Hello everyone, wanted to share my experience/thoughts.
I'm a 58-yo female from the UK. I've suffered from RLS for around 20 years. I've never tried any prescription meds for this (the medications all sound quite dodgy to me as they seem to lead to dependence, and don't treat the root cause, which seems unknown).
However I've found magnesium (citrate) gives total relief - if I take enough. (Makes sense as magnesium helps muscles relax, in opposition to calcium, which helps them contract). But my condition *is* getting worse. I've gone from needing 200mg magnesium each evening to 400mg in recent months, sometimes even 500mg.
(I've also suffered from low-grade insomnia for many years, unrelated to RLS. Deep sleep is impossible, and I never sleep for long).
Over the years I've noticed patterns - RLS gets worse if I have a lot of dairy. Vitamin D worsens insomnia. But changing my magnesium dose timings so I take the last 200mg just before bed has (blissfully) allowed me to sleep well. And I've recently noticed they whenever I take holidays in soft water areas my RLS improves, whereas when I return home where the water is rock-hard, things get worse again.
So this leads me to wonder if my condition is fundamentally a calcium-magnesium balance issue - for whatever reason (genetic? kidney issues?). That for me, living an a hard-water area means I'm taking in more calcium than my body can cope with. Maybe for many others too... If you're one of those who finds magnesium helps, could this be the key? Just wondering how many of you live in hard water areas or eat a lot of dairy?
I've started an experiment, as of yesterday. I've bought a water filter jug and a filter that targets limescale, for all my drinks and cooking. I'll keep my dairy intake low as well (I don't take milk in hot drinks anyway which helps). I'll see what happens and report back.
29/07/2024: Posted update (assume it will appear at the bottom of thread?)
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sydaway
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Interesting on phosphates in that first article. Maybe that's a factor too? I had a mineral test a few years ago (for another issue) - calcium normal, magnesium low. Not sure about phosphates.
I'm not sure what a "Tum" is - does that mean something to Americans?
My comments on sleep were about the relationship of magnesium to cortisol. I was wondering if elevated cortisol was keeping me awake each night. This article is interesting:
It describes a vicious circle of magnesium loss leading to cortisol increase leading to more magnesium loss, rise and repeat. Until the cycle can be broken with magnesium supplements. Except for me, seems the magnesium loss never stops, and I don't know why. I'm not especially stressed at the moment. Hence this experiment.
I suspect Tums are heartburn meds to help an upset "tummy".I take magnesium every night routinely. They have never made any difference to my RLS, but they help my opioid induced constipation.
Interesting. Just to give you some other things to think about.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
It's certainly complex! I notice caffeine is in both lists. Another diet-related thing I've noticed in myself is foods high in phytic acid are triggering. That's an anti-nutrient found in wholegrains, seeds, nuts and pulses - prevents absorption of various minerals. I've found vitamins D and K2 make no difference at all to my RLS. I wonder of there are several "types" of RLS, with different causes.
What were the medications that you said Magnesium citrate can interfere with? There were some medications that you said you had to take 3 hours prior to taking the medication. Thanks.
I found magnesium citrate miraculous when I first took it - let's say 10-15 years ago, I didn't make a note - and I probably took 2 x 200mg/day.
I still had breakthroughs, so moved to 3 x 200mg/day - spread out through the day, early, mid and evening, as I noticed the laxative effects if I took more than 200mg at a time. I still had occasional breakthroughs which I didn't understand at the time.
In 2021 I had a mini-stroke and was put on atorvastatin. My RLS went through the roof, magnesium didn't seem to help at all. After 6 months or so I managed to get the consultant to listen to me and get taken off the statin: immediate improvement!
But still some breakthroughs: I then took investigating my triggers seriously (see Bio) and was able to reduce my citrate intake, firstly to 400mg/day and now to a maintenance 200mg taken in the evening.
Your observations about hard/soft water are interesting!
Your experience with the citrate is very similar to mine - of great relief, experimenting with different dosage patterns, and of breakthrough symptoms. I wonder if we have a distinct "type" of RLS?
And that's interesting about the statins. It's confirmed what I've always thought, that they're generally bad. I wouldn't touch them with a bargepole - ever since I read the account of ex-astronaut Duane Graveline and how his health was destroyed by them. Well done for getting off them.
I read you bio - noted about the sugar and caffeine. I rarely have sugar - a bit of fruit at the most - and no sweeteners. I like a morning coffee but after 12, that's it (in case it affects my sleep).
So here's a question: what's your local water like, hard or soft?
I had RLS for 40+ years. We've had a water softener for 10 years. I can't link my RLS symptoms to water , but I can link worsening RLS - despite taking magnesium and having good ferritin levels - to other factors:
1. I retired 6 years ago, got slothful, exercised less and resorted to eating too much sugary 'comfort' food while relying on 'diet' foods and drinks to take up the slack: experimentation showed that both both sugar and aspartame (and almost certainly sucralose, acesulfame and saccharin) are definitely RLS triggers for me, particularly if consumed in the evenings.
2. I was on atorvastatin for six months in 2021: it made RLS unbearable, but also had other terrible side effects. Rosuvastatin was not as bad, but still bad enough.
3. I seemed to get more vulnerable to colds in recent years and started taking more sedating antihistamines at night - i.e. Night Nurse etc - before realising that this was another common trigger. I absentmindedly took some of my wife's NN last week when I was stuffed up and had a very bad night.
Just a comment about sugar craving --- those who do, try taking a supp of chromium picolinate; for me and many others, the sugar craving goes away, apparently due to a chromium deficiency. In the USA that is OTC.
I was put on the max dose of magnesium citrate & found it gave me huge relief for 6 months.Unfortunately for me that did not work long-term, so am now on buprenorphine.
I have had RLS for 40 years & have tried everything under the sun.But as soon as my body gets used to my latest trial, such as magnesium citrate, my RLS breaks through.
But this is just me. You may continue to have huge success with it & I do hope so.
It did give me 6 months blessed relief.
When magnesium stopped working my "alternative" doctor thought he would crack my RLS by giving me acupuncture but that made my legs go crazy so he gave up.
I have a reverse osmosis system and the water I drink is almost mineral-free and has been for years. I take about 600mg of Mg a day. The RLS still depends on whether I ingest lectins, though. But I have FQAD which may put me in a different category than you, because I've been poisoned by fluoride and the entire mineral spectrum is out of whack in me.
I think our food supply is getting more and more mineral-deficient (not sure about the UK, but am pretty sure about the US) and that could account for your needing more Mg than you did. I think it's very interesting that a change in your mineral input affects the RLS.
It's not after effects. It is damage. Even if you're not aware of it, fluoride displaces minerals and FQs damage mitochondria. It's known and they changed the black box warning but doctors still prescribe them as if they were safe.
UPDATE: It's now nearly two weeks since I got the water filter, so I thought I'd post back on how I've been getting on.
So I think I do feel a lot more comfortable. I've not had any more uncomfortable bouts of squirming/writhing on the sofa due to frustrating breakthrough RLS symptoms, which had been increasingly common.
The only time I've had RLS symptoms is when I tried missing a magnesium dose "to see what would happen". The result was the familiar RLS "twitching" beginning to kick in by bedtime. So I'm back on my usual magnesium dose of 200mg early evening (to prevent RLS symptoms) and another 200mg before bed (to knock me off to sleep). I think I'll carry on with this indefinitely - it can't be doing any harm.
So my interim conclusion is that doing this has not been a "cure", but it's certainly removed one big aggravating factor.
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