Hopefully Scientists are following up on this study from 2018

[ziggypiggy]

"Until now it was thought that RLS is caused by genetic, metabolic and central nervous system mechanisms. For the first time the researchers show that, in fact, it is not only the central nervous system but also the nerve cells targeting the muscles themselves that are responsible.

This new research indicates that the involuntary leg movements in RLS are caused by increased excitability of the nerve cells that supply the muscles in the leg, which results in an increased number of signals being sent between nerve cells.

Targeting the way messages are sent between nerve cells to reduce the number of messages to normal levels may help prevent the symptoms of RLS occurring. This could be achieved by new drugs that block the ion channels that are essential for the communication between nerve cells."

[Hidden]

Thanks for sharing this. I read the same myself some time ago.

Can you provide a link to the study?

[LotteM]

I have read the paper when it appeared. Personally, I think it is part if the chain of events resulting in RLS and actually more a symptom than a root cause. It is very interesting in that it shows that derivative parts of the chain of actions that lead to the urge to move apparently have changed too. The bad implication may be that a chance in such a derivative may make the chain more resilient to a cure.

I am quite sure te research will be continued, but elucidating the cause and affect chain of the urge to move has proven a difficult process. And scientific research is in itself usually a very slow process. I wouldn't hold my breath. On the other hand, this is 'new' in that it looks at RLS from a different angle, which is very valuable in increasing (scientific) understanding of RLS. The more angles the better.

[BocaMom]

Would love to read this study - do you have a link?

[danamias]

Yes, a link to the study please

[Eryl]

Or you can do it by reducing inflammation in the nerves caused by the food you are eating, namely carbohydrate and refined grain oils.

[Alex2308 in reply to Eryl]

Would a simple anti-inflammatory drug help then?

[Casscass1 in reply to Alex2308]

I have RLS and psoriatic arthritis. I have always felt there was a link to autoimmune and RLS but no one has really said it out loud. I am on otezla for my PsA and it has not helped the RLS at all. I do take Pramipexole for the RLS and iron which is currently working.

[WideBody in reply to Alex2308]

Yes, I did a poll in a different group, roughly 30% said 2 * 200mg Ibuprofen helps. Can confirm, it seems to help me, takes 30-40min, I hope that trick never wears off. I only take it on bad nights. I am not saying it fixes my RLS, but I do think it helps.

[Eryl in reply to Alex2308]

You can try an anti inflammatory drug, but drugs have side effects. Until I identified all sources of inflammatories in my diet, I would use Voltarol occasionally but it's not recommended for using for more than a few days at a time. Now that I have cleaned up my diet I don't suffer from RLS and I don't take any drugs for it.

[Boldgirl45 in reply to Eryl]

Hi Eryl - could you list the inflammatory foods? This is very interesting.

[Eryl in reply to Boldgirl45]

You'll find that on the internet under 'anti inflammatory diet'. The lists usually include meat as one to avoid, but I think that it's corn fattened meat that you need to avoid as most nutritionists seem to recommend eating grass fed meat.

[Boldgirl45 in reply to Eryl]

Thanks so much Eryl

[Hidden in reply to Eryl]

I know many people have tried different diets for RLS, some work for some but not others. When I search anti inflammatory diet there are many different regimes. Can you tell me more about yours beyond what you've described above?

[Eryl in reply to Hidden]

I've found that cutting out almost all sources of refined carbs and grain oils, and increasing nutritious foods like oily fish, leafy greens, berries and seaweed, and supplementing Vit d3 over the winter has worked for me. Without knowing specific differences it's hard for me to know what you're referring to.

[Eryl in reply to Hidden]

The first thing i thought triggered it was E202 or potassium sorbate food preservative. Since i've been on a low inflammatory and hence zero processed food diet, there's no reason to test myself with it.

[Hidden in reply to Eryl]

Thanks Eryl, that's useful to know.

[Munroist]

I think this is the linksciencedaily.com/releases/2...

I think this is part of the problem, I'd imagine that after a lot of exercise the cells and nerves in the leg muscles are more excited and I certainly find I twitch more after intense exercise and that the twitching seems to be focused on the muscles which were worked hardest. However I also think that there are other things at play in the nervous system and the researchers seem to agree as they say "it is not only the central nervous system".

[WideBody in reply to Munroist]

Humble brag, I am doing 200km this weekend on my bicycle. I guarantee fasciculations will be in full swing. Before my infusion it was fasciculations 24/7 now it is only after exercising. I don't think is just the central nervous system, I am beginning to think inflammation plays a part. But what is inflammation? When I investigate "anti-inflammatory diet" I get even more opinions than I get when I try to investigate RLS.

[Munroist in reply to WideBody]

I have also done a little follow up into the possibility that post exercise inflammation is related to the intensity of the RLS but it was very inconclusive. Certainly after hard exercise there is a degree of muscle damage and, I believe, inflammation but specifically with cycling I couldn’t work out whether using lower gears and spinning more would cause less damage that using higher gears and stressing the muscle more. My main anecdotal conclusion from my own rides was that taking it easier caused less RLS afterwards, and that starting at lower intensity resulted in lower overall fatigue and in many cases resulted in better times as I was in better condition at the end of the ride. Good luck with 200km!!

[WideBody in reply to Munroist]

I know I always get my hopes up, but starting from this thread, I started searching anti-inflammation diets, which led to SIBO, which led to SIBO and RLS.

I don't know, but I have some really interesting observations/symptoms especially after eating. I have already placed a call with my Doctor, I would like to do the test.

[grandpianoman in reply to Munroist]

I, too, find that the longer I walk/hike, the worse my legs are that night. Heat and wrapping them and stretching are helpful, but as you know, sometimes nothing will override the restlessness.

After 5 decades of taking dopamine agonists and a few years now of opioids, I have developed sleep apnea. I wonder if that is a common thing that shows up for those of us who've been on these harmful yet necessary drugs. I tell people, "I'll die faster from lack of sleep than from the drugs," and yet, the drugs may kill me yet!

Will request SIBO test next. I do notice that I can't eat certain foods without consequence, and that goes beyond the usual "no gluten, no sugar, no caffeine" mantra for RLS sufferers.

[ziggypiggy in reply to Munroist]

Thanks for posting the link. This article references the study from The Journal of Physiology. I don't have a direct link to the actual study.

[WideBody]

This is really interesting information. Thank for sharing it. I have a lot of reading to do. I think the researchers would be ridiculed in other groups specifically. "This new research indicates that the involuntary leg movements in RLS are caused by increased excitability of the nerve cells that supply the muscles in the leg,"

In a different group, I was told that involuntary movements are NOT part of RLS. Everything I have read and everything I have experienced says otherwise.

I remember having the discussion with my doctor, these movements are NOT voluntary, it is not an urge. Obviously yes, the urge exists, but my jerks and contractions are not voluntary.

[ziggypiggy in reply to WideBody]

Yep, lots of opinions out there, as there should be. RLS is fairly custom made to the individual. The underlying description of the symptoms are similar but the intensity, duration and how they effect yout mental health in particular leads to a litany of causes, cures and remedies. You know your body best.

[Tecumsehmoe in reply to WideBody]

I've read that the "involuntary" leg movements of what's most often referred to as RLS are really a function of the condition known as PLMD or Periodic Leg Movement Disorder, while RLS refers to that related "involuntary" condition of unease, feeling overwound and needing to get up and walk with immediacy (I'm using quoation marks around the word involuntary here as it strikes me that each of these conditions is "involuntary" in differing ways: The first involving a wholly unsensed and unanticipated movement, and the second an altogether highly-sensed and abosolute need to move that cannot be denied). I'm not at all sure if these designations are correct, however.

[Alex2308]

I tried not to eat at all for 10 days. My RLS was 10 times worse during the fast. Inflamation is not the reason.

[Josana13]

My restlessness is in my feet. What I feel is electrical current going through my feet at a fast pace. Then my feet start kicking. I have always felt that RLS was caused by over firing of the nerves. Years ago I got injections on my legs to try to control it, but they only worked for a few days. I really believe that anxiety and RLS are caused by over firing of the nerves.

[Munroist in reply to Josana13]

It’s got to be a combination of things. For example why does “classic” RLS start late at night or when you go to sleep. That doesn’t seem to relate to exercise so there something independent of nerve firing or excitability. However the fact that neuropathy and nerve sensitivity such as caused by spinal injuries or issues is often connected with increased RLS, and the above connection with exercise and presumed nerve stimulation both seem to indicate that increased nerve activity or sensitivity makes you more vulnerable to RLS when it happens. This multi-factor cause may also be related to why there are multiple disparate treatment paths such as opioids, dopamine agonists and alpha2delta Ligands. Until the exact end to end mechanism is understood we are unlikely to see a really effective treatment unless there is a happy accident and someone develops a drug which helps resolve the condition and give insight into the cause that way. In the meantime we just have to keep watching and exchanging information and trying to help each other.

[Josana13]

I hope so because it is such a horrible "syndrome". Doctors do not take it seriously. I think the happy accident will be when they suffer from RLS and not sleeping and then it will be a serious problem, anyway here in the USA. I sleep four hours and 3 or four days. Constantly nauseated and dizzy and my blood pressure gets real high. I've been doing that for so long and I know that my body is wearing down from it. I am already 72 and I get sicker from not sleeping. By the way, do most RLS sufferers also have Fibromyalgia? Years ago I had a cervical fusion and shortly after developed Fibromyalgia. Then within two years had five neuroma surgeries, and ended up with RLS and FMS. It is what it is. God bless all of you and give us all patience, peace, and perseverance.

[Fachgynan5]

After 20 years of these involuntary movements, I have noticed that the severity of the movements (for example my foot flipping up as if my toes are heading for my shin) are comparable with the reaction to being tickled. This particularly applies to the sudden and violent knee-jerking I experience, which is what would happen if my foot was tickled. I wondered if there is a 'tickle mechanism' that RLS is related to?