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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