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Restless Legs Syndrome

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Breakthrough in RLS

Oldcolner profile image
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The Physiological Society. "Breakthrough in treatment of restless legs syndrome." ScienceDaily. ScienceDaily, 14 November 2018. <sciencedaily.com/releases/2....

Until now it was thought that RLS is caused by genetic, metabolic and central nervous system mechanisms. For the first time the researchers show that, in fact, it is not only the central nervous system but also the nerve cells targeting the muscles themselves that are responsible.

new research indicates that the involuntary leg movements in RLS are caused by increased excitability of the nerve cells that supply the muscles in the leg, which results in an increased number of signals being sent between nerve cells.

This fits with my suggestions of potassium and magnesium cell levels being low in some patients. Very interesting to see another piece of the jigsaw fitting the theory.

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Oldcolner
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Oldcolner profile image
Oldcolner

I thought the above article was of importance, though it doesn’t yet suggest a new treatment. My iPad wouldn’t let me add much so this is a supplementary post.

If you remember from earlier posts the majority of us do not eat as much as we need of potassium or magnesium in our modern diets and potassium blood levels may be normal but body levels may be low as 95% of potassium is inside cells, 50% of magnesium likewise and 40% in bone.

Potassium stops nerve stimulation caused by sodium ions, magnesium stops muscle contractions caused by calcium. Magnesium is also needed for dopamine synthesis in the brain.

If nerve cell levels of potassium are low then nerves will be stimulated for longer. If muscle cells are low in magnesium then muscles will contract for longer.

The two are also linked as low magnesium levels in the blood cause potassium to be excreted.

68 patients with RLS in Bangladesh were cured after 45 days treatment with UrocitK normally used for cystitis after an incidental finding. This contains 1080mg pot citrate (10milli-equivalents of potassium.)

Another fact is that pregnant women may develop RLS in late pregnancy, this is the time when the baby is growing fastest and magnesium and potassium are needed for the cells in the baby, so mums stores will be reduced as a result.

A few posters on here have found benefit from one or other others haven’t but doses and products and duration usually aren’t cited.

Potassium can be dangerous if a lot gets into the blood stream rapidly and large amounts prescribed by a doctor need to be taken very slowly in lots or water. That way it will move into cells quickly or be excreted and not get to the heart in a large concentration. If you have kidney failure then levels may build up over time. Some tablets like Urocit are sustained release to release it slowly over time and these must not be chewed or broken.

For this reason The FDA limits over-the-counter potassium supplements (including multivitamin-mineral pills) to less than 100 milligrams (mg). That's just 2% of the 4,700 mg recommended dietary intake for potassium.

Supplements of both are available though as the potassium amounts are low, don’t expect an immediate impact and absorption of magnesium is variable depending which salt is taken (Oxide is low, Glycinate is high Citrate in the middle) and is lower in old age.

Cardiac and renal patients need to get professional advice for a doctor or pharmacist.

Madlegs1 profile image
Madlegs1 in reply to Oldcolner

Thank you so much for all that. Very interesting.

Oldcolner profile image
Oldcolner in reply to Madlegs1

You’re welcome

I see another post about Small Intestine Bacterial Overgrowth (SIBO) being associated with RLS.

This is possibly why.

Potassium is also the major intracellular cation in bacteria as well as in human cells, so if lots of new bacterial cells are over growing the potassium needed to do that will come from the host - thus depleting their intracellular body stores.

Madlegs1 profile image
Madlegs1 in reply to Oldcolner

I'm wondering how all this ties in with food triggers for rls?

( Stop laughing in the back ,you lot!😆)

Is it that they interfere with the uptake of other nutrients, or just are 'electrical' stimulants to the nervous system.

If I had my time again, I would love to have studied nutrition and environmental effects on the human body.

Thanks again.

Keep them coming!😝

Oldcolner profile image
Oldcolner in reply to Madlegs1

Hi Madlegs

I don’t know what the triggers are.

Guessing some

Alcohol acts as a diuretic making you lose more electrolytes.

Sugar - high glucose levels in the blood work together to cause fluid and potassium to move out of the cells into the blood circulation.

Salt (sodium chloride) is found in many foods and drinks.

i found that Sodium and potassium concentrations in red

blood cell water are Negatively correlated (so an increase in sodium in the cell causes a fall in potassium) and for a given change of sodium concentration in Rbcs the change in potassium was 1.4 to 3.8 times greater.

Madlegs1 profile image
Madlegs1 in reply to Oldcolner

Thanks. So fascinating. And complex.

You make good sense of it all.

🧐

Zbirth1 profile image
Zbirth1 in reply to Oldcolner

Hi. Thanks for the info. I’m seeing my oncologist tomorrow & will pick his brain about this. My ferritin has dropped to <60 So I’m already betting another iron transfusion is in my near future.

janland profile image
janland in reply to Oldcolner

Yes very interesting..

Not quite sure I understand the levels of magnesium though?

Which is the best one to take..?...and.

Which one is lower in old age?

Thank you

Jan

Oldcolner profile image
Oldcolner in reply to janland

Jan

Magnesium availability is highly complex and difficult to measure as it passes into bone and cells quickly.

I quoted an in vitro experiment which showed magnesium oxide gave lowest and glycinate highest amounts of magnesium passing though artificially grown gut cells in a ratio of 1 to 3.

This article reviews work in patients where Many other factors are at play and there isn’t much difference between them though glycinate was higher. You get more absorbed 80% if you take lower doses through the day but only 30% if you take a big dose as the active channel becomes saturated and most passes out in the faeces and a passive channel is more significant.

It also depends what you eat with it. Other ions such as calcium (milk or cheese) reduce gut absorption

The active channel works less well as you get older.

ncbi.nlm.nih.gov/pmc/articl...

Joolsg profile image
Joolsg

Very interesting and helpful. It does make sense ( I’m someone who developed RLS in pregnancy). If only someone could develop a safe way to take high doses ......

in reply to Joolsg

It's significant that females are more prone to RLS than men. Particularly pregnancy can lead to RLS. I'm not certain, but I imagine this is due to pregnancy depleting your stores of various nutrients. I guess however that a depletion of stored iron is more significant than electrolyte imbalance.

You will know that it isn't easy to correct depleted iron storage, but I imagine it's a different situation with minerals such as calcium and potassium

Oldcolner profile image
Oldcolner in reply to

Yes pregnancy depletes iron stores and probably lots of other things too. Much will depend on mother’s dietary intake as to what impact that has on them.

Oldcolner profile image
Oldcolner in reply to Joolsg

Joolsg

You could choose to eat high potassium foods. You need 4.7g a day

A baked potato and skin contains 1g potassium that’s 10 times mire than the FDA allow in supplements.

This chart offers plenty of choice

patienteducation.osumc.edu/...

In general rich sources of magnesium are greens, nuts, seeds, dry beans, whole grains and low-fat dairy products. The recommended dietary allowance for magnesium for adult men is 400-420mg per day. The dietary allowance for adult women is 310-320 mg per day. More on here

dietitians.ca/Downloads/Fac...

If you need to top up medically and don’t have cardiac or renal problems or getting old so kidney function is declining, you can take sustained release tablets or potassium citrate mixture very well diluted with water and drunk slowly.

I was a pharmacist but am retired now and In the 1960s we used to dish out the mixture for cystitis daily.

Joolsg profile image
Joolsg in reply to Oldcolner

Thanks Oldcolner, that’s really helpful.

in reply to Joolsg

This is another article I've found that might interest you.

ncbi.nlm.nih.gov/pubmed/232...

Oldcolner profile image
Oldcolner in reply to

Thanks

It’s a different hypothesis for pregnant women. I have no idea if it makes sense. It seems to refer to reduced dopamine as causing this. You may remember lack of dopamine is also caused by insufficient magnesium.

Thanks for posting this.

I have read this study before and found it very interesting. It is a breakthrough in that it was previously thought that the causes of primary idiopathic RLS are solely confined to the brain and central nervous system. It now appears that this isn't necessarily true and widens the range of potential treatments.

To put this into perspective, RLS is, as it says, a "syndrome" i.e. a set of symptoms which consistently occur together. It is not a disease condition, only the manifestation of an underlying condition. Like other syndromes e.g. jaundice, there is a number of underlying conditions which cause the syndrome.

It appears that traditionally, when an underlying condition has been clearly identified, it is labelled "secondary" RLS and where no underlying condition has been detected, it's labelled "idiopathic".

It"s great that research is now casting light on various factors which underlie idiopathic RLS.

RLS is primarily a phenomenon of the motor nervous system. Motor pathways originate in the pre central gyrus of the cortex, pass through various structures in the brain and down the spinal chord. They then leave the spinal chord and pass via peripheral nerves to innervate muscles at neuromuscular junctions. I believe that the consensus is that RLS arises due to an oversensitivity of these nerves.

The oversensitivity could happen anywhere along the pathways, i.e. in the brain, in the spinal chord and as this study shows in the peripheral system.

Studies have shown that RLS is associated with such things as brain iron deficicency, dysfunctional or reduced dopamine receptors, dysfunctional mitochondria along with causes of secondary RLS, peripheral neuropathy, vitamin deficiencies and so on.

Interesting that RLS is associated with end kidney failure and can occur as a result of dialysis which reinforces a connection between potassium and RLS.

The treatment of RLS should depend on the cause, e.g. where it's due to a problem with dopamine receptors, a dopamine agonist, where it's due to low iron, then iron replacement as examples.

I think it's worth noting that there's not going to be one treatment that*s going to be effective for everybody with RLS. This would be liking saying that everybody with jaundice should be treated for pancreatic cancer.

Not every case of RLS responds to increased iron levels for example.

It is brilliant that it's known that 50% of RLS can be relieved using iron.

It's great that is known that potassium is a factor in some cases of RLS. I hope there's further research on this and that studies identify how to differentiate between those who would probably benefit from potassium and those that wouldn't. It would be interesting to know what proportion of RLS sufferers would benefit.

Oldcolner profile image
Oldcolner in reply to

I can’t disagree this sounds multi-factorial and lots of other things play a part.

Re predicting who might benefit I suppose blood levels would be one, although that’s not a measure of cell levels.

A better way might be to get magnesium and potassium intracellular levels in red blood cells to get an indication. I think that is possible, though how well that reflects nerve and muscle cell levels probably needs more research.

Oldcolner profile image
Oldcolner in reply to Oldcolner

I am puzzled by the Rouf Bangladesh study which found all their 68 RLS patients were cured with high dose potassium citrate.....

Jphickory profile image
Jphickory

I have posted several times here ...that potassium citrate nearly always stops my RLS within 10 minutes after taking. Thanks for the great post.

Shumbah profile image
Shumbah in reply to Jphickory

Jphickory

How much potassium do you take ?

I tried to get my levels checked , the Natropath wrote out the order , pathology said they had no such test .

in reply to Shumbah

That's strange, serum electrolyte levels are part of a standard renal function test, sodium, calcium, potassium etc.

However that's blood level and it might not help.

Oldcolner profile image
Oldcolner in reply to

Manerva

Yes Blood levels can be normal, though total body levels in cells are low. It seems possible to get red blood cell levels and that would be a better proxy than plasma. No idea what it costs or how often they are done.

Oldcolner profile image
Oldcolner in reply to Jphickory

Jp

Great to hear that it works for you.

It would be great to know what you and any others who benefit take eg powder mixture tablets and what amount you take at a time and how much water you take with it.

Oldcolner profile image
Oldcolner in reply to Oldcolner

Jp

Your earlier posts referred to magnesium citrate as well - a teaspoonful in a glass of water.

LanaCSR profile image
LanaCSR

The first thing I thought of after reading that is using either massage or like a TENS unit type device to target the nerves like sciatic, S1-S2, or SI joint. So maybe there is something to that positional release manipulation. Does anybody know anything about how effective this is for RLS?

Muftah36 profile image
Muftah36 in reply to LanaCSR

I have tried the Tens machine for

RLS but it actually seemed to stimulate them more so that my legs were worse .

Needles to say , I didn’t need that so I never tried it again . Not to say that’s how it would work for others because RLS seems to be quite individualized in response to treatment modalities.

LanaCSR profile image
LanaCSR in reply to Muftah36

Yeah, it never worked for me either...*sigh*

RLSgirl profile image
RLSgirl

I've seen posts about potasium before, so I had teh NP here at work do some blood work and my potasium levels were fine. but If I understand what you are saying, just like iron, your levels may be in a normal range, but still not be all you need, or not be getting to the right places?

The NP strongly cautioned me against taking any potasium b/c it can mess with the heart and the body's electrical system. but now I'm thinking it maybe I should try to add more potasium to my diet.

Oldcolner profile image
Oldcolner in reply to RLSgirl

Hi

Yes your blood plasma levels can be normal even when your total body potassium is low. Did they measure your red blood cell potassium (ie no plasma just cells) as that would give a better indication of cellular levels?

Adjusting your diet is a good way to go and can give you a lot more potassium than a supplementary tablet.

You need around 4.7 grams potassium a day so I do find the paranoia over small 0.1 g supplements rather strange when a baked potato in its skin gives you 1g.

Yes Potassium is dangerous if a large amount gets to the heart such as by intravenous injection or you take a large amount orally in a small volume of water very quickly. Taken very dilute and slowly the potassium moves into cells from the blood and plasma levels reaching the heart will be acceptable, unless you already have heart problems or your kidneys can’t remove it as can happen in renal failure.

RLSgirl profile image
RLSgirl in reply to Oldcolner

I really have no idea what test she did. I'll have to ask her next time I get some bloodwork done. I've been trying to get it done every 4-6 mo. to track my iron levels as I try and raise them with oral iron. its not going very fast but I've managed to raise my iron ferritn form 29 to 60 in a year.

And yes, I did not realize what a minute amount of potassium are in these suppliments. it does seem a little unbalanced to be so fearful of them. And it also seems more logical just to try and add a potato or avacoado to your diet! lol thanks for the links about foods high in potasium.

You can find online quite a few sites that discuss how sugar will deplete various nutrients from your body. Carbonated drinks are particularly bad about that. Then by extrapolation, I'd say grain based carbs will probably do the same thing, and yeah, I see a bunch of you rolling your eyes!!! I still think diet is the first line of defense/offense for health issues, the basic starting point. Thanks for the post!

Oldcolner profile image
Oldcolner

Yes LV high glucose levels in the blood causes potassium to move out of cells into the blood.

I agree on diet, it should be first on the list to ensure everyone ingests recommended daily amounts of all ions particularly potassium, magnesium and iron.

And likewise need to avoid high salt containing foods and drinks as this pulls potassium out from cells and large amounts of alcohol which makes you lose electrolyte in the urine.

Could save a lot on supplements too.

GcrewDirector profile image
GcrewDirector

K & Mg have been my solution as well. Accidentally figured it out while trying to solve my migraine issues.

Oldcolner profile image
Oldcolner in reply to GcrewDirector

GC

Great news.

Can you say what you do or take, how much, how often, what form etc

GcrewDirector profile image
GcrewDirector in reply to Oldcolner

Magnesium Glycinate 400 - 800 mg/day.

- 400 mg AM & 400 mg PM (KAL is the brand I use). 2 tablets = 400mg.

Potassium Gluconate - 400 mg/day.

- 200 mg AM & 200 mg PM. 1 tablet = 99mg

Occassionally, if I notice more leg twitching, I'll add an extra dose in during the day. I've also tried different kinds of Mg and K, but these are what work best for me.

One study indicates Potassium Citrate was the form used to resolve RLS... it made mine worse!

healthunlocked.com/rlsuk/po...

Oldcolner profile image
Oldcolner in reply to GcrewDirector

Thanks GC that’s very helpful, albeit citrate made yours worse.

Oldcolner profile image
Oldcolner in reply to Oldcolner

Your magnesium intake seems quite large as you only need 400mg or 320mg for a woman or so a day.

I guess some of it will just pass though the bowel.

marsha2306 profile image
marsha2306 in reply to GcrewDirector

My doctor just told me a few days ago that I should not take more than 350 mg. per day.

I take 3a magnesia every night (360 mg per day) to avoid constipation.

Oldcolner profile image
Oldcolner in reply to marsha2306

Marsha

Low doses of magnesium are absorbed by an active route that gets saturated quickly, larger doses are not well absorbed and the magnesium passes through the bowel creating a laxative effect so it’s sensible to keep to the figure your doctor quoted for supplements. If you desperately need a laxative then you could take more.

Much higher doses are needed to be toxic, but you’d be on the toilet much of the day.

“Very large doses of magnesium-containing laxatives and antacids (typically providing more than 5,000 mg/day magnesium) have been associated with magnesium toxicity “

ods.od.nih.gov/factsheets/M...

marsha2306 profile image
marsha2306 in reply to Oldcolner

I was trying to actually question Gcrew Director. I think he was recommending above that level of magnesium. I wasn’t worried about any issues I might have. I was just concerned about the amount he was talking about.

GcrewDirector profile image
GcrewDirector in reply to marsha2306

I just had my Mg level checked by my physician 2 weeks ago. It is in the normal range even with the amount that I take. Potassium was checked as well. It is also normal.

Oldcolner profile image
Oldcolner in reply to GcrewDirector

Hi Gc

The real issue isn't your blood plasma levels but what are the levels inside your cells particularly nerve and muscle cells. Of course we can’t find that out easily and the nearest to getting a cell level would be to get red blood cells spun out of the blood and then measured. Not sure how easily that can be done.

However I’ve also read rbc levels don’t necessarily reflect cell levels elsewhere!!

It is quite possible for plasma levels to be normal (as there is so little of total body amounts there,) but for cell levels to be low as 95% of potassium is inside the cells and 40% of magnesium whilst another 50% of magnesium is in the bone.

Looks like a catch 22 issue. At least you’re ‘plasma’ normal.

If you take more than you need the body will just let it pass out maybe giving you loose bowels, that dose won’t harm you otherwise.

Oldcolner profile image
Oldcolner in reply to marsha2306

Thanks

Hope answer below to GC helps

fchrist profile image
fchrist

Has anyone tried Cell Salts to help with the absorption of the minerals? Mag Phos and Kali phos might be a good addition when taking the supplements or food. I find this fascinating.

Oldcolner profile image
Oldcolner

Fc

Are these homeopathic preparations? The idea there is the weaker the solution is the stronger is the effect and it’s strongest when there is nothing left just holes in the water where the ingredient was. It’s generally debunked these days. Sorry you need real Mg and K ions, not imaginary ones

marsha2306 profile image
marsha2306

What happened to the iron not crossing the brain barrier theory? Is this supposed to be contradicting that? So confused!

Oldcolner profile image
Oldcolner

Sorry Marsha I’m lost. Where did this confusion arise?

marsha2306 profile image
marsha2306 in reply to Oldcolner

The original post about nerve cells, muscles etc.

I’ve always thought the mainstream theory is about iron not crossing the brain barrier.

Oldcolner profile image
Oldcolner in reply to marsha2306

Hi Marsha

I’m not a brainy person, hence my focus on nerves and muscles. There’s a lot written on iron in the brain so I presume it gets across somehow.

Sorry can’t help more.

marsha2306 profile image
marsha2306 in reply to Oldcolner

I’m going by what my doctor says. He is one of the prominent RLS specialists in the US. Check out

Dr. Christopher Earley at Johns Hopkins.

Oldcolner profile image
Oldcolner in reply to marsha2306

It must be able to cross it to get into the brain, Found this which may help sort the confusion, though I don’t understand it!

ncbi.nlm.nih.gov/pmc/articl...

Unlike peripheral endothelia, endothelial cells within the brain vasculature are bound together by tight junctions, resulting in a physical barrier to material exchange between blood and brain tissues and fluid. Therefore, the brain cannot take up iron directly from the circulatory system.

The major uptake pathway is mediated by the blood-brain barrier (BBB), which is formed by cerebrovascular endothelial cells (or brain vascular endothelial cells, BVECs) (see Fig. 2). Unlike small gas molecules such as O2 and CO2 that can diffuse freely across lipid membranes into the brain, iron crosses BVECs in a multi-step transcellular process similar to that of enterocytes in the duodenum.

marsha2306 profile image
marsha2306 in reply to Oldcolner

But not as much as necessary. That’s why RLS sufferers must make sure their ferritin level is above 100.

CORFUORBUST profile image
CORFUORBUST

As long as they don't start going down the road of "mental" reasons why someone has RLS or PLMD as we will never get any help. This sounds like they will put it under FND!!

janland profile image
janland

Thank you for your article re potassium and magnesium..

I take the latter every day..now I'm thinking I'll try potassium (again).. but it musnt be too high a dose I believe..

Rls is really wearing me out..

I feel worn out every day..

I'm on levothyroxine for thyroid..(hypothyroidism)..

But this might be connected too if levels not right.

Would an endocrinologist know the answers about rls do you think..?

Best wishes

Jan

Oldcolner profile image
Oldcolner in reply to janland

Hi Jan

Good luck. I think you can do better by eating a high potassium diet, the FDA don’t allow you to buy more than tablets with 2% of your daily allowance (99mg of 4700mg) but you can eat a baked potato and skin and get 1000mg (600mg without skin), a cup of milk has 400mg

Here’s another list to one posted earlier that can help you boost your intake.

drugs.com/cg/potassium-cont...

I’m no expert on thyroid issues and it seems hypo and hyper thyroid can both cause RLS, an expert may be able to help explain that.

janland profile image
janland in reply to Oldcolner

Thank you so much for your information on potassium..a great help.

Best wishes

Jan

cw7711 profile image
cw7711

Thanks! Wonderful info. In going to try those baked potatoes.

BTW, in case anyone else might like to try this, I take .25mg pills of Primapexole and cut them in half and take one of these halves for a total of three (.375mg) at one hour intervals starting at 7pm. This works well to avoid the augmentation I get from taking higher doses and also eliminates the onset of RLS at bedtime, and boy am I sleepy by 10pm.

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in RLS are caused by increased excitability of the nerve cells that supply the muscles in the leg,...