank you for sharing that information. My puny brain needs time to process that protein signaling thing. I do understand about hepcidin, the iron gatekeeper as I like to call it. Hepcidin is released from the liver in the face of infection or even cancer. The hepcidin which is a hormone is able to regulate, or flat out stop, iron from getting into our bloodstream, either via our stores or the food in our stomachs. Every living thing loves and needs iron so by making our blood devoid of it, the infection has a hard time surviving. Quite an amazing defense mechanism. But in the meantime we get RLS... maybe. The vast majority of the world can develop a horrible infection have hepcidin coming out of their ears yet never develop RLS. So I guess the question is for those of us who are predisposed to RLS and can't handle any drop in serum iron, is it possible that our bodies always think it's under attack and we always have too much hepcidin floating around.

JANE DOE -

Speaking of demographics, it seems that studies of people with end stage renal failure are upwards of 50% in terms of RLS. It's almost like there's a point of no return. If we're so sick, and there's so much hepcidin in our bodies and so little iron, then just about anyone can fall prey to RLS. BUT in India, one small study of patients with end stage renal disease showed that RLS was still in the single digits among them. Is it all that tumeric? So yes, studying demographics is very worthwhile but we know so much about the nuts and bolts of RLS that I say let us all figure out a way to fill that reservoir, be it by lowering the hepcidin in our bodies, lowering glutamate etc.

The International Restless Leg Foundation had a symposium in October 2015 and summaries of that meeting are now on the internet. It's long and somewhat difficult to understand but most, if not all, of the buzz is still around iron. There's talk about those genes they discovered and one of them they believe has something to do with iron management but what's interesting is 75% of RLS patients have that gene but so does 65% of the control population that has no symptoms of RLS. They suspect there are more genes out there that they will find someday. Lastly they debate the protocol and first line treatments for RLS. DAs versus opiates versus Gaba. Even the excess glutamate they believe is not a cause of RLS but a by-product of iron insufficiency - if I read the article correctly.

What are you taking to control your RLS?

MR. X -

I take 2 mg ropinirole mid-afternoon and another 2 mg maybe an hour before bed to control my RLS. Gabapentin doesn't work nor any supplement I've tried.

JANE DOE –

Is your RLS well-controlled with the Ropinirole? Some people say that iron or iron infusions delay augmentation even though alone it does not get rid of their RLS symptoms.

I truly believe that people who do not get any relief from iron are taking the wrong kind or at the wrong time. I believe that iron is to RLS what insulin is to type I diabetics. Taken in the right amount at the right time, insulin should do a good job of controlling blood sugar levels. Not a cure but the best treatment we have so far for diabetes. Pancreas transplant is a cure. Brain transplant anyone?

MR. X –

Yes, ropinirole is controlling my RLS well and has for a few years now. I still worry about the next step if my RLS augments though.

I might have to ask my doc what he thinks about all this and iron infusions. I've always feared that overdosing on iron can damage the liver.

JANE DOE -

That's key to all things in life, not to over do, but especially heavy metals, which iron is. Menstruating women probably have to worry less but men and older women have to be more mindful. I look at it this way, my son's Flintstone's vitamins have 18mg of iron and I take 25 mg but I bet I'm absorbing more because the kind I take is so bio-available. It's so broken down I don't know that my body can even stop it from entering when it feels it has enough iron. Anyways, I think 45mg of iron (that actually gets absorbed) is the upper limit on a daily basis. I think that ferrous sulfate pills are 65mg but studies have shown that a ridiculously low amount of it gets absorbed. Even pharmacists will tell you that. Anyways, if you're worried then you can take it under a doctor's supervision. I go annually for bloodwork and my iron levels stay around 100. I want it lower. The lower the better. Supposedly less iron = less chance of heart attack. I know the RLS experts will tell you over 50 but I think they got it all wrong. Including Johns Hopkins where they will infuse you to up over 200. Plus they found that unlike the rest of the world, RLS patients' stores will drop. They think that drop is why the RLS returns. I think like you or the article that you provided at least, that it's because the BBB reservoir is depleted and our dopamine receptors (that gorged themselves on infused iron) are beginning to once again wither on the vine like flowers from lack of water.

Essentially what I'm saying is that if I need iron to sleep, even on a long term basis, I'm not worried about the 25 mg capsules of it. On the other hand, I'm a firm believer that with heavy metals, less is more . Hello potassium...shouldn't take too much of that either.

MR. X -

Yesterday, I took 4 x 18mg of iron as ferrous bisglycinate chelate at about 11:30 a.m. (so, on an essentially empty stomach) and the same again at about 6:30 p.m. (again on an essentially empty stomach) and ate over 400g of lamb's liver at lunchtime (around 1:30 p.m.). I did not take my first ropinirole until 6 p.m. (rather than 3:30 p.m.) and had virtually no trace of RLS at that time, nor all evening.

Now, I may have been going through a rough patch with my RLS lately, and it may be that it's now swinging the other way, but it has been that 3:30 p.m. was the latest I wanted to leave taking my first ropinirole – if I'd left it until 6 p.m. I probably wouldn't have known what to with my legs, and indeed my upper torso, (and hence myself) until after 8 p.m.

I don't know how long I will keep this iron intake up for, probably no longer than 10 days if it doesn't stop my RLS without the ropinirole.

JANE DOE -

Robert, how did you determine what amount to take? Like I said, I take only one pill which is 25 mg. Did your doctor tell you to take the amount? Well, I'm VERY happy for you. You are a brave soul indeed.

Maybe you and I can come up with a regimen of iron, potassium, and undereating that will help most of the RLS world. Then we'll be awarded a nobel peace prize and all this ridiculous suffering won't be in vain.

MR X -

I think 144 mg a day is near the lower end of the suggested amount for oral administration (before trying IV). If I ask my doc, he will probably just ask me if it's something I want to try. If I do get positive results from taking the iron, I'll probably check with him if it's something I should continue and if so within what limits and whether I shouldn't have blood tests.

I found this 2001 report on experiments on rats and pigs stating:

" ... [ferrous bisglycinate chelate] has been demonstrated to have a No Observable Adverse Effect Level (NOAEL) of at least 500 mg per kg rat body weight."

"Toxicology and safety of Ferrochel and other iron amino acid chelates", Robert B. Jeppsen, Albion Laboratories Inc. Clearfield, Utah U.S.A.

If you read that report you will understand that I would not be trying it with any other source of iron other than ferrous bisglycinate chelate.

JANE DOE -

You are simply the best!!! I feel alot better now too about taking the bis-glycinate. Well if you're like me it will work every time without need for increasing dose, although I started from a point of no prescription drugs. Thinking back on it, when I increased my dose of melatonin I had to double dose of iron. That didn't last too long. Shortly thereafter I found that melatonin was triggering attacks. Will you keep us posted? Xx

MR X -

Yes, of course, I'll keep you posted. It wasn't an hour ago that I took my ropinirole and I've no RLS symptoms at the moment.

[I still take 5mg melatonin time release each night. The only thing it does is give me a deeper sleep; I don't think it affects my RLS.]

JANE DOE -

I'm glad that stuff works for you. I was on 1.5 mg and had restless body, when I went to 3mg I had to take two iron pills just to keep from jumping out of the second floor window. We're all so different...and then not really...if you know what I mean . The iron isn't just an RLS reliever but sometimes I take it when I can't fall asleep. I consider iron to be a sleeping pill as well. I have taken it and then found myself on the living room floor four hours later. An hour after I take it I have to be in bed because I just drop.

Why do you take the ropinirole if you have no symptoms? Is it more like blood pressure medication where you have to keep it in your system or a pain killer like aspirin?

MR X -

Well, yesterday I took the iron as I described the day before yesterday, but I left taking the ropinirole until just after 7 p.m. (rather than the 6 p.m. of the previous night described above). I had just begun to feel a few RLS-like twinges in my leg. And that's about the most I felt throughout evening. If I hadn't taken the ropinirole then though, I think my RLS would still have become strongly prevalent. Still 6 p.m. and 7 p.m. onset is a lot better than 3:30 p.m., but there again I may just be on a rebound swing.

Iron is needed by so many processes, I'm fairly sure some of them have to do with sleep.

I would not expect my iron levels to recover in just a day or two, if they are indeed low, even on the supplementation I'm taking, so I'm expecting to need to take ropinirole for a while yet even if the iron therapy works.

The question in my mind at the moment is whether mitochondrial iron hogging, if that is indeed the problem, is a/the disease or just a facet of, a need for, our individual make-up and lifestyle.

JANE DOE -

Yes, the under, under lying cause of RLS is still very much a mystery. Is it just genes or our gut microbiome or out of control hepcidin levels or iron hogging? But we know how it presents - low brain iron resulting in very shoddy dopamine receptors but plenty of dopamine kicking around just waiting to be transported down our central nervous system by those pathetic receptors.

Like I said on here before, probably for a good portion of our lives there's just enough iron going to our brains (even at night when everyone's serum iron level drops) and there's just enough dopamine coming out of those receptors such that we don't even know we have RLS. Then something happens. Like the aging process which includes the aging of those already pathetic receptors. Or a spinal injury so that now that drip of dopamine which is traveling down our CNS, bouncing from spinal neuron to spinal neuron has to contend with a road block so to speak. Or we become obese which allegedly is also a drag on our already pathetic receptors. Or we start to take statins, anti-histamines, antacids, a near endless list of substances that interfere with the release of dopamine. Magnesium allegedly intereferes with the release of dopamine!!!

MR. X-

Of course, the report of increased dopamine levels was in 1985 (Montplaisir et al) and I do not find any later ones supporting it. Others suggest near normal dopamine levels. And "normal" levels might well be expected if dopamine receptors are fewer but dopamine production is lower.

Another rat experiment showed "The loss of iron in the striatum due to dietary ID was significantly correlated with the decrease in D(2) receptor density ...".† Since the amount of dopamine in the synapse is closely controlled, the lack of availability of dopamine will, I understand (perhaps falsely), signal the creation of fewer receptors. However it goes on to say that it was more pronounced in males than females. Women are more likely to suffer with RLS than men in the human population, so there's some tying up to do there, I feel.

In all, I seem to be seeing that the problem is indeed with iron, whether it's the amount available or the control of it I don't see fully answered yet.

Indeed the levels of many nutrients fall with age. Iron, though, it is reported, tends to build up in the brain with age. Not in everyone? We can't access it? It's because we can't access it that it builds up?

[It's now well gone 8:00 p.m., I've not taken any ropinirole today so far, and I've only very, very minimal, scarcely any, RLS symptoms. I went out walking today, some miles, so I in fact took five ferrous bisglycinate chelate capsules (18 mg elemental iron) both this morning and earlier this evening.]

JANE DOE -

OMG, unbelievable! 8pm and no drugs and little to no symptoms. What about Melatonin? Can't even type that word without shuddering. For me it's the devil incarnate. Are you still going to take it?

Is it time for a revolution yet? Should we take our anecdotal evidence on the road and let the RLS world know that this is something that MIGHT work for others as well? You realize that you are one of the lucky ones. Your symptoms were controlled with drugs. There are some that are one step away, night after night, of going off the RLS cliff.

MR. X. -

I still took melatonin last night. Don't know about stopping that – I barely got 5 hours sleep last night.

Of course, it is known that those IV iron treatments relieve RLS symptoms in about 70% of cases. I wonder about the position of biglycinate oral treatment though. Biglycinate capsules don't seem to appear on the NHS drug price list (not under biglycinate, ferrous or iron), so I don't know about getting them on prescription on the NHS in the UK. I have seen high dose capsules for the medical treatment of anaemia exist though. If the medical profession agrees with the rat and pig results for the non-toxicity of the bisglycinate, maybe they should let on a little more.

JANE DOE -

Five hours really isn't enough, at least not for me. This is what I would do (but you're not me and that's important to remember) I would save the iron for at night, for sleep. By day I would gut it out and I would experiment with some form of bio-available potassium or even a tonic water that has quinine in it if you're desperate during the day. So I would take some (not a ton) of iron before bed and then if I wake up too early I would take a little more iron. Well that's me.

MR. X -

RLS was not the problem with my sleep. 5 hours was all I got with the help of 7.5 mg of zopiclone. 5 hours is about the minimum I can cope with; on a very good night I might get 7 hours.

[Moving towards ten o'clock, now, and I've some mild RLS symptoms. If they persist I'll have to take ropinirole – in any case I will take some before bed, because I want to be sure I'm not kicking about in bed for two hours or more!]

JANE DOE –

Ahh, I'm a bit of an insomniac myself. Like I said, regardless of RLS, iron is the best sleeping pill I have found to date, and that includes the prescription ones. It might not affect you that way, but it does me. I hit the bed about 45 minutes after taking the iron otherwise I fall asleep where ever I happen to be.

MR. X -

Got down to 1 x 2 mg ropinirole a night with only mild symptoms in the evening. On Thursday though I took quite large doses of di-calium phosphate and magnesium citrate, and Thursday evening my RLS symptoms were thoroughly moderate. Now trying to minimize calcium intake since it both increases mitochondial activity and decreases iron absorption.

However, I've now found this:

"We believe that iron deficiency, at some point in the earlier life of the patient, sets into motion well-defined changes in cellular iron homeostasis, which leads to paradoxical redistribution in cellular iron, possibly as a way to protect the cells from complete starvation and cell death. Once iron is returned to the body, the process should reverse itself and cells should return to a “normal” iron balance. However, the initially altered mitochondrial iron homeostasis may not return to a normal balance and instead persist in a "new" homeostatic state at least in the brain, which, over time, leads to the development of RLS. This proposed dynamic readjustment of mitochondrial iron homeostasis, following a low-iron insult, is similar to the HIF-dependent, cellular protective mechanisms that occur with repeated hypoxia."

"Altered Brain iron homeostasis and dopaminergic function in Restless Legs Syndrome (Willis–Ekbom Disease)", Earley et al, 2014

[Go to the RLS-UK website, "More" menu > "For Professionals", then click "Resources" on the page you are taken to.]

Very interesting paper – only wish I could understand it all!

JANE DOE -

Hi there. I've been hoping u continue to be well. Taking calcium or magnesium with iron is tantamount to violating one of the Ten Commandments. Iron is a jealous substance. It will tolerate no others before or after it. Plus magnesium in my humble opinion is a dopamine ANTAGONIST. So not something u want to take at night either.

[Mopsy1950]

I have been on iron under the doctor for about six months now my iron is now good , but my RLS isn't anybetter

[Hidden in reply to Mopsy1950]

Might depend on the type of iron. As the article indicates, Johns Hopkins switched their iron to a lower molecular weight one. And Mr. X uses ferrous bis-glycinate. VERY happy for your son

[Whitebuffalo in reply to Hidden]

I am confused, do you take 18mg or 25mg?

[Hidden in reply to Mopsy1950]

Sorry Mopsy I thought u said your son was good. U said your iron is good.

[Mopsy1950 in reply to Hidden]

That's ok didn't quite know what you meant at first ,,,the iron I take is Ferrous fumarate 200mg ( 65mgFe ) (FER AFT )whatever that one is ?

[nightdancer in reply to Mopsy1950]

Do you know what your ferritin level is, Mopsy? I got mine way up with infusions, and it also did not do anything for MY RLS. iron is not everyone's issue. If it was it would be so much easier to treat RLS, but we are a long way from the cause/causes of RLS. I do agree that with RLS, our dopamine receptors are blocked. But, being blocked can be one reason that the dopamine meds do not work for everyone. One of the leading researchers at Johns Hopkins wrote a paper last year, and said that he and several other experts are actually getting away from the dopamine thing though. AND, he is doing further iron studies now, is recruiting for a new study on how to keep the iron levels UP at a constant level.

[Hidden in reply to nightdancer]

RLS is by definition low brain iron and reduced dopamine transmission due to that low brain iron. Definitions change but for now that's it. If they infused you with iron sucrose, a form that cannot cross the blood brain barrier I have no doubt that it did nothing for. If you get iron to an RLS patient's brain, then by definition it should help everyone even if it's only temporary. Far and away better than opiates and the multitude of side effects including kidney and liver failure.

[nightdancer in reply to Hidden]

Iron does not help everyone, if I have learned anything over the last 22 yrs of studying RLS, no one thing works for everyone. My ferritin got up to 162, so it did absorb. Went from 6 to to 162.

[Hidden in reply to nightdancer]

Wow this must be a tough concept for people to understand.  Everyone with RLS, especially the GENETIC kind has low levels of BRAIN iron.  Everyone. You keep talking about your BODY stores of iron like it means something and it doesn't mean anything.  It's a matter of taking a type of iron that is able to cross the blood brain barrier. And it helps if you take it at a time of day when you tend to suffer from RLS. Mr. X is one of dozens who at the suggestion of myself and others (and Mr. X was the biggest skeptic of all) was able to switch out iron for their prescription drugs. Nightdancer, the only proper response from someone like you, who moderates these forums, is WOW, love it, GO Mr. X, GO JANE DOE. Instead you're doing everything u can to disspell it. 

[mysterylady60 in reply to Hidden]

I am new to this site, I feel totally confused with all the different information and options given...I'm scared where I am going with my RLS, I take Pramipexole for my RLS, I take 8 a day 4 at about 2pm and 4 at about 9pm and I am free of any symptoms as long as I stick to the time ( I have an alarm set on my phone so I don't forget, but am worried about Augmentation setting in, I am back at the doctors on 29/03/16 and am asking for referral back to the sleep clinic at Fazakerley hospital to see Dr. O'Reilly again, after he discharged me last year

So I'll see what happens when I see him, O'Reilly did give me ferrous sulphate to take, but I felt no relief from my RLS symptoms.  Any advice from the group would be appreciated.

[Hidden in reply to mysterylady60]

Like u I tried ferrous sulfate one time and it did nothing for my RLS. Some people say you have to take iron for awhile to see benefit. I disagree wholeheartedly. All I can do is tell u what I do and what Mr. X  in my post did. We take ferrous bis-glycinate the way you take Prami. Only we take it on an empty  stomach. Mr. X, like myself, got relief from the first dose. And like Prami you have to repeat whenever you have an attack.  I never took the DAs but I would assume that as you decrease the Prami your dopamine receptors will start to return to baseline. The idea is to get u off the Prami and onto the iron and then to figure out a way to get away from taking the bis-glycinate.   R u taking any other drugs that may be making your RLS worse than it has to be.  Such as statins antidepressants antacids melatonin a antihistamines HET calcium channel blockers sugar substitutes or over- eating. These things don't CAUSE RLS but they make it way worse than it has to be. Pregnancy, spinal injury, menopause even obesity can make RLS worse than it has to be. Please don't be scared or confused. That was the whole point of my post. To empower people to look for answers and be less reliant on prescription drugs. You have to read every word of the conversation between Mr. X and myself.   If it makes sense to you then I suggest you give it a shot. Some people on here are trying to demonize iron     There's 18 mg of iron in my kid's chewable vitamins. I take 25 mg of iron bis-glycinate when I have an attack and it stops it in its track for the night. Mr. X has daytime RLS and he takes 72 mg of the bisglycinate and he no longer takes his daytime dose of roping role. If u try it and like it then after about a week I would tell my doctor about it. Our brains are anemic not our bodies. If u take a form of iron that doesn't get into the brain then in all likelihood it will do nothing more then increase your body stores of iron while not providing the day to day relief we need. 

[Whitebuffalo in reply to Hidden]

What's so bad about melatonin? Our bodies produce it don't they?

[Whitebuffalo in reply to Hidden]

How did you find out that calcium channel blockers are bad for RLS?

[nightdancer in reply to mysterylady60]

What dose are the pills you are taking, mysterylady 60? 8 a day is a big dose and can lead to augmentation. Things do get confusing with RLS, because no one thing works for for every person. I have tried every med approved for RLS, and then the ones that are used "off label". The only thing that has helped my refractory Primary RLS is opiates, which are fast becoming the first line treatment for RLS, and this is according to Johns Hopkins as well as other RLS Centers. It all depends on the doctor, and what they know about treating RLS and how they keep up on the information. There are many options to try and treating RLS is all trial and error. Good luck at the doc's in 2 days, and let us know what he says. Many, many people have been in your same place, or are in the same place, so please do not feel alone. 

[nightdancer in reply to Hidden]

I always tell the truth, and I am only telling my own story. I am not here to be a cheerleader for people, I am here to share what I have learned in the past 2 decades. I will tell my story the way I want to, because it is MY story. Everyone had different experiences and the diagnostic criteria by the IRLSSG does nor define RLS as "everyone having trouble with iron". For people who are confused, all we can do is remember that no one thing works for all people with RLS, and I am VERY happy if a person can take iron only and does not have to take prescription meds. But that is not the norm. What works for one does not always work for the next person, and that is about the ONLY rule that goes along with RLS. Sorry if you do not like the way I tell my story, but it is mine to tell, and it is the truth. I am certainly not new to RLS, or groups, have had RLS since I was 14 and broke my back, and had the first ever online email support group online. So, I am also going by the stories I have heard from thousands of people over the last 2 decades. if you don't like the way I express myself, please keep on scrolling. I am not going to engage with you any more.

[nightdancer in reply to nightdancer]

anything else you have to say to me, Bisglyc, please do it in a private message. That is the rule.

[Mopsy1950 in reply to nightdancer]

No I don't know but they said last blood test showed normal (. as normal as I can be these days )

[Hidden in reply to Mopsy1950]

How good is your ferritin? figure? I read that the brain gets iron last, so it would take time, and some have only reported an improvement afterbgetting their ferritin up to 130. If there is brain onflammation it might not work, is my guess.

[Hidden in reply to Hidden]

Hi ASP. Hope u are well?  My ferritin is around 100 but I want it lower. The higher the ferritin the more the body clamps down on permitting iron from entering the bloodstream from the GI tract. I never want to get to the point where it is so high that it doesn't allow the bis-glycinate to enter. As you know there is serum iron and serum ferritin. The ferritin is stored and like u said it seems that the brain gets short changed. But the free floating iron in my blood does seem to be able to get to my brain to quiet my legs as well as many others.  Once I run out of the bis- glycinate which like most iron supplements is non- heme I am going to try heme iron supplements. Supposedly even more of that form gets absorbed. Lastly there is a company that has come up with an iron patch. My dream is that someday that is the first line of defense for RLS rather than DAs and opiates. 

[nightdancer in reply to Hidden]

exactly opposite of what the official info is out there, on this site, and any other reputable web site. The idea is to get the ferritin up and that is directly from researchers like Dr. Christopher Earley, and Dr. Richard Allen from Johns Hopkins. not making that up, ferritin levels are the first thing I learned about RLS. Experts want Ferritin to be at LEAST 70 now. How is your RLS at 100?

[Hidden in reply to Hidden]

Hi, the question was to Mopsy, I can see u have found the answer to your personal rls. Sorry ... clunky system. I,m not sure that reducing your ferritin will help, but you'd soon see. It looks as though your bbb lets iron through, as you say. For some I rhink that may not work, perhaps if there is some onflammation in the brain. Or in some cases the dopamine receptors perhaps are irrevocably damaged ... and no amount of iron can fix it. Really interesting. I absolutely agree that iron should be the first line of defence, and I think we should all watch our ferritin levels and childrens iron levels much more carefully.

[Hidden in reply to Hidden]

Thanks to your post I realized two things that have been bothering me.  The first one involves my failure to understand the mechanism behind magnesium.  I read that magnesium increases the brain's level of dopamine (which supposedly we have plenty of) and inhibits it's release.  I read release to mean release from our dopamine receptors. Now I don't think that's what the article was saying at all.  I think it stops it's release via other avenues other than the receptors.  The other thing I realized is that when scientists talk about our pathetic receptors it's not so much the receptors transport of dopamine but rather the receptor's ability to bind to dopamine.  Once the dopamine binds to the receptors I think it's smooth sailing from there.  Lastly, magnesium may help that dopamine BIND to those receptors.  So many people have found relief with magnesium that I knew that there had to be something there.  I've read so many articles on magnesium and not just in terms of RLS yet it escaped me how it could help us.  I THINK that's the mechanism behind it's success.  And like with iron, the magnesium has to cross the BBB to have this effect.  Magnesium taurinate and glycinate (in that order) are supposed to be able to cross the BBB.  Believe it or not, all these recent conclusions were reached when I googled brain, inflammation and hepcidin.  I've always believed that we with RLS have too much hepcidin floating around in our bodies.  Come to find out that Early discovered that there is too much hepcidin (the iron regulator) in the brains of RLS patients versus controls.  Hepcidin is released in the face of infection, disease, even exercise and it acts to reduce the amount of iron in the bloodstream.  Whew, that was painful

[Kaarina Administrator in reply to Hidden]

Prof K. Ray Chaudhuri was asked the question a few months ago "What is the recommended ferritin level for RLS sufferers in the UK?" 

His reply was" There is no recommended ferritin level. It depends on local laboratory levels which can vary slightly between hospitals.

Everyone with RLS should have their ferritin levels tested. A ferritin level test will look at your iron content. The concept is that low levels or borderline normal levels need to be treated with oral iron tablets and ferritin levels after retested 1 - 2 months. Ferritin levels need to be checked regularly, at least every month. "

(This question and his reply were published in the January 2016 edition of the RLS-UK Newsletter)

[SuperMNew]

Thank you so much for this insightful article!

[Hidden in reply to SuperMNew]

And thank you for the information regarding venous insufficiency. I know many people who have had their RLS triggered or made worse when they injured their spine. When it is corrected their RLS returns to baseline. The human body (all living things really) is an unbelievable masterpiece of nature and as infinite as the universe. So I have no doubt that venous insufficiency can trigger or worsen RLS and that it can be helped by resolving the problem. And of course food allergies can trigger or worsen RLS, there's not even a question about that. It's no different than anti-depressants worsening people's RLS. There's a whole cascade of chemicals that are released when your body reacts to a particular food. One of them interferes with the release of dopamine just as anti-depressants do. Most people who take anti-depressants or have food allergies will never go on to have RLS, but you and I are pre-disposed to it and those things will worsen it.

Anyways, do you think you can search the internet for others like yourself whose RLS was made worse by varicose veins and got relief via correction?

Here is a few paragraphs from Wikipedia on how our dopamine system works. As you know dopamine is transmitted out of the brain via dopamine receptors and travels down our spine via neurons to our legs and arms - called the peripheral nervous system. So it makes sense that when we injure our spines it acts as road block to that dopamine reaching our arms and legs. Why can't the same be true when our legs are screwed up?

Here's the paragraphs -

In the brain, dopamine functions as a neurotransmitter—a chemical released by neurons (nerve cells) to send signals to other nerve cells. The brain includes several distinct dopamine pathways, one of which plays a major role in reward-motivated behavior. Most types of reward increase the level of dopamine in the brain, and most addictive drugs increase dopamine neuronal activity. Other brain dopamine pathways are involved in motor control and in controlling the release of various hormones. These pathways and cell groups form a dopamine system which is neuromodulatory.

Outside the central nervous system, dopamine functions in several parts of the peripheral nervous system as a local chemical messenger. In blood vessels, it inhibits norepinephrine release and acts as a vasodilator (at normal concentrations); in the kidneys, it increases sodium excretion and urine output; in the pancreas, it reduces insulin production; in the digestive system, it reduces gastrointestinal motility and protects intestinal mucosa; and in the immune system, it reduces the activity of lymphocytes. With the exception of the blood vessels, dopamine in each of these peripheral systems is synthesized locally and exerts its effects near the cells that release it.

[Hidden in reply to Hidden]

Dopamine is what quiets our arms and legs and if it's not getting to them then they will be restless...hence RLS.

[SuperMNew in reply to Hidden]

Wow, Bisglyc, you are a powerhouse of info! Keep it coming!

[Mopsy1950 in reply to Hidden]

I've been getting my veins injected but it hasn't helped with RLS at all for me hoped it might work but just a waste of hard earned money

[Hidden in reply to Mopsy1950]

I would have been surprised if it had worked Mopsy. Sorry you wasted your money.

[Mopsy1950 in reply to Hidden]

Yes ,so many people seem to think it could be vein problems , I had some nasty ones which did need doing but at my age wouldn't of bothered ,but they do say it is one of the causes of RLS

[Hidden in reply to Mopsy1950]

The under, under lying cause of RLS is a mystery. But we do know that when a person is "pre-disposed" to RLS then there are certain things that can make it worse than it has to be. Pregnancy and spinal injury for example. With some people their varicose veins might make it worse than it has to be. And the list of aggravating substances is near endless: statins, anti-depressants, antihistamines, metformin, calcium channel blockers, melatonin, hormone replacement therapy, antacids, sugar substitutes.

[Hidden in reply to Hidden]

ie diet coke

[Hidden in reply to Mopsy1950]

By the way, add menopause to that list of aggravating conditions. I wish u better luck with whatever u try next.

[nightdancer in reply to Hidden]

IF they would study why pregnant women develop gestational RLS, that is a big clue, since it is so common. I feel really badly for the pregnant ones, since not much can be done to relieve their misery. I went through surgical menopause at the age of 29, and also, no effects on RLS one way or the other.

[Hidden in reply to nightdancer]

Prolactin levels which rise during pregnancy, (along with other hormones) acts as a dopamine antagonist.  So pregnancy is a dopamine Antagonist.    The vast majority of the world can become pregnant and never feel so much as a twinge of RLS but those of us pre-disposed to it can have their RLS triggered or worsened during this time.  Our understanding of RLS is profound.  No one needs to be scared or confused.  We ALL have lousy dopamine receptors caused by insufficient levels of brain iron.   And actually many of us can go through a good portion of our lives and not even know we have RLS.  For most of our lives those lousy dopamine transporters are hurling just enough dopamine down our spines to quiet our arms and legs.  Then something happens to antagonize that drip of dopamine.  Maybe it's a spinal injury that then acts as a road block to that drip of dopamine going down our spine.  The rest of the world has a stream of dopamine going down their spines and an injury does nothing to impede it.  Or we become pregnant (a dopamine antagonist) or we take an SSRI (a dopamine antagonist) and we end up with all out RLS.  Then the saddest thing of all happens.  A doctor prescribes a DA or an opiate which only further shrinks our already shrunken receptors.  Time for a revolution.  We need pain killers the way type 1 diabetics do.  They don't need pain killers, they need insulin because their pancreas isn't able to.  And we need iron (that gets to our brain) because our brains can't keep it's personal reservoir full.  During the day when a decent amount of iron is circulating in our bloodstream, generally speaking, we don't suffer from RLS because our brain can pick it up from our blood stream, not our bodily stores.  But when our serum iron levels drop at night (the whole world's does) and our brains can't get enough, we end up with all out RLS.  The rest of the non-RLS world is able to store a little iron away for a rainy day, so to speak.  Our reservoir is always bone dry.  So the rest of the world goes to their  brain iron bank, sucks some up, the dopamine transporters (now well fed) continue humming right along and the non-RLS world goes to sleep.  No iron in the brain bank, no sleep.  By taking the bis-glycinate at night I am literally sneaking my brain some much needed iron.  Sweet dreams Nightdancer.

[Hidden in reply to Hidden]

Pregnancy is also a major user of iron. Probably that simple.

[Hidden in reply to Hidden]

Yes, could very well be.

[Whitebuffalo in reply to Hidden]

Thank you, I will try.

[Hidden in reply to Mopsy1950]

RLS is neurological has nothing to do with our veins. They use to think it MIGHT be, but things have moved on since then.

[Hidden in reply to Hidden]

What does antacids such as Tagamet and our stomachs have to do with RLS? Yet the whole RLS scientific community believes it can aggravate RLS. Same for varicose veins, pregnancy, spinal injury, menopause.

[nightdancer in reply to Hidden]

Where do you get the idea that the "whole RLS community "believes that antacids and tummy issues can cause RLS?" I can promise you it is not the entire community. Can give you names of researchers and experts. Also, antacids MUST be taken 2 hrs before or 2 hrs after taking ANY other meds, or the antacid breaks down the other meds too fast and they do not work the way they should. Now THAT they agree on.

[Hidden in reply to nightdancer]

Dr. B's website. He's the only one who knows anything about RLS right

[nightdancer in reply to Hidden]

HE obviously is no the only one, my dear, but is one of the BEST. I am well aware of many experts and specialists.

[nightdancer in reply to Hidden]

I have mentioned Dr. Earley many times besides the Dr. Buchfuhrer. The doctor that helped me the most in the beginning was DR. Wayne Hening, who picked up Dr. Ekbom's research from the 40's, in the 70's and if not for Dr. Hening, we would not have the info we have now. he was a true pioneer, may he RIP. Dr. Breus, Dr. Silber, and so on, ALL great RLS researchers and RLS doctors.

[Mopsy1950 in reply to Hidden]

Wish I'd known that this time last year

[nightdancer in reply to Hidden]

yep, things have moved on from the veins, Elisse!

[Hidden in reply to Mopsy1950]

So painful Mopsy I know. I wish I had a crystal ball and could have advised u not to.

[Mopsy1950 in reply to Hidden]

Thank you

[nightdancer in reply to Mopsy1950]

I know of no one in my groups that I have had for 22 years that have been helped by "vein therapy". That is out of 6,000 people. That is an OLD theory going back to the 40's. BUT, one can only try, right?

[Mopsy1950 in reply to nightdancer]

That was an expencive ,wishful mistake ,,

[nightdancer in reply to Hidden]

I have never found a food that even affected my RLS even a little bit. OF course, sugar, caffeine are the obvious things to cut out. But I have done an extensive elimination diet over a decade's time, and I literally cannot even blame sugar. So, I am looking at other things.

[Hidden in reply to nightdancer]

Ok but I know you are not telling us that food allergies and intolerances are not making some people's RLS much worse than it has to be.

[nightdancer in reply to Hidden]

AGAIN. I am saying for ME.

[Hidden in reply to SuperMNew]

Hey Super, get a load of page 8 of the following easy to read article on RLS.

sleepdisorders.about.com/od...

You know more about RLS than most on here, don't let anyone tell you you're wrong about anything.

[SuperMNew in reply to Hidden]

Wow again, Bisglyc! Thank you for such good information. You are a blessing, indeed!

[funnyfennel]

I do believe that my severe anaemia that I suffered when younger caused my RLS.

[Hidden in reply to funnyfennel]

Never too late is my motto😔

[Hidden]

I agree, Jane Doe. You change native cultures by westernizing them, especially with drugs, and you'll see all kinds of health issues show up. It's been proven- change their diet with refined sugar, refined carbs and refined rice, and bingo, chronic disease shows up. Processed foods and drugs are our undoing, in my opinion. And always bear in mind, drug companies don't care about your health- they are ONLY looking at the profits. The same can be said about McDonald's!

[Hidden in reply to Hidden]

Now what? How do we un-ring that bell? Even if we can"t our scientists have done an outstanding job of understanding the mechanism behind RLS. I have never discussed my RLS with a doctor. As long as the iron continues on its ten year trend I won't have to. Oy our poor iron deprived brains.

[nightdancer]

I had iron infusions, got my numbers way up ,and it made no difference. Wondering where this looooooong conversation came from? Mr X and Jane Doe??

[Hidden in reply to nightdancer]

very helpful

[nightdancer]

Also, no one should ever start iron therapy unless you are tested and you know your ferritin is low. To simplify, with RLS, our dopamine receptors get blocked, so the iron does not get to where it needs to go. Hence why iron does not help as many people as once thought. But, Mr X in that conversation is pounding iron, I hope with his doctor's permission. Iron overload is literally deadly, so the tests need to be done.

[SuperMNew in reply to nightdancer]

The type of iron (Ferrochel) that Mr X is using is a different kind of iron, not like the regular ferrous sulphate, which is easy to overload and can be dangerous. Ferrochel is a new type of iron chelated to an amino acid, and extensive testing has shown that it is virtually impossible to overload on it. What the body does not use, it throws off. It is so effective, third world countries are using it in their food supply to help alleviate iron deficiency.

[Hidden in reply to SuperMNew]

I did not know that. Love it. My main concern is that you feel great all of the time

[SuperMNew in reply to Hidden]

Well, thank you! I appreciate your concern. It's been a long, long journey for me, but I will not give up until I exhaust every avenue available to me to get some answers. God gave me a perfect body when I was born. Somewhere along the line things began to break down (could it POSSIBLY be aging?? [grin]). I want to find a way to get back to reasonable health AND the ability to sleep all night without drugs! Bless you!

[Mopsy1950 in reply to SuperMNew]

Same with me , ahhhhh sleep what is that ,my daughter brought me one of those fit bits for birthday very interesting for sleep patterns approx 3-4 hrs sleep and the rest ,,,restless ,or up ,I know my nights asleep aren't RLS ,so my question is do we who have both problems have any normal sleep. ,can never remember the name of the night one ?

[nightdancer in reply to Mopsy1950]

PLMD-Periodic Limb Movement Disorder, Mopsy. Those are the involuntary movements 70% of us have. It is also possible to have PLMD only, hence the need for sleep studies.

[SuperMNew in reply to Mopsy1950]

I know what you mean. It's been a long time since I've had a good night's sleep. When I take 40% Mucuna Pruriens AND iron at night, I can manage 6 hours.

[Hidden in reply to SuperMNew]

In my very limited experience I find that not all iron is created equal. What kind are u taking? Mr. X and I like ferrous bis- glycinate. There are people on here that would love to get 6 hours. That means you just helped a whole lot of people. X

[SuperMNew in reply to Hidden]

I am taking Ferrochel Iron by Albion laboratories. (I purchase Swanson's Ferrochel. It is cheap and not made with soy.) oxylentblog.com/2013/05/09/...

It is the ONLY iron I will take, and I'm taking quite a bit of it. I start about 7 p.m. with three 18 mg. tablets of iron on an empty stomach. About 8 p.m. I take four capsules of Mucuna Pruriens (40% L-Dopa from Barlowe's Herbal Elixirs company). Around 9 I take three more iron capsules. About 10:30 or thereabouts I take three more iron and a 5 mg. Melatonin to help me sleep. If I am interrupted in the middle of the night with any symptoms, I take two scoops of Zandopa in water, or 4 more Mucuna Pruriens capsules. However, Zandopa is very quick-acting L-Dopa, and I can get back to sleep very quickly. This works for me. I encourage you and others to experiment to see what works.

[Hidden in reply to SuperMNew]

😵😵😵 That's me screaming. Melatonin might be making your RLS temporarily worse. I had mild RLS about five times a year all my life even during pregnancy until I started taking melatonin. I was ready to end my life when I read on the Internet about iron. So it was melatonin followed by restless BODY followed by iron for years. Then I read (I believe on this site) that melatonin is a no no. The day I stopprd the melatonin is the day my RLS went quiet. Oddly enough I believe that melatonin in the long run might actually up- regulate our receptors if you can handle the temporary worsening of symptoms. Look at it this way, the dopamine agonists force the release of dopamine and we feel good temporarily. In the long run it down regulates our receptors. And our receptors are bad to begin with!!! Now melatonin antagonizes the release of dopamine- just the opposite of the DAs. So maybe in the long run it might up- regulate our receptors. If I had slightly larger gonads then I would face my mortal enemy (melatonin) by taking a quick release kind in the morning. But I can't I don't want to be tired and have RLS all day long in the hope that it will eventually up- regulate my receptors. So are you willing to give up the melatonin for one night to see if you can sleep 8 hours

[SuperMNew in reply to Hidden]

Yes, absolutely! I have another, all natural capsule my health care professional gave me to use for sleep. It's called PHENITROPIC. I'll take your advice! Thank you so much!

[SuperMNew in reply to Hidden]

I'm so glad you didn't' follow thru with "taking your life." But I know it can get really bad when you can't sleep. God has spared you for a reason!

[Hidden in reply to SuperMNew]

I'm just part of a chain reaction Super.  I never got the chance to thank the person whose post I read about taking iron at night many years ago now.  And but for my sensitive stomach I would have bought ferrous sulfate and probably got little to no relief.  So instead I am "paying it forward" as you are doing now by writing about your success against RLS. 

[SuperMNew in reply to Hidden]

Good for you!  I'm taking your advice tonight and NOT taking Melatonin.  I'll see if that makes a difference.  Thanks again.

[nightdancer in reply to Hidden]

My infusion was iron dextran, so not iron glucose. NO glucose in the dextran.

[nightdancer in reply to SuperMNew]

the iron they use in the infusions, SuperMNew are not the same as oral iron, it is normally iron dextran and can have wicked side effects, so they check your vitals every 20 minutes and actually check you into the hospital for the day. That is in the US.

[SuperMNew in reply to nightdancer]

I am totally new to this issue.  I have been taking ferrous bis-glycinate orally at night, but probably not enough because I only get a couple or three hour's sleep before I have to take more.   I tried ferrous sulfate and it hurt my stomach, not to mention locking up my insides!  (frown) 

[Hidden in reply to SuperMNew]

What happened the night you did not take the melatonin?

[SuperMNew in reply to Hidden]

You know, now that I think about it, the next day I felt like the withdrawal symptoms from stopping the ropinirole were gone.  Could that have been a result of NOT taking the Melatonin?  Hmmmm.  The timing is pretty interesting.

[Hidden in reply to Hidden]

Now that the melatonin is gone you should sleep like a log with the iron.  Just take right before bed.  And yes, it does take at least 45 minutes to kick in.  And if you awake too early take a little more but don't take the iron in the early evening and then later in the evening.  Once and done!

[SuperMNew in reply to Hidden]

Ok.  I'll take your advice and see how it works for me. 

I had my third Vein treatment today, and the doctor and nurse both assured me that I will feel better very soon!  I sure hope so!

[nightdancer in reply to SuperMNew]

I totally agree with the no melatonin, since it does block the dopamine neuroreceptors. it should only be taken, really for 10 days at a time at the most, and for things like jet lag. Most sleep doctors will agree with that one. It is only for short term use to reset a sleep schedule in a different time zone. Really is not much help for RLS.

[Hidden]

Oh heck, not all the iron stuff again. How many times is that now...?

[Hidden in reply to Hidden]

Hellllloooooo, Mr. Administrator, does Elise's above post seem very polite to you?  Especially in light of how hard I am trying to help people.  [TEXT DELETED - unnecessary inflammatory comment ]

[nightdancer]

Since we started with info from Johns Hopkins, here is a review done of 2 studies and the reviews show why these were PROPER studies. The dopamine one was 52 weeks, instead of the usual 12. The opiate study was done for 40 weeks, and then 40 MORE weeks. This is the way it should be done. Also he states, the reason so very few studies are done on opiates and RLS, is because they are literally the cheapest meds used to treat RLS, and so as far as the drug companies go......"no money means no study". That is SAD.

hopkinsmedicine.org/neurolo...

This is some good info, for sure.

[Hidden in reply to nightdancer]

Page not found when I click on it. I posted the latest studies on opiates under knees post

[Hidden in reply to Hidden]

Under JMWE'S post

[nightdancer in reply to Hidden]

Well, it is on the same web site. the Johns Hopkins web site in your original post, so should be really easy to find for someone as smart as you. Bisglyc. (clever name abbreviated for iron bis-glycinate) more clever than most of your other screen names (7) that you have used before. So, you should be able to do a quick search on the Johns Hopkins site to find the studies I listed, and Dr. Earley's reports. I am suing the same source of info that you are using, plus several others. 

[Retren in reply to nightdancer]

I took opiates for many years got complete relief immediately,no side effects and no withdrawal symptoms when it was stopped abruptly. I wish I could be allowed to take it again because the past year I have had the wretched condition practically 24hours a day.I really do not know how I am coping.I used to tell a close friend who was hysterical put your back to the wall and think of the nurses during Ww2 you,r British and somehow one marches on.My current medications are not very effective despite valiant efforts from my neurologist.

[Hidden in reply to Retren]

Retren I see that you have pernicious anemia.  Is that under control?  My understanding of PA is that you need shots of b12, oral won't cut it.  I also understand that without b12 you can't absorb iron from your food.  So, yes, if you have out of control PA, then I am sure you have out of control RLS.  Opiates are not the answer.  They never are.  B12 is the answer for you if your PA is out of control.  Also a supplement called methylfolate (not folic acid) is supposed to do people with PA a world of good.  I read one study where people with RLS (not PA) were helped by methylfolate.  Wow, thanks Retren.  I forgot about that study.  Yet another substance worth having in the cupboard and trying.  For now if you're desperate, and anemic, and can't see a doctor for awhile, you might want to try iron-bisglycinate.  One or two tablets on an empty stomach away from all other supplements before bed.  I'm sure it will take you several days to get that iron.  Not to be rude, but orgasm helps as well.  One woman used to fall asleep on her knees laying across an ottoman.  Good luck, let me know how it goes.  Did I also see that you had a heart attack?  Was that due to ridiculously low levels of iron from the pernicious anemia.  People tend to think that too much iron can lead to heart attack but I would be that more people have a heart attack from too little iron.  Call it a hunch. 

[Retren in reply to Hidden]

To bisglic yes my pa is under control thank your tried methilfolate and got sundry side effects. I think my next try for relief will be the relaxing pad.my cardiologist blamed the opiates for my heart attack but I really am not fully convinced.

[Retren in reply to Retren]

Myself I think it is advanced age and everything is wearing out.

[Hidden in reply to Retren]

Nonsense!  Not to sound like a broken record, but I don't care, you have symptoms 24/7/365 and I would try iron-bis-lycinate, one tablet on an empty stomach.  You live in US and it is cheap and readily available at any health food store or Whole Foods store in US.  It is called "Gentle Iron."  About $12 for a bottle of 60.  Maybe less money.  As long as your stomach is empty you can try it night or day but no more than two in one day.  If you like it after a few days you must inform your doctor.  If it doesn't work I will refund your money to you or donate to charity of your choice. 

For my own education, what determines whether or not your PA is under control?  What is your red blood count?  What is your b12 level?

[Hidden in reply to Retren]

Retren, you will also have to tell us all medications you are taking aside from the Tramadol.  For instance, are you taking statins, calcium channel blocker, metformin, melatonin, antacids, anti-histamines, anti-depressants?  Any and All of these substances can and will make your RLS much worse than it has to be.

[Hidden]

Her veins weren't making her RLS worse. For some it does.

[Hidden]

I posted the article for another member who is undergoing vein therapy right now. I am wishing her well as I'm sure u are. Mopsy joined in the conversation. I feel very bad that it did not work out for her. If I had a crystal ball and could foresee that she would be one who would not benefit from this therapy then with hindsight I would advise her against it. Happy Nightdancer?

[Madlegs1]

Wow- what a lot of issues going on here!

May I add my tuppence worth?.

As you have noted- high ferritin is not an answer- I have 1200 and Dr B says it doesnt get through to the brain.

Food certainly affects RL- I find rising agents- baking powder is very potent- and artificial colours- especially yellow and red- are dynamite. I'm in process of changing from Mirapex to tramadol. First night on 100 tramadol I didn't sleep a wink- no RLs but like a caffeine high , and hypersensitive. Checked the med info- quinaline yellow E104. I've read in other threads of people being affected by Oxalic ( tomato, celery etc) foods, and even one unfortunate who eliminated everything from his diet (FAB diet??) Only to discover it was the binding agent in his pills. It seems we are all truly unique.

The caffeine one is based on a study from 1978 based on one individual in a non RLS experiment. I have found caffeine has no effect on my RL severity. Obviously it has an effect on my nervous system- but does not give me RL.

That Hopkins paper by Dr Christopher Early is very interesting- especially the role of genes in iron regulation. It seems these may be affected even in early gestation- (and I'm going further in suggesting pre pregnancy possibly ) --- so there's still a long road to travel.

My daughter got RL in her third trimester and found relief from applying mg/ water solution to her legs. Can sting a bit for some - but does give prompt relief for some people.

One last issue- there seems to be a lot of confusion about what RLS actually is - PLM is not RLS- though may be common to RL sufferers. Other people talk about dead legs, spasms , stiffness , soreness , pain etc - none of which are strictly in the RL syndrome- and may well be symptomatic of more serious medical issues.

All I can say is keep on with the research and experiments and posting on these threads-- it's really a case of the nutcases having to run the show.😢😆 Cheers.

[Hidden in reply to Madlegs1]

Dr. B got your iron stores up to 1200 and told u it doesn't get to the brain?  I believe the right kind does. And I believe there are certain oral kinds such as ferrous bis- glycinate that is able to cross the blood brain barrier. The problem is nothing good lasts forever. I have to take an iron pill with each attack and for some people that is every night. And even with infusions they too need to be repeated. Think of our pathetic dopamine receptors like flowers. Our receptors need iron the way flowers need water.   What happens to the flowers in your garden if it hardly ever rains?  They wither and die unless you water them.   Our brains can't seem to get much iron from our stores. When we have RLS it's like our brains are calling out for iron. This usually happens at night when everyone's blood iron level drops. Only it doesn't affect the whole rest of the world because their brains have some iron stored in their brain tissue. Our brain tissue is bone dry as far as iron goes.  That's why when I get an attack I give my brain some iron.  It's only when the right kind of iron is circulating in our bloodstream that our receptors can suck it up and perk up and release some dopamine down our spines to quiet our arms and legs. 

[nightdancer in reply to Hidden]

This is why Dr. Earley reviewed the 52 WEEK study on dopamine meds. He is now personally recruiting people for a LONGER iron study that covers the same amount of time. His feeling ( and he is the one from Johns Hopkins) to see why we cannot keep our iron stores up over a long period of time, instead of a puny 12 wk study, which he clearly explains. he also did a 40 wk plus 40 more weeks on opiates and RLS, and it was found that a majority of those patients did great on those meds after the iron was tried, and all other meds approved for use in RLS in the USA. Again he is from Johns Hopkins, so the same place this original poster started from in the first place. They did the looooong study on the dopamine meds to show that augmentation can show up a long time after you start the meds.  These were proper double blind studies, done with over 1,000 people on all of them. IF my link is not working above it is so easy to google "Dr Christopher Earley reviews studies on opiates and dopamine meds. " Many people in my groups are taking part in his iron study that he is still  recruiting for. I DO follow other doctors besides Dr. Buchfuhrer, but Dr. B literally saved my life, so he gets a extra gold star from me, so that is probably why I mention him more than others.

[SuperMNew in reply to Hidden]

Bisglyc, how much Ferrochel do you take to quiet your legs?  Or do you take another brand of bis glycinate?  When do you take your iron?  We have talked before, and I am an avid fan of Ferrochel.  It just doesn't last long with the dose I take.  So, I'm interested in your protocol.

[Hidden in reply to SuperMNew]

Hi Super, I've been thinking about you.  The brand name of iron that I take is called Gentle Iron.  Like Ferrochel it is ferrous bis-glycinate.  I actually open the capsule up and pour it into water.  It really does not dissolve and I doubt that step makes a difference.  Anyways, just the fact that you get relief is a good sign.  As I said before, I would stop the melatonin and even the Mucuna for a few nights.  The capsule I take is 25mg.  When I was taking 1.5mg of melatonin many years ago now, one tablet was enough.  When I went to 3mg I had to take two capsules.  The iron has to be taken on an empty stomach and preferably right before bed or during an attack.  It would allow me to sleep the whole night.  So how long (or short) does the iron last for you?

[SuperMNew in reply to Hidden]

My capsules are 18 mg of ferrous bis-glycinate.  I figure I am not taking enough.  I take four capsules at bedtime but it lasts only a couple hours--three at the most.  So I do not get a solid night's sleep.  When I take the iron with the Mucuna, I get a longer sleep cycle.  Interesting.  Tell me how much you take and when you take it?  And tell me something about you.

[Hidden in reply to Madlegs1]

Mad legs you are my poster child in terms of why I whole heartedly disagree with the premise that the higher the iron stores the better.   Yours is a whooping 1200 yet you still have RLS. I have seen oral iron poop out on people once too often, especially with ferrous sulfate and especially when they follow the advice of their doctor and take it three times a day. My interpretation is once the iron is stored our brains won't ever see much of it.  And then if the stores are really high the body will clamp down on iron coming in from the GI tract. It's a safety mechanism put their by Mother Nature and not something exclusive to those with RLS. I NEVER want to get to that point. It is that daily influx of iron that is unbound in my bloodstream that gives my brain the chance to get some. So the iron I take at night to feed my anemic brain is stored by the dawn's early light. And I must repeat with each attack. Would u like to know why I think infusions work. Well it's not because those stores go up. It's because while that iron is being infused and before it gets stored our dopamine receptors gorge themselves and maybe a little or a lot of iron gets deposited into our always depleted brain iron reservoir. And maybe, just maybe, not only do our existing receptors grow bigger but we may even sprout some new ones. Alas, like flowers without water eventually those receptors wither because they're just not getting enough day to day or should I say night to night iron.  If people actually do come off the meds after the infusion then great because those are just a drag on the receptors that will hasten their demise.  And if the hospital uses a type of iron that can't cross the BBB then you will get no relief at all from infusions. You will just get elevated iron stores which in my opinion and tour experience does nothing for the RLS. 

[SuperMNew in reply to Hidden]

I am going to ask my doctor to order an iron infusion for me.  Does Ferrous Bis-Glycinate come in a form that can be infused?  And is that what you have used? 

[Hidden in reply to SuperMNew]

No infusion for me.  I'm anti-infusion unless you're anemic.  And I believe in keeping ferritin stores on the low end of normal.  The higher the ferritin stores the less your body will allow iron in from the GI Tract.  I've noticed a poop out reaction with iron.  A person gets their stores nice and high and they continue to take the iron but all of a sudden the RLS comes roaring back. 

Do you know where your ferritin is at?  If you've been taking large doses of iron for a long time then your body may be shutting down its entry at the gut level?   Madlegs' serum ferritin is 1200, mine is 100, but she still has RLS.  I still have RLS as well.  So to me that says it's not the stores that matter it's that free floating, unbound serum iron that counts.  Once it's bound it's all over.  So a very bioavailable form of iron taken right before bed is what counts.  Less is more is my motto.  But please Super discuss with your doctor.   Remember the Popeye the Sailorman cartoon.  He would chug a can of spinach and we could see his biceps come bursting through his shirt and then eventually retreat back to little tiny ones that hung on the underside of his arms.  That's our receptors on infusions.  But ultimately they will return to their pathetic natural state. Sometimes the infusion last three months, six, twelve, eighteen?  All of us have to really think through this.  Our happiness and well being depends on it.  What makes sense to you?

[SuperMNew in reply to Hidden]

Yes, it makes sense.  I have been searching for answers for years!  The research from reputable institutions is to be heeded, I think.  My doctor knows nothing about all this.  (sigh)  In fact, I am educating him.  I have been so desperate for sleep (I have refused drugs up until about 6 months ago) that I am willing to be my own human experiment to see what might work for me.  The Mucuna helps; so does the iron.  When I use them together, I get a longer period of sleep.  I don't know why.  My son-in-law is a medical doctor and advises the drugs.  I acquiesced at Thanksgiving because I was getting NO SLEEP, and he talked me into trying ropinirole.  I slept 8 hours the first night.  As you can imagine, I was so thankful.  But that soon changed.  Now, ropinirole doesn't work more than 2 hours, and I am NOT going to increase my dose of that drug until I am in a worse situation than when I started.  And that's my impression of taking all these drugs.  It comes back to bite you in the end.  Badly!  So, I quit the ropinirole a week ago, and just yesterday felt that the withdrawal symptoms have subsided.  I'm back to my plain ole RLS with no augmentation.  I am also undergoing the Vein Therapy which I am hoping helps me get over this.  It's one day at a time for me.

So you are saying more iron is not the answer?  Did you experiment with your threshold level to find what you needed at night?  When I take iron at the first sign of the jerking at night, it takes sometimes a half hour or more to take affect.  And my last thought is WHAT IN THE WORLD DO YOU DO WHEN THE IRON STOPS WORKING?

[Hidden in reply to SuperMNew]

The iron has never stopped working for me.  My iron levels got up to 100 when I was taking the iron every night because the melatonin causing me to have restless body.  I always just took the one pill recommended on the bottle and it always worked until I went up to 3mg of melatonin then I had to take two iron capsules.

Come on let's figure this out.  What could be making your RLS worse than it has to be besides the veins?  Do you take HRT or statins, or calcium channel blockers, or antihistamines or anti-depressants or antacids?  How's your weight, your spine?  Sadly with age it seems our RLS does get worse probably because our lousy receptors become lousy and OLD receptors.

There's these drug websites on the internet where people are always looking for a better high.  They know that one way to do this is to up-regulate their receptors.  According to these sites and more legitimate ones if you do a weekly fast (less than 600 calories) this will help to regulate.  Or just consistently under-eating day to day - no more than 1,000 calories a day will up-regulate your receptors.  Supposedly this works even if you're obese or thin.  Lastly I read that anerobic exercise will increase receptors.  There's also something called the Uridine stack which includes Uridine monophosphate, choline and fish oil that's supposed to up-regulate.  Not two seconds ago I read that fish oil is supposed to help dopamine bind to the receptors.  Something we are sorely in need of.  I wouldn't take those things at night, only in the morning.  I wouldn't try those supplements just yet anyways.  I am trying and I see no difference yet. 

[SuperMNew in reply to Hidden]

Wow!  I like your approach!  I take natural hormones, no other drugs.  No statins,  No calcium channel blockers.  No antihistamines or anti-depressants or antacids.  My spine is good, although I fell on the ice here in Missouri in 2000 and broke my back.  But I've had RLS way before 2000.  Doc said I have no arthritis.  I have cured my body of cancer twice using oxygen therapy--no radiation or chemo.  Wouldn't touch that stuff with a 10-foot pole. My weight is 135 on a 5'7" frame (doc says it's good).  I walk daily, cut my own grass, do my own housework, go to church regularly, study Hebrew, teach a Sunday school class, pray and study the Bible almost daily.  I take a lot of vitamins regularly.  I have been a school teacher for years and recently retired; hence, the vein problem in my legs because I never sat down and taught my high school students.  I walk constantly.  I have done a lot of fasting in my life, sometimes twice a year for 15 or more days at a time.  Fish oil has been on my vitamin list for some time. 

See anything in this bio that raises a red flag? 

I have searched for over 30 years for a cure for RLS.  I've tried special diets, acupuncture, vitamin therapy, oxygen therapy, ropinirole for 6 months (but have stopped that and will not continue drugs).  Now that I've found Mucuna and iron, I'm trying that and have had some success. 

What about you? 

[Hidden in reply to SuperMNew]

What do you mean by natural hormones?  Bio-identical?  Hormone replacement therapy while making a person feel great by day can cause RLS by night.  People have stopped HRT and watched their RLS symptoms diminish as well.  Spinal injuries and cancer can worsen RLS as well.  Like you I've had RLS since young but it was mild and intermittent.  Even during pregnancy I considered it to be mild.  The melatonin turned my RLS into a monster of unimaginable proportion in my 40s.  At 50 I believe my RLS is just getting worse due to age and menopause. 

I believe that we have all come to earth with a plan and a purpose - most likely for soul schooling.  A plan we set in motion long before we were born.  I believe that all matter has some type of consciousness, so not only living creatures but  rocks, water, etc.  A universal consciousness that is based on love.  Not the love  between husband and wife or a child and parent but love as an all encompassing fundamental force.  I do not believe in the God of the old testament but rather a "Source" what the Native Americans called the Great Mystery.  I believe that Christ, Buddha, Krishna understood this oneness and were truly transcendent in their thinking but never wanted to be worshipped as Gods.  I don't believe that any transcendent being wants to be worshipped.  So I do not worship but I do try to learn from their wisdom. 

[SuperMNew in reply to Hidden]

Hormones are bio-identical, and I did stop them for a while to see if they were causing my distress.  No change.  I started back with both natural estrogen and progesterone.  (I go to both a naturopathic doctor and a medical doctor.)  I've had my blood tested for food allergies, and have then stayed away from foods that I am allergic to.  I eat NO wheat, corn, gluten, eggs, dairy, sugar, and about 10 other things.  But this type of food elimination diet has only been within the last 6 years or so.  My RLS started like yours, in my 30s, and was intermittent.  It has gotten worse with age.  This seems to indicate it may very well be my leg vein reflux.  Anyway, that is my next pursuit.

I, too, believe there is a plan for each person born.  I believe in the God of the Bible, and Jesus Christ as the only Son of God and through Jesus is the only way to reach the Father in heaven.  I've seen too much evidence that to me proves it is true.

Oh, and one other thing.  I am a coffee drinker.  I have been since I was in college.  But I even stopped that for a time to see if it made a difference.  I did not.   

[Hidden in reply to SuperMNew]

"Let he without sin cast the first stone."  Always gives me pause.  If you believe then I believe.  And I believe together we can get some answers.

[SuperMNew in reply to Hidden]

Most definitely I believe.  To understand the phrase, "Let he that is without sin cast the first stone" should be interpreted in light of the culture in which Jesus.  The religious leaders of that time were very corrupt (most, not all), and they would gladly accuse someone of sin when they themselves did the same thing.  Jesus was holding them accountable for their own sin.  It is temping to take Scripture out of its context and put our own meaning to it.  That should not be.  The whole story of this woman and the situation is quite interesting but too much to go into here in this limited space. 

[Hidden in reply to SuperMNew]

How was your RLS while you were fasting?  OMG 15 days.  I hope it was juice fasting?

[SuperMNew in reply to Hidden]

You know, I can't remember how the RLS was during the fast.  Hmmmmm.  That's an interesting question.  Yes, it was juice fasting.  The way my legs react when I double them under me and sit on them makes me think mine is a vein problem because my legs feel sooooo good when I sit on them for a while. 

[Hidden in reply to SuperMNew]

Yep, just about anything can make RLS much worse than it has to be, including varicose veins.

[SuperMNew in reply to Hidden]

An additional thought.  It seems to me that when I read all the research on Ferrochel (chelated bis-glycinate) that they mentioned something to the effect that it is absorbed even with food.  It would have to be because Ferrochel is being added to the food supply to boost the nutrition of several third world countries.

[Retren in reply to SuperMNew]

I take fish oil and have for a long time ,at one point I thought it made my RLS worse and cut it back.

[Madlegs1]

Sorry , Bisglyc- I should clarify that Dr B is Buchfuhrer  from the California group. I have very high  natural?? Ferritin levels- am not haemacromatic and woefully well apart from severe RL. The medics will have a wonderful time sticking needles into me.     I had asked Dr B why I had RLS while my ferritin level was so high and that was his reply-that it didn't  get through to the brain.         I am following your conversations about iron supplementation with inerest, but will wait till I get my ferritin status sorted before doing anything else .  Iron poisoning is too easy to achieve. ! Thankyou for your  reply. Cheers. 

[Hidden in reply to Madlegs1]

Ok you have naturally high body stores of iron. Water water everywhere but not a drop (for our brains) to drink. Be well 

[Mopsy1950]

I must say I hope I didn't start all this confusion about the iron ? and veins ,my apologies if that was the case didn't mean to start an argument 

[nightdancer in reply to Mopsy1950]

no arguing here. Just telling my story and my experience.

[Hidden in reply to Mopsy1950]

No not at all.  Sometimes a raucous discussion is the best way to come up with solutions.

[Daragh]

I would like to remind users of this forum of our rules.

The administrators of the site are volunteers with normal everyday commitments such as work and families. We simply do not have the time to monitor all the posts and we only intervene if absolutely necessary. For example, we may delete posts if we feel individuals are being too personal or if there is unsuitable content such as someone trying to sell something. We try to keep the forum as a safe place for people to exchange information and support each other. We do not wish to be overly controlling and 'big brother like'. Naturally there will be differences of opinion on the site and we can't step in every time that happens. Therefore, there has to be some self regulation. We depend on you to act in a respectful manner towards each other.

Please can we ask that everyone remembers the following:

If there is conflict or a discussion between a small number of individuals, those affected should do everything they can to keep the disagreement between themselves and to work towards a solution. Very often the solution will simply be that you agree to disagree and do not engage with each other any further. Name-calling is not a solution. Posting your private messages on the forum is not a solution. If you wish to discuss a concern with a specific person, please message them privately and not in a public capacity. To send a message, click on the person’s icon image or their name and it will bring up their profile. Click on ‘send me a message’.

Posts should be of interest to the wider RLS forum rather than just individuals. Posts should never be used to 'have a go' at someone else. I have noticed a few people trying to circumnavigate the 'no names' rule by putting up statements which clearly are directed at particular individuals but which are often poorly disguised as something else. Please, let's stop this.

Please support each other and if someone expresses views you disagree with, please think carefully before you respond. We all have different views - we should all be allowed a voice, to express an opinion in a safe place where we won't be ridiculed. Goodness knows most of us have been ridiculed for years for having this condition so we should do our best to ensure this stops when it comes to the forum. However, we should also be ready to be challenged for what we write without feeling we are being attacked just because someone else has a different view. We are all here because we need the advice and support of other fellow sufferers.

We (the administrators) will help where necessary but please try to adhere to the rules of the HealthUnlocked forum, which can be summarised in just a few words... treat each other with respect.

Finally, if you post a comment which seeks to intentionally inflame situation you will be immediately banned from the forum. If you are unable to communicate your thoughts with respect, please find another forum.

[Retren]

After the comments posted am not sure if I am transgressing or merely adding my two cents worth.