New Member saying Hello.

[CalmRestPeace]

Hi everyone.

I'm a new member looking forward to learning all I can about Restless Legs Syndrome.

I had severe restless legs for more than 20 years. I went through the usual suicidal thoughts and regularly wanted to chainsaw my legs off through the endless sleepless nights.

Experimenting through trial and error (that lasted several years) I found a collection of natural remedies that worked for me.

My RLS is no longer an issue.

However, like my recovery from Alcohol and Drugs (37 years clean and sober) I know that I will never be beyond the point of never returning to the way things were.

A healthy DAILY maintenance is required.

I consider this to be a support group that will help me to remained distanced from the nightmare I left behind.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

You say RLS is no longer an issue but on your profile you say "Looking for natural ways to lessen Restless Legs" so I have 2 questions - is your RLS completely under control and what are the natural remedies that worked for you?

[CalmRestPeace in reply to SueJohnson]

Hi Sue

Yes, it's under control but I'm always looking for improved ways of living.

For instance I had a pretty good diet, but still a few issues in other areas of my life.

A friend suggested I check out Anthony William's diet regime. I did and that was a life changer.

I also discovered new alternative therapies through the years. The most profound ones were Near Infra Red Light Therapy (photomodulation), Emotional Freedom Techniques (EFT) and a daily glass of celery juice (from Anthony William).

These were all game changers that helped take my health and peace of mind to the next level.

Meditation is also an important part of my recovery.

And lastly, lots of anti-inflammatory supplements, herbs, vitamins and minerals.

I believe with 100% certainty that inflammation is the cause of restless legs, so my whole strategy is based around addressing the inflammation issue.

Thanks for welcoming me in!

[SueJohnson in reply to CalmRestPeace]

It is certainly one of the causes but there are many others especially low brain iron. It would be great if there were only one cause then we would all be cured.

[Help1963 in reply to SueJohnson]

Hi Sue, what's your thoughts on the post from CalmRestPeace ? is there any evidence in what he has stated regarding inflammation etc

[CalmRestPeace in reply to Help1963]

Because of the way science works, researchers are not allowed to say "X is certain."

Any findings have to be re-tested and then tested by others. It goes on for years.

Having read hundreds of studies involving Restless Legs and Inflammation, the study below is the closest a researcher has come to confirming the relationship between inflammation and RLS that I've ever run across.

The study was called "CHRONIC INFLAMMATION MARKERS AND CYTOKINE-SPECIFIC AUTOANTIBODIES IN DANISH BLOOD DONORS WITH RESTLESS LEGS SYNDROME"

From that study's CONCLUSION:

"Our results support the existence of links between systemic inflammation and RLS."

pubmed.ncbi.nlm.nih.gov/351...

[SueJohnson in reply to Help1963]

Of course inflammation can make RLS worse - lots of evidence for this, but it is not the only cause of RLS being worse. And it is not the cause of RLS - ie everyone who has high inflammation will have RLS. If that were the case the number of people with RLS would be a lot higher. And as Joolsg said having a low inflammation diet will not make RLS better for all. Nor do all of us have inflammation.

[CalmRestPeace in reply to SueJohnson]

We disagree on this.

Also, testing for inflammation is far from an exact science. Scientists use the current known biomarkers to determine whether inflammation is present or not in someone but they are still in the dark ages. Hopefully some day soon they discover better biomarkers that can help detect the entire spectrum of inflammation.

[ChrisColumbus in reply to CalmRestPeace]

Did you ever take dopamine agonists for RLS?

I suspect not, as I never did (or take any other meds for RLS) and found that by supplementing with magnesium and cutting out or reducing a few things in my diet that I've been able to stop RLS symptoms (except when I splurge or ignore something that I list in my profile).

Unfortunately, I believe - and this is just my theory, not proven by any scientific paper - that diet changes and anti-inflammatories (1) only help some RLS sufferers, it's not a universal panacea and (2) tend not to help someone who has previously augmented on a DA.

By the way, we do ask new members to complete their profile as much as possible:

healthunlocked.com/rlsuk/po...

[CalmRestPeace in reply to ChrisColumbus]

Hi Chris

No, never took them. When I read what medical conditions they were actually created for, and the potential side effects, my internal alarm went off. It really prompted me to find another solution. Kind of like being shot out of a cannon.

About the dopamine agonists ... I'm a firm believer that any damage done can be repaired. The body is an incredible instrument. One only has to read some placebo effect stories to understand that. We can't imagine in our wildest dreams the body's potential to heal.

Thanks for your input. Glad things are going well for you.

I'll look into the profile.

[CalmRestPeace]

Actually research shows that all of these peripheral events, such as low brain iron, are a result of inflammation.

Here's study I just grabbed ...

Iron, Neuroinflammation and Neurodegeneration

"Therefore, as we have previously suggested, a judicious combination of anti-inflammatory and chelation therapy might be the most appropriate therapeutic approach."

mdpi.com/1422-0067/23/13/7267

I'm sure there are many more.

My belief is based on my experience and reading hundreds of scientific studies. Plus my own experience.

So, we disagree.

[Elisse3 in reply to CalmRestPeace]

So what about inherited RLS genetic passed down from a parent in my case from my father also my brother suffers with RLS. It can run in families. They found think it is 6 genes that can point to RLS

[SueJohnson in reply to CalmRestPeace]

That study was for Parkinson's which is different from RLS.

[CalmRestPeace]

I recommend that you read about Epigenetics. They've discovered that there is a switch on genes that can be turned ON and OFF. So, we're not "stuck" with a condition that our parents had.

In other words, whatever genes you've inherited can be changed.

activemotif.com/epigenetics...

[Elisse3 in reply to CalmRestPeace]

Great!! Now tell me who is going to change my faulty genes so i can make an appointment ? 🙄

[Oscarcat63 in reply to CalmRestPeace]

I read the article.It talks about methylation/acetylation around the promoter regions in histone proteins......now I have an actual degree in biomedical science and I had a basic understanding of what they were talking about and that was regulation of genetic expression.

Nowhere in the article does it state that these can be reversed.

Neither does it talk about inflamation or diet.

Insinuating that all we gave to do is change our diet and we can change our genetic expression is coming across as 'victim blaming' to be quite honest.

I read the other articles too.

Are you a molecular biologist with a specialisation in gene regulation ?

[CalmRestPeace in reply to Oscarcat63]

There are thousands of articles and studies out there to read.

Not sure what you're implying here? Are you saying the switches can't be turned on and off even though all the epigenetic scientists say they can be?

Also not sure how this is victim blaming. I post this information for the people that are interested in it. You're obviously not one of those people.

People that are really interested will do their own research and won't ask me to keep spoon feeding them articles.

And they do exist by the way. To some people, hopefully many in this community, this is exciting news.

[CalmRestPeace]

The good news is lot of it can be done on your own. Diet is crucial.

Why don't you read up on it?

Here's a good place to start:

scientificamerican.com/cust...

[Elisse3 in reply to CalmRestPeace]

Still no proof that i can see that diet will change my genes and rid me of RLS. I would like to see studies where people have taken part in what food they have eaten or not eaten and how many it switched the gene off or how many it didn’t.

[CalmRestPeace in reply to Elisse3]

There are thousands of articles and studies that will show you how to turn genes on and off. This is science, not some theoretical mumbo jumbo that someone came up with. Epigenetics has blown everything they thought they knew about the human genome out of the water.

[Elisse3 in reply to CalmRestPeace]

Ok so why are people not coming forward to say they have used a diet and it’s turned the gene off and are free from RLS. ? That’s what i am getting at. Wouldn’t you think they would be telling the world. ? You can’t blame me for wanting to know . We have members on here who have used a diet because of inflammation causing their RLS. Jesus if i had the gene turned off and was RLS free i would be telling everyone i know who has genetic RLS i had done it. 😊

[CalmRestPeace in reply to Elisse3]

I think I mentioned that diet is only the important FIRST STEP.

With chronic inflammation you either keep pouring gas on the fire or you stop.

Pouring gas on the fire is continuing with your current inflammatory diet while choosing an anti-inflammatory diet is stopping.

To then extinguish the fire and repair the damage you need to do a lot more.

Once a person decides that they are willing to make the necessary sacrifices and move to an anti-inflammatory diet, that's when you also bring in a lot of supplementation to remove the chronic inflammation. Vitamins, minerals, herbs, supplements.

For example all the main vitamins, omega 3, magnesium, zinc, curcumin, licorice root and cat's claw would be a good start.

That's where alternative therapies also come in ... any that deals with healing inflammation will help. That's where I found recently amazing therapies such as EFT, Red Light Therapy and drinking celery juice. All are amazing anti-inflammatory remedies.

I also have a detox smoothie very day that includes frozen berries, Hawaiian spirulina, lemon balm, dulse, barley grass and glutamine.

Sorry if I didn't make that clear. Diet is an essential first step, but much more must be done, especially for very bad cases of RLS.

[Elisse3 in reply to CalmRestPeace]

I am talking about the genes passed down by a parent and according to you turning the gene off not about inflammation.

[CalmRestPeace in reply to Elisse3]

I'm not sure what you mean.

Here's a study that kind of makes my point on how epigenetics can help with all inflammatory conditions including RLS.

As the conclusion states, it's in its infancy.

Epigenetics of chronic inflammatory diseases

"The field of epigenetics of chronic inflammatory diseases has undergone a major transition. The shift from GWAS studies to EWAS and integrative omics is dynamic and current. There is increasing recognition that GWAS studies have only explained a minor portion of the heritability of these disorders. Furthermore, while candidate gene approaches have generated important data, EWAS studies have provided comprehensive analyses of epigenetic modifications. Important insights into the content of epigenomes in atherosclerosis, T2DM, and AD have been gained, but the data are largely descriptive and have only profiled a minority of epigenetic changes. Definition of the links between epigenetic defects and nonresolving inflammation or aging is in its infancy and determining which epigenetic modifications are casual, predict risk, or explain chronic disease pathogenesis remains a major challenge. Integrative analyses of the epigenome, genome, transcriptome along with the microbiome and clinical data are needed to generate a more complete picture of chronic disease risk, to stratify disease subtypes and to define relevant pathological mechanisms. The microbiome has already significantly advanced our understanding of atherosclerosis and is likely to make further important contributions to understanding the pathophysiology of other aging-related diseases."

ncbi.nlm.nih.gov/pmc/articl...

[Elisse3 in reply to CalmRestPeace]

I guess we will just leave it there as we seem to be at cross purposes You need to read back on the comments you said we don’t need to be stuck with the genes from our parents

[CalmRestPeace in reply to Elisse3]

I did say that because it's true. To my knowledge I never said it wasn't true.

Again, to summarize epigenetics:

We are not at the mercy of the genes we inherited. We can change them.

The old belief that "the medical condition I have is genetic, this is the hand I've been dealt and there is nothing I can do about" is no longer a scientific fact.

[Oscarcat63 in reply to Elisse3]

It's called 'moving the goal posts', Elisse.

[SueJohnson in reply to CalmRestPeace]

Interesting article, but it mainly talks about altering gene expression when we have babies and of course nothing about RLS. Not exactly what this forum is all about.

[CalmRestPeace in reply to SueJohnson]

You were asking about epigenetics. I suggested that you read up on it.

The whole idea is to change gene expression which can be applied to every medical condition in existence. No longer is someone "stuck" with their genes.

There are thousands of articles and studies to choose from that can help you to understand how the process of turning genes on and off works.

There are a lot of positive ways to change gene expression through diet. Exercise is another way.

Anyway, read up and you'll find all sorts of methods.

[SueJohnson in reply to CalmRestPeace]

I wasn't asking about epigenetics. You must have mean this comment for someone else. I just saw your comment and the link - read it and made a comment myself about it.

[marigold60]

Hi , it's great you've found a solution. I'm going down the same road as you. I started the Zoe plan last year, I've discovered the foods that work for me and those that don't. I'm still taking 400mg gabapentin but I don't need to top up in the night as I don't wake with twitchy legs. I'm also taking some supplements which I feel help. I've stopped cocodemal and ibuprofen too which was a Biggie for me.

[CalmRestPeace in reply to marigold60]

I checked out the Zoe Plan website. Looks great!

The supplements will definitely help.

Nice to meet you. Continued success!

[Joolsg]

I'm delighted it has helped you. Diet is certainly a factor for many with RLS.However, it will not solve all cases.

I have personally spent long, long periods on specific anti inflammatory diets, supposed to 'cure' MS and RLS.

They didn't.

I suspect there are many causes of RLS, the most common being low brain iron.

Professor Toby Richards recently explained to me that women are more likely to have RLS because of years of menstruation, several pregnancies and perimenopause. A pregnancy uses up nearly all a woman's iron stores.

Treat the iron deficiency early and quickly and a majority of women will 'cure' their RLS.

Spinal and brain injury and operations involving bones also cause RLS.

So, I agree that inflammation causes many cases of RLS, but not the majority.

If diet and supplements have cured your RLS, that is fantastic.

However, it will not work for everyone.

[DicCarlson]

To rely on William Anthony is a fool's errand - nice piece on him and the "true believers"...

vanityfair.com/style/2023/0...

[CalmRestPeace in reply to DicCarlson]

Anthony William changed my life dramatically with his dietary recommendations.

The article you point out is a well known article. They've taken one really sad story out of the hundreds of thousands, if not millions that he's helped, and focused on it.

You're judging everything about him on one article that went viral because the haters lapped it up.

Consider this. How about if someone wrote an article about the suffering of people taking RLS medication. What would that look like if they really bore down and found the worst experiences ever and wrote about it?

Beyond ugly right?

So, let's get real.

Anyway, you can get a better understanding of how many people Anthony William has helped by visiting the Instagram celery juice page. The before and after photos people post along with the testimonials is jaw dropping.

instagram.com/celeryjuiceheals

[Joolsg in reply to DicCarlson]

Similar article in the UK newspaper the Guardian. I'd never heard off Anthony Williams, and it seems he gets his information from the spirit world.

A healthy diet, high in anti oxidants will help most people feel better. That's just common sense.

theguardian.com/food/2019/a...

[CalmRestPeace in reply to Joolsg]

There's actually a lot more to it than that. His books are interesting reading. I highly recommend them.

[ChrisColumbus in reply to CalmRestPeace]

You say earlier:

"This is science, not some theoretical mumbo jumbo that someone came up with"

Good.

But then you advocate the writings of the totally unscientific, admittedly untrained, self-proclaimed 'Medical Medium'.

I accept that you found drinking celery juice etc etc helpful and its always interesting to read about what others have found helpful.

But I'm afraid bringing Mr Coviello into this - for me - undermines your claims to follow science.

Sorry.

[CalmRestPeace in reply to ChrisColumbus]

I posted many links to scientific studies about inflammation and epigenetics. These studies and what they discovered has nothing to do with me taking some of Anthony William's advice.

Anthony William also has nothing to do with my Restless Legs being healed. His advice helped to tweak my diet later.

So, you can question me all you want and question Anthony William all you want ... but that doesn't change these 2 scientific facts:

1.Inflammation is the cause of RLS and pretty much every other medical condition.

2. Epigenetics informs us that we can change the genes we've inherited. We are not destined to endure our inherited condition(s).

[ChrisColumbus in reply to CalmRestPeace]

Science: fine. But you are overstating what science actually says with regard to point 1 and are extrapolating without evidence to claim that it is the only cause of RLS. The only certainty is that it is *a* cause.

Diet and medications as triggers and exacerbators of RLS which can be combated by changes to both: fine.

Mumbo jumbo: no thanks.

[Elisse3 in reply to ChrisColumbus]

I was going to post those same words. Mumbo Jumbo glad you think the same.

[SueJohnson in reply to DicCarlson]

Love it - "William claims that, at four years old, a spirit visited him and gave him the ability to scan bodies for disease by sight. During Tisone’s hour-long $400 phone call with William, he said that heavy metals from vaccines caused her migraines"

[CalmRestPeace in reply to SueJohnson]

And the other 99% of the people that he helped, notice they didn't write an article about any of them.