I am 69 and I have had RLS with increasing severity for 50 years. I appreciate that everyone’s experience is different, but I would like to offer a few observations to add to the pool of anecdote which might help lead to a deeper understanding of the condition.
First of all, my variant of RLS involves hardly anything of the “creepy crawly feelings“ and “pins and needles” which so many other people report. I started getting a very little of these only after about 40 years in. By contrast, what I experience is spontaneous and uncontrollable violent limb movements, as soon as my brain starts to relax, whether it is dozing on the couch or in bed at night. I do get a little warning, in that there is a moment of “electrical” feeling in the limbs before the movements start, but there is no choice in the matter. Many medical descriptions of RLS describe it as “a feeling of an irresistible urge to move the legs”, but in my case there is no decision-making involved. Without medication, the only way I can stop the violent jerks is to stand up and move around.
So my Point One is that there appear to me to be different major variants of the condition.
Secondly, I have always experienced that RLS has something to do with the muscle reflex system (in which the limbs recoil from a potential threat stimulus prior to the sensation reaching conscious awareness). It appears to me that in my case anyway, one aspect of the cause of RLS is the nervous system over-reacting to sensory stimuli in the limbs. For example, if my leg touches a cold object, like a cold beverage bottle from the fridge or something, I will get an immediate and violent muscle jerk. Another interesting and similar phenomenon is that when I have muscular sensations of light pain due to an unaccustomed degree of exercise and therefore accumulation of lactic acid in the muscles, my RLS is much worse.
So my Point Two is that my variant of RLS appears to be partially an over-excitation of the spontaneous muscular reflex system. (For reference here, I quote from Encyclopaedia Britannica: “The familiar knee-jerk reflex, tested routinely by physicians, is a spinal reflex in which a brief, rapid tap on the knee excites muscle spindle afferent neurons, which then excite the motor neurons of the stretched muscle via a single synapse in the spinal cord. In this simplest of reflexes, which is not transmitted through interneurons of the spinal cord, the delay (approximately 0.02 second) primarily occurs in the conduction of impulses to and from the spinal cord.”)
Thirdly, my experience is that anything which reduces the level of micro-sensation in the limbs will alleviate my RLS. One of these is Yoga-type stretches, which appear to allow the muscles to get rid of accumulated chemicals such as lactic acid, and therefore reduce sensation. For many years I successfully treated my RLS by getting out of bed and doing yoga, sometimes 3x per night. Certain postures are more effective than others. For this, of course, one needs a warm bedroom and space for the exercises. Eventually, however, the disease progressed beyond the ability to control it with Yoga. The next step was Sahacharadi oil. This is a herbalised massage oil from the Ayurveda tradition. Rubbing it into the muscles seems to reduce the over-excitation of the reflex system, and I found it very effective for many years, when added to the yoga. Of course it is messy, and one needs several layers of sheets and regular washing of them, but it worked for me. Eventually however, after 40 years, the disease had progressed to the point where I had to take recourse to drugs like dopamine agonists and gabapentin, which I have been on for 10 years now.
Anyway, my Point Three is that the combination of yoga and sahacharadi oil were very effective for a very long time at controlling my RLS, seemingly through reducing micro-sensation in the limbs.
I hope this little essay from an old codger might constitute at least a tiny contribution to the understanding of one variant of RLS.
Wishing good sleep to all my RLS friends.
Wairahi
(BTW, my nom-de-plume Wairahi refers to one of the beautiful places I was fortunate enough to grow up in and means “thundering surf.”)
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Wairahi
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Thanks Wairahi.I too experience violent jerks but I also get the horrible 'wound up tight as a drum' sensation that builds up in waves and I have to move to release the pent up energy. I also find yoga stretches help but now only medications control my RLS.
Thanks for sharing.
Thundering surf sounds lovely.
Thanks for sharing your experiences which are an interesting insight into how different people interpret their RLS.
As for your first experience, this is not at all uncommon. My experience of RLS is almost identical to yours. I have a brief "electrical" feeling followed by involuntary movements. I call it twitching. I've observed that many others experience this too.
I used to get more of the crawling sensations and urge to move, but as time went by and especially after taking a dopamine agonist for a while, I got the twitching. I find it less unpleasant.
As for your second experience, what you say is not really accurate.
The reflexes you mention involve sensory nerves that go to the spinal cord connected to motor nerves that go immediately back to muscles, as you say yourself. This is a very fast "defensive" involuntary reaction. The nerves are "peripheral" nerves.
However RLS involves sensory nerves going to the brain and motor nerves coming from the brain. Although as you experience stimulation of peripheral nerves can affect RLS it is mainly a condition of the central nervous system.
If the sensory nerves didn't go to the brain, you wouldn't experience any sensation.
The main cause of RLS has been shown to be Brain Iron Deficiency (BID), which in turn leads to dysfunctions of the (brain) neurotransmitters involved in RLS, dopamine, glutamate and adenosine.
This is the reason that iron therapy is recommended as a first treatment for RLS.
This is also why the two main medicines for RLS work.
The dopamine and glutamate issues means that nerves become oversensitive or excitable.
I believe you're right that yoga and other types of stretches can relieve RLS symptoms, so that's always a good thing to suggest.
As well as avoiding things which can stimulate oversensitive nerves. There are other things that can make RLS worse. There are for example many drugs that do this.
Unfortunately, when RLS gets out of control then we need drugs.
Dopamine agonists have been found to be a short term solution only. In the longer term they can cause complications. It's really quite good to have taken an agonist for 10 years and not have a problem.
If you do start to get any worsening of your symptoms, then the dopamine agonist may be a factor in this.
Hi yes I agree, I do some yoga exercise in the night which seems to alleviate it. Luckily I can do mine lying in bed. It is on the calm App called body calm. Also I find singing along to my favourite music takes my mind off it. Just keep trying anything people advise. Good luck with yours x
I’m with you 100% on the exercise and muscle soreness exacerbating RLS, it’s exactly what happens to me, and similarly stretching can help alleviate it although the most effective cure is movement for me.
The urge to move sensations are also similar although nowhere near as intense as my RLS only really became an issue a couple of years ago.
I find the reflex analogy interesting because It’s a scenario where an action at the far end of the nerve (away from the brain) can provoke a nerve response. There may be something in common with the fact that exercise and a muscle soreness increases the likelihood and intensity of RLS, again an action at the end of the nerve moderating a nerve impulse. There is an article which has been shared a couple of times previously which shows that excitation of the nerve endings in the muscles predisposes them to RLS movements. I long for the day when somebody really understands all of this and can explain this complex issue
Thank you for your post. I 100% agree that hearing of other people's experience is really helpful in this idiosyncratic condition. My rls corresponds more with the 'classic' description but I do find yoga helpful also. Unfortunately, it is not enough to overcome symptoms sufficiently to allow sleep and, like Julesg, after much experimentation across a wide variety of possible non-pharmaceutical options, including dietary and life-style changes, I have found that only medication affords a reliable solution for me.
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