My husband found this article on new findings about RLS. It’s not just the brain and spine causing problems but nerve cells communicating with muscles in the legs that are involved. Possible new treatments could involve drugs that block the ion channels responsible for communication between nerve cells.
It’s encouraging- but may take years before we see any helpful drugs.
Hi Jools, well-spotted by your husband. My gut feeling, however, tells me this is about the pathway, of how the sensations come about in the legs. Of course, we can continue to interfere with the pathway. I am wary, though. It feels more like targeting the symptoms tather than the cause. But how nice would it be if we would understand the true cause of restless legs. If so, maybe it could be reversed.
But, hey, just my gut feeling. For what it is worth.
I tend to agree with you Lotte. I have weird sensations all over my body due to MS but know the cause is scarring in the brain & spinal cord. But at least researchers are doing something.
The cause of these nerve disruptions is important to ascertain. My research has shown that it is caused by inflammation in the body, when the body has been in a long term state of stress due to physical and or emotional. So antinflammatiry diet and lifestyle helped by supplements should aid greatly in the relief. This has certainly helped me who figured my life was over as I couldn’t take it any more.
Glad to hear that. However, following anti inflammatory/AIP diets with supplements does not help everyone so clearly there are different causes/triggers for different people.
I have achieved quite satisfactory (not always perfect) sleep with increased ferritin, and minimum dose (100mg) Gabapentin...might try without this soon?
I take a generally good diet, alcohol and caffeine don’t seem to make any difference to me (in fact if I am a bit wriggly in the small hrs, a cup of coffee helps!)
RLS seems to be quite a spectrum disorder and management definitely isn’t “one size fits all “ that’s why this forum is so useful!!
My Doctor said that it’s the nerves being too sensitive and has given me pregabalin to dull the nerves and it seems to work together with the Ropinrole! My legs have been so much better!
Bee27, What is the dose and the proportion of each med? And how do you take them?
Was the Ropinirole not working?
I take Ropinrole (Requip) 0.25mg and Pregabalin (Lyrica) 75mg any time between 2 pm and 7 pm if I feel the legs coming on and then 1mg Ropinrole and 75 mg half an hour before I go to bed. My legs are not perfect, but I have been able to sit down in the evening and get a full night’s sleep! Hope this helps!
Thank you Bee.
There are several sufferers on this site who have found the best solution is mixing-and-matching, with each drug at lower dose in an effort to escape the worst of the side-effects.
I might follow your example, but with the addition of a low-dose opioid when things go pear-shaped - which of course they do, regularly.
The Ropinrole was not working any more and the doctor thought nerve tablets would be better.
We don’t know the cause. It is definitely not “simple genetics”. We knoe about the reduced D3-receptors in at lead tthe sunstantia nigra in the brain. And that may have to do with insufficient iron reaching the brain. If te latter is true, it is far from clear what causes the reduced brain iron; why does fewer iron reaches the brain compared to non-RLS people; what hampers the transition of iron from the body (blood) to the brain. No-one knows. I haven’t even seem these questions posed in the scientific papers.
I agree, it's not simple genetics. It involves 'gene expression'. i.e. that two people can have the same gene, but only one of them has a disease. That is down to what the genes are exposed to. So saying that we must accept rls because it's genetic is wrong. We can control the exposure and whether the gene is expressed.
Don't worry if you don't understand, it took me a while, and it's only recently that 'gene expression' has become a common term.
Well that is interesting but did you know RLS also affects the arms and actually all over the body can get the 'creeps'? Over the years of dealing with RLS I have seen so many "causes" I have run out of toes and fingers counting. Most recently, on this site was a reference that RLS is now listed as auto immune. That is rather interesting. I logged on to site and filled in their survey question which was rather interesting also. I had a doctor tell me most recently that most auto immune disorder come in threes. I actually have 4, but RLS is the most bothersome. Wonder if others also have this connection. Thanks for your updating info but actually agree with others it is chasing manifestations, not the cause.
Yes, during augmentation i had RLS in my arms, hands, back trunk and face. After withdrawal I now have it in just my legs and back.
I think several people on here do have Auto Immune Disease as well as RLS and some of those diseases MAY be the cause of RLS. For example, I have MS which causes demyelination - loss of the protective nerve covering in the brain and spinal column which in turn can cause RLS but RLS has other causes as well.
Again tackling the symptoms and not the cause. The basic cause is not the messaging system, but the sensory nerves which generate the false signal in the first place. Finding a drug to regulate the messaging is like waterproofing your ceiling to stop water coming through, rather than stopping the source of the water.
The most common cause of the false triggering is nerve damage, most likely caused by high levels of insulin in the blood to deal with high blood sugar caused by ingesting too much carbohydrate, coupled with poor nutrition which means that the nerve damage can't repair itself.
There can be other causes as well but you will be more resilient to those if you deal with the carbohydrate and nutrition aspects first.
Hi Eryl, I have never ‘seen’ this ‘cause’ of RLS mentioned/discussed in the scientific literature. Now I don’t pretend I’ve read it all, not by far. But your nerve damage theory seems to me again a result rather than a cause. In addition, indeed, in my days at uni (80s) I was still taught that nerve cells couldn’t repair or rejuvenate themselves. In the long meantime, that has been proven incorrect over and over again. Fortunately. I am aftaid the too much carbohydrate theory for RLS is not as simple as that. Carbs may play a role, I suspect (for what my opinion is worth), but maybe through tjeir effect on the gut biome and wverything related and resulting, rather than directly. Carbohydrates are the basic /essential souce of energy in our bodies. However, “too much” is never good of anything and for anything. To that I agree wholeheartedly. Except when applied to love ☺️ and a few other exceptions.
You're falling into the trap that nothing has changed since you learnt it almost 20 years ago. I heard on an episode of the game show QI that 30% of what they say is true now will have been disproved in ten years! The recent research on ketogenic diets show s that the body runs just as well if not better off ketones (bodies derived from the breakdown of fats) than it does off carbohydrate. If you are a research scientist you may like to look up ketogenic diets and the work on mitochondria and nutrition by doctors like Terry Wahls. This research has gone on in the last ten years, so it's no surprise to me that you may not have heard of it,
Yes, it is genetics!! It is the genes of superior beings and these inferior bodies that hasn't caught up to how special we are.
That is great news. I was told by Mayo it starts in the ganglia of the brain next to where Parkinson's is. I know that nerves are involved with this as it's all connected.
Wow, to all of the above. I am 77 years young and have had RLS since I was about 19. Back then it was sporadic and I just called it 'airplane arms' and 'bicycle legs.' Past 30 years have been on every thing I believe in and every thing I don't believe in. Here are a few of the "medical etiologies" over the past several years. Not enough magnesium, too much caffeine,not enough calcium, too little iron crossing over the blood brain barrier no matter what your blood serum, cortisole levels too high, adrenal exhaustion, too much glutamate in the brain (I was at John's Hopkins Hospital last year), sacral compression, high inflammation throughout your body,, genetics and the latest is, it is an auto immune disease. Reading back over all of the above, Eryl has said several times we are chasing the symptoms not the cause. She is absolutely correct or my RLS would not still be my side 'kick' as I have tried everything. MS does not CAUSE RLS nor does any auto immune disease. You may have secondary RLS with kidney failure or possible MS but not primary RLS. Since many of us do not have kidney failure or MS but the symptoms with out a known etiology. There may be a connection that auto immune diseases are more prevalent in some folks but not the cause. The cause of auto immune needs to be addressed.
Here is a strange one which I have mentioned before: if I drink caffeine in the middle of the night because my legs are dancing, they stop. Others have tried this and said it worked and others said they actually were doing the same. Here is another, bad news one. A friend of mine and myself both had onset at the same age. Both of us ate the same thing, same brand for same reason in the middle of the night. We both would eat a LARGE bowl of Cheerios with lots of brown sugar and milk. Yes we both gained weight but for both of us it stopped the leg dance and we could go back to sleep.
So many of us wanting to get off medication do all kinds of weird and not so weird things that actually work. Sadly we are still chasing symptoms, not the cause. That's all folks, carry on
Wow, this is really complicated. I think great progress has been made in some respects over my lifetime in respect of understanding RLS. When I first realised I had it I wasn't aware there was any effective treatment. (You might say there still isn't).
This study has made me aware that RLS is not just a single phenomenon i.e. in the brain, but also in the spinal cord and now, peripheral nerves.
It clarifies for me that there can be involuntary movements in RLS not just the urge to move.
It explains the relationship with PLMD.
It indicates how augmentation might occur.
It identifies that RLS is a spectrum disorder, i.e. more or less everyone has it, it's just a matter of degree.
like other "matter of degree" conditions there may not be any single one prime "cause".
The human machine is such a fine tuned mechanism that the slightest fault can throw a whole system off. Sometimes I wonder that it can function at all.
It does point to treatment being a combination of things rather than just a single thing as DAs.
So even if this is just symptom chasing, it still might lead to improvements in treatment which is great.
It's possibly very selfish of me, but at my age whatever fault or faults in my constitution is resulting in RLS may be unfixable. Fixing the symptoms effectively would be more than acceptable. I hope I live long enough to see it, but doubt it.
Which makes me think that the theory of Kuhbler Ross might be applied to RLS. We can get angry about it, get depressed about it, bargain about it, can't really deny it, but there may be some mileage in accepting it.
Hi, Jools, this is interesting. However, I doubt this could lead to a new treatment. Anything that targets nerve synaptic ion channels would likely target them anywhere in the peripheral nervous system. Including, say, nerve pathways to the heart. So I think there would be too many off-target effects. I could be wrong, though, so it will be interesting to see if they could come up with a targeted approach.
Except there are no "involuntary leg movements in RLS". The movement is voluntary. Sounds as if these "experts" are confusing periodic limb movement disorder (PLMD) with RLS. While PLMD very often occurs along with RLS you do not have to have PLMD to have RLS. It is not part of the diagnosis. To me this is a study about PLMD not RLS.
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