I've been thinking over the past few months about RLS and whether the syndrome includes both voluntary and involuntary (muscle tremors as in Parkinson's for instance) movements.
To take an example. The typical type of restless legs I experience is a nerve-type pain - a bit like tooth ache - that starts in the buttocks and builds up to a point where it radiates down my legs. It's a pretty regular thing, with pulses emerging every 7 seconds or so. I wriggle and jiggle my legs to dissipate the discomfort.
Now I can tell my legs not to move, but it's awfully unpleasant and I can't sustain it for very long anyway. I have to jiggle them when the impulse starts. But the movements are voluntary as far as I can see.
But I've read here and elsewhere that people's legs can move hundreds of times while they're asleep. And this to me sounds like involuntary movements.
I'm just wondering if anybody's done any work on identifying the different forms the syndrome can take - including voluntary and involuntary movements.
regards,
Chris Saunders (from wintery Norway)
Written by
Pluto46
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Hi Pluto from, wintery Norway, hope you are staying warm.
RLS is voluntary movements, you have to move because of the urge to move which we cant resist. PLMD Periodic Limb Movement Disorder happens at night while asleep and they are involuntary movements, movements that happen while asleep so you dont know you are moving. PLMD you dont have any sensations like you do with RLS. Both different condition, some suffer both, some suffer one or the other. Hope that helps
However - what you describe sounds far more like a nerve issue related to all those nerves radiating down through the buttocks and legs originating in L2/3 discs.
Have you had any back issues or slips or falls- not uncommon in icy Norway!!😨
On the wider issue of voluntary as opposed to involuntary - when does one become the other?
When I have fizzy legs , I NEED to move or rub them for relief. But if I did not do that , I probably would die or explode!
I read of an experiment where they did not allow an RLS sufferer to move their legs ( don't ask me how they managed this😈) but if it had been me- the experiment would have been extremely shortlived - with one mildly dead technician as an outcome.😠
I had a long discussion with my neurologist about whether the movements are voluntary or involuntary. I explained that I could often stop my legs moving but, as you describe, I have a build up of really unpleasant sensation so have to move. It is arguable that even though the movement is a deliberate one it is driven by an involuntary urge.
Hi ive had rls all my life and do not have any pain ever. It comes from your brain so i would not say that as sone people say sitting certain ways stops it it doesnt .
Thanks to Elisse, Madlegs1, martino and Jeanniebeannie for responses and replies
I began writing a reply earlier today, but had to go out and managed to delete everything when I turned the computer off. I'll try and remember what I wrote.
The first thing to mention is that I’m not sure which words to use to describe the sensations I’ve experienced. This has been a constant problem from the start.
I’ve just turned 70, but the sensations causing me to move my lower extremities occurred first in my late teens and early twenties.
I’ve visited a few doctors down the years, but never succeeded in describing the RLS sensations satisfactorily, I’ve always felt.
I realized early on that there’s a definite psychological aspect to the way RLS (if it is RLS) expresses itself in me. I don’t know whether this is common or it means I may not have RLS after all. I’ve never spoken about the psychological aspects before. Possibly due to embarrassment.
What I’ve found stimulates the need to move, which as I mentioned often starts in the buttocks and radiates down my legs, is being in a situation where I feel I ought to keep still. For instance, sharing a bed with my wife in my short-lived marriage in the late Sixties/early Seventies could be excruciating because I felt I ought to keep still, but was plagued by these sensations that erupted and forced me in the end to shift my position. Immediately afterwards, the sensation would start building up again. It also had the form of a crescendo. I was intensely jealous of people who could just 'relax'.
Other situations include sitting next to people on a crowded train or air plane. But the sensations also occur when I want to sit and listen to music or read a book. Indeed, so Pavlovian has the process of sitting down in my recliner to read a book been that the ‘pain’ starts before I’ve even started reading.
It’s not restricted to my lower extremities either. I can be working away at the computer, often at night, and all of a sudden I can feel the pain/sensation building up in my shoulders and arms, and I have to writhe around just to get the job finished before the sensations become completely intolerable.
I’ve likened these sensations to toothache because they seem somewhat similar in tone. Quite unlike the pain of falling down or pricking one’s finger with a needle for example. But they may not be 'pain' in the narrow sense of the word. I just haven't got a different or better word.
As Madlegs1 suggests, it might be caused or exacerbated by something amiss in the spinal department. Be interesting to hear what others think.
Pluto 46..I can totally relate to your story. I too have had RLS since early childhood. Was often chastised for being fidgety. Through the years it has been a cross I've had to bear and has really made life unbearable at times. When I worked, I traveled for business and dreaded hours on a plane. Going to the theatre is a near impossibility. I, too, am jealous of those who can relax and sit still, read a book, watch a movie. And, as with you, it is a malady which involves my arms and shoulders as well. In addition, I do have spinal problems...stenosis, degenerative disk disease...so I am sure that adds to the misery. Hopefully, one day there will be a successful long-term remedy, since I am 74 perhaps too late for me. Fingers crossed!!!
What you're describing sounds very much like RLS to me. Being in a confined space, like being on a train/plane can bring it on, and it typically occurs in the evening when you're sitting or lying down, although it can happen at any time of day, particularly if you're feeling confined. I've suffered from RLS my whole life (54 years) and I agree with you 100% that there's a psychological aspect to it.
RLS can also occur in the arms, so you might well be experiencing it there as you describe. Fortunately I don't, but many here do.
RLS is about moving voluntarily due to sensations which make not moving excruciatingly unbearable, absolute torture to try to stay still. Involuntary movements, ie movements you cannot stop or control, are not part of RLS but are another condition, as has already been mentioned above, although you can have both.
I must admit when I starting reading your first post I thought it sounded like sciatica, ie nerve pain, as Madlegs has said. It might well be worth you asking for an MRI scan to rule out spinal problems. I've suffered with sciatica and had major surgery on my spine a year and a half ago for stenosis of the spine and a prolapsed disc. Both sciatica and RLS relate to nerves (RLS being a neurological disorder) and I can understand you wanting to move if the pain got too great. Perhaps you're suffering from this and RLS too, lucky you!
Everyone moves in their sleep, but of course people with RLS will move a heck of a lot more. My grandma used to say I was a "restless sleeper". This is not necessarily PLMD, just another symptom of RLS, and if you felt as though you couldn't move in bed then it will make it worse. When I'm in bed often my small dog likes to climb up and lie in-between my legs. I can be fine lying there, with no RLS symptoms, but as soon as she lies between my legs, so I feel restricted, I will start to get some symptoms and have to move her. Thankfully as I'm taking Tramadol I don't suffer a full blown attack of RLS anymore, but do occasionally get mild symptoms.
It's very difficult to describe the sensations that RLS gives you. To me it's like having itching under the skin, like itchy muscles, in both upper legs. Sometimes it's more of a creepy crawly sensation. Very occasionally my legs ache, but that's rare.
I liken mine to an electric tickle (unpleasant tho!) or electric pulse running thru my thigh. For me usually, but not always on the left side. I have had it in my arms at times, as well. I also get periodic limb movements often.
However, 2 things. There are some very good posts/info/links by Oolong and by Whitebuffalo on iron and how people with RLS have a genetic problem with processing iron in the brain. I suggest you look for them. Info is from well respected institutions. How the spine plays into this is if there are kinks or mis-alignments of the spine it interrupts the flow of dopamine down the spine to the limbs, and causes the symptoms of RLS. Read more specific info with the above posts.
So, several of us on here (tho not all, depending upon their own causes of RLS, such as spinal injuries, illnesses or surgery - more pronounced than 'simple' RLS) have found that 25 mg of Iron Bisglycinate, taken before bed (not in the morning or it is useless,) to be very helpful. This form of iron is easily absorbed and non-constipating, both features of which are important. I use one called Gentle Iron, by Solgar. Perhaps you have it Norway. It is available in the USA at most healthfood stores and on Amazon. Not at all expensive.
Then, the spine. I myself (and I am 65) have had RLS since a child, sometimes bad sometimes not so bad. I also have had several falls over my lifetime (who hasn't?) the worst of which was to my sacroiliac or tailbone joint, which goes 'out' at times. Tho the iron does a great job of keeping my RLS under control, I have noticed if my SI joint is out of place, causing a pinching pain, when I lay down to sleep the RLS is more pronounced and bothersome. For this, I see a chiropractor once a month or as needed and he puts everything back in place. Then the RLS goes back to being minimal. I also do stretching exercises to keep the spine flexible. Other people also do yoga. This helps to keep the spine from being out of alignment and interrupting that needed flow. Thus the spine is not the cause of RLS - that starts in the brain - but the spine is a partner in how it all plays out, either good or bad. (It need not be the SI joint, but other parts of the spine as well.)
In my opinion and my experience, the iron is a good place to start. You may find it is just the thing. But I would also look into your spine, as another helpful route. Other people on here find different drugs to be helpful. I myself do not want to go that route. My RLS, while in the past being so bad and so disruptive to my sleep (and husband's sleep!), is now, since I started taking the iron, very minimal. Even tho I do feel a fluttering nerve impulse here and there, I am willing to put up with that and thus do not take any drugs for RLS. That does not work for other people.
Hope this info, and the above mentioned info, is helpful to you. (As an aside, I love snow! But I gave up skiing some years ago as I did not want to fall anymore, and took up snow shoeing. I love it! And the fall risk is very minimal.)
Hi Laura, glad to hear you are doing so well. Me too :). I, for one, wait to see if the RLS is bothering me before I take it. I'm willing to lose the hour of sleep that it takes for the iron to kick in. Supposedly the less often we take iron, even say every other day, the more of the iron will be absorbed and the better the relief. Keep up the good work!
Thanks, Oolong, for your input on this. I have, on occasion, forgotten to take the iron, and still my RLS did not act up. So, I think I will try that more often, perhaps a few times a week. I have heard that in relation to other vitamins/minerals, as well. It makes the body more efficient at using things.
My RLS is no longer the creepy crawly voluntary movements. It is now involuntary and occasionally my whole body moved. I have to stay ahead of it and have learned how it feels when it's coming on and what triggers it.
I am also puzzled by the voluntary/involuntary issue. I experience both - sometimes I feel the urge to move so I move my leg; other times I feel the urge to move but my leg jumps before I can move it voluntarily. The jump is more of a spasm, lasting a couple of seconds and quite different from the voluntary movement. Both voluntary and involuntary movements follow the urge to move so I don't believe I am suffering from two different conditions.
The most simple way to differentiate is if there is an urge to move sensation no matter how slight then an involuntary movement then it is RLS. If there is a complete absence of urge to move sensations then an involuntary movementthen it is Periodic Limb Movement Disorder x
Just like to say thanks to all for replying. I've been busy the past few days, and probably will be for the next few days, but I'd like to pick up on a few of the things people have mentioned later when I get the time.
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