Restless legs syndrome

Hutan

Hutan

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I have just realised I have restless legs syndrome. I had had the vague idea that RLS involved legs spasming and so thought it was different to what I have. Normally, with just me to see my moving legs, I didn't think about it much.

But I was driving my daughter crazy with my feet and ankles constantly moving while on the sofa watching tv, so I googled it. My understanding of it now is that the moving of the lower legs is a sub-conscious and conscious reaction to the uncomfortable feeling. For me, it's a sort of swollen ache that feels better when my ankles and toes are flexing and when there's the tactile distraction of rubbing the foot against a sheet or against the other foot.

I'm thinking now that this is a milder version of the bone crushing feeling I get in my lower legs and hands when in PEM. I have read that one cause is small fibre neuropathy, which perhaps makes sense.
 
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My sister had RLS back in 2012 when she came to visit and we tried to get to the bottom of what was causing it. She had low ferritin and was later diagnosed with Hashimoto's. She is being treated for HD, and when her iron levels were brought up to normal range her RLS went away.
 
I get RLS sometimes. It's usually when I'm trying to get to sleep at night. Instead of lying in bed relaxed, my legs keep needing to move about. If I focus very hard I can stop them for a short time, but the need to move overwhelms and I'm thrashing around again. It's not involuntary movement or jerking, but it's not controllable either. (and I'm decades past menopause).

I remember my mother getting it in the evenings. She'd be sitting watching TV or reading and she would get restless and end up getting up and walking around to try to cope with it.

I haven't been able to pin it down to any trigger, though I think it may happen more when I'm over tired and my temperature control feels messed up.

I noticed it flaring up recently when I started using a gaviscon equivalent liquid last thing before bed to try to reduce acid reflux and I wondered if it was related to salts imbalance (it contains sodium bicarb and calcium carb.). When I get some, I'm going to try taking magnesium at the same time to see if it helps.

I don't think I'm anaemic, though I haven't been tested for years.
 
I have it occasionally, though it's all over my body (including, bizarrely, the area under my chin). It's the worst pain I ever get. I've identified two triggers: eating raisins in the evening, and low blood sugar.

The latter is by far the worst. It tends to happen a few hours after a meal, when the insulin response drops my blood sugar too low. It took a long time to work out why I'd be craving food after eating a good tea, but I eventually realised that it really helped if I did.

I no longer bother getting up and making toast; a teaspoon of marmalade will do the job within five minutes. It was a massive relief when I realised this, as no meds will even touch the pain!
 
The most common cause of restless legs is low iron and/or ferritin. You don't have to be anaemic or suffering iron deficiency to get restless legs.

Efficacy of oral iron in patients with restless legs syndrome and a low-normal ferritin: A randomized, double-blind, placebo-controlled study

CSF iron, ferritin and transferrin levels in restless legs syndrome

Several years ago the wikipedia article on restless legs used to say something along the lines of (paraphrasing like mad) "Getting ferritin level up to a minimum of 50 mcg/L helps restless legs in most people. If it doesn't help getting levels up to 80mcg/L will help even more." (The higher level was roughly middle of the standard reference range for women of roughly 15 - 150.)

But now it says...
There is some evidence that intravenous iron supplementation moderately improves restlessness for people with RLS.[60]
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which I find shocking in its uselessness. But then it costs peanuts to test and improve iron and ferritin, so there would be no profit in it.

Edit : I forgot to say that improving magnesium levels helps a lot too.
 
Braganca said:
It’s also connected to low dopamine at night. The Parkinson’s patch med Neupro — a dopamine agonist —is approved as a treatment. May be interesting to see if it also helps your ME, since some people are finding dopamine agonist / antagonist Abilify helpful.
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People should be very wary of dopamine antagonists, and if they start taking one they should start with a tiny dose and build up very, very slowly. I took a dopamine antagonist a few years ago which was supposed to help a gut problem. I felt odd after just the first one. I was still driving at the time and I was normally a careful driver. I was driving really recklessly after just one pill, but didn't realise. My husband was a passenger and he was terrified. Over three days I took just five pills and I developed a condition called akathisia. Comparing restless legs to akathisia is like comparing a snowball to an avalanche. It was absolutely terrifying. It was one of the worst experiences of my life. Luckily I got an antidote from my GP, but it took weeks for me to feel "normal for me" again.
 
Arnie Pye said:
The most common cause of restless legs is low iron and/or ferritin. You don't have to be anaemic or suffering iron deficiency to get restless legs.
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I don't think that there is a known cause for RLS, but one theory is that it is an imbalance of the brain chemical dopamine. Also, it is more common during pregnancy and menopause with it probably being hormonal changes that trigger it.
 
One of my first memories, if not the first reasonably solid memory, is from when I was about 3, of RLS.

I am also male.

It is therefore unlikely I was entering the menopause.

Last time they were checked my ferritin levels were really quite high, over 1000, so, as I was still having the wonderful experience of RLS, its unlikely the cause was low ferritin, or iron.
 
Wonko said:
One of my first memories, if not the first reasonably solid memory, is from when I was about 3, of RLS.

I am also male.

It is therefore unlikely I was entering the menopause.

Last time they were checked my ferritin levels were really quite high, over 1000, so, as I was still having the wonderful experience of RLS, its unlikely the cause was low ferritin, or iron.
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There are other possibilities - magnesium, for example. If you search for "best and worst forms of magnesium supplement" you might find some interesting info on the subject.

I'm an inveterate experimenter when it comes to supplementing. :)
 
Kitty said:
I'd always try non-drug interventions first, such as trying upping blood sugar, taking magnesium, or – as long as you have your levels checked first – looking at iron.
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I agree. For me it's not so bad or so frequent I would ever try a drug for it. I tend to react badly to a lot of drugs, and compared with my ME symptoms, my experience of RLS is relatively minor. I can understand if it were to get to really dominating my life I would think differently.
 
Arnie Pye said:
But then it costs peanuts to test and improve iron and ferritin
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Just wanted to highlight the word 'test' in the sentence above to anybody considering iron supplementation to treat restless leg syndrome: do get a test first. Iron is one thing you really don't want to get too much of.

n=1 I have restless legs and haemochromatosis (iron overload). I've never noticed iron levels making any difference to my restless legs. I've had very high iron from the haemochromatosis as well as very low iron after aggressive treatment. Legs behave just the same.
 
Ravn said:
n=1 I have restless legs and haemochromatosis (iron overload). I've never noticed iron levels making any difference to my restless legs. I've had very high iron from the haemochromatosis as well as very low iron after aggressive treatment. Legs behave just the same.
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Have you ever tried magnesium supplementation? It's actually one of those nutrients that can't really be tested very well. Very small amounts of the body's magnesium is found in the blood stream. Most of it is in other tissues. When the amount of magnesium in the blood drops a bit low the body steals it from those other tissues. So most people who get magnesium tested have what looks like a totally normal amount but could be deficient in other parts of the body.

As long as the kidneys function reasonably well the body will get rid of excess magnesium in the urine. Anyone with dodgy kidneys should avoid magnesium. There are lots of different types of magnesium supplement available and it is personal choice which one people take. Some of the ones that get sold are totally useless because the body can't absorb it e.g. magnesium oxide.

Magnesium basics : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4455825/

Discussion of magnesium supplements : https://drjockers.com/best-magnesium-supplement/

I never knew restless legs was associated with high levels of iron until you and Wonko mentioned it. I've learned something new. I've had low iron all my life, and it has been frankly deficient quite often.

I used to have cramp and restless legs a lot - several times a week - but I almost never get it any more, and I credit my supplementing to improve lots of nutrients. I'm a cheerleader for nutrient supplementation, but only when people know that they are deficient in something, but it also depends on what the effects of over-dosing it are, and how the body deals with toxic amounts. If the body can't get rid of excess amounts and I can't afford the testing I either don't supplement at all, or I supplement an amount considerably below the recommended amount on the bottle.

But I have found that people jump to so many conclusions whenever I say I supplement a lot. I'm frequently assumed to be an idiot who thinks that mega doses of everything will make me Superwoman, and I'm also assumed to be gullible enough to be fooled by marketing into spending money on powdered cockroach or something equally stupid.
 
Arnie Pye said:
But I have found that people jump to so many conclusions whenever I say I supplement a lot. I'm frequently assumed to be an idiot who thinks that mega doses of everything will make me Superwoman, and I'm also assumed to be gullible enough to be fooled by marketing into spending money on powdered cockroach or something equally stupid.
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Well I for one consider you to be a very astute smart lady.
 
Arnie Pye said:
Have you ever tried magnesium supplementation?
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Yeah, I take mega-much magnesium for another issue (under supervision of my doctor). Started about 3 or 4 years ago so memory a bit vague but I do recall being rather disappointed at the time because I'd hoped the magnesium would, as a beneficial side effect, help my restless legs and general muscle tension, too, but it had no effect on that at all. Different types of magnesium don't make a difference either. Maybe I should try powdered cockroach. Isn't chitin supposed to have some health benefits or other? :yuck:;)

The intensity of my restless legs seems to vary on two levels.
One, there's a sort of background level which some of the time is barely noticeable but for no discernible reason every now and then goes up to mildly annoying for a few months.
Two, whatever the background level, it gets worse when I've overdone things.
In the scheme of things, it would be nice if it went away but it's not really one of my major concerns.
 
@Ravn

The only other things I know of that might cause restless legs are low sodium and low potassium. I've rarely had either of these tested and I wouldn't supplement them as a regular thing. But if I do get restless legs, cramp, muscle twitching etc I will try a very small amount of salt and a very small amount of potassium bicarbonate in a glass of water. By "a small amount" I mean quarter of a level teaspoon.

You might find this interesting :

https://drmalcolmkendrick.org/2013/03/04/potassium-your-invisible-friend/

You'll be pleased to know that I've run out of suggestions for cramp, restless legs now. :)
 
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