What exactly is it?

[Yarn1985]

I’ve been searching the posts to see if anyone really knows what exactly RLS is? Does anyone know if any physicians are members and monitor the feeds? I was just curious.

[LotteM]

It is a neurological condition of the brain.

Briefly. As far as currently know, it is iron deficiency in a part if the brain (brain iron deficiency BID), the substantia nigra. Due to this, there are not enough dopamine receptors making the daily (read: nightly) drop in dopamine lower than in people without RLS. This damages the protective myeline layers around the nerves that connect to the (leg) muscles and causes the urge to move. What causes the BID is unknown. Genes play a role, as it runs in families. Secondary, things that lowers iron absorption (gut issues) or increases iron use (pregnancy) increases the risk of RLS.

[Eryl]

In many cases it's due to systemic inflammation causing the nerves to be hypersensitive. Systemic inflammation can have multiple causes, the most common is high blood sugar form diet, another common cause can be the consumption of refined seed oils. Some people may be sensitive to oxylates or nightshades. in rare cases it can be caused by heavy metal poisoning.

A lot of people have eliminated their RLS by adopting a strict low carb diet free of all processed foods.

[Yarn1985 in reply to Eryl]

Do any physicians weigh in on this forum? Compared to many posts I’ve read here, my RLS is mild., and I think may be somewhat diet related. I’m not diabetic but am experiencing neuropathy in my feet. I have a neurologist appointment coming up for that problem. Wonder if it’s related to RLS? Wonder if anyone else is experiencing that?

[Eryl in reply to Yarn1985]

There is a link between most neurological conditions and sugar, just google sugar and the name of the condition. e.g . 'sugar MS' and you're sure to come up with a result linking the two.

[Joolsg in reply to Eryl]

MS is now proven to be caused by Epstein Barr Virus Eryl. Not sugar.

[Eryl in reply to Joolsg]

It may be a possible trigger but not the only cause. nih.gov/news-events/nih-res...

[Joolsg in reply to Eryl]

Eryl I've had MS for 30 years. My aunt died of it. My cousin.& sister have it. I know all there is to know about it. My family took part in the Cambridge MS gene study which identified the genes that are involved. As well as a genetic disposition, an environmental trigger was suspected. That is now found to be Epstein Barr Virus.Sugar MAY cause inflammation but it is not the reason my family has MS.

[Eryl in reply to Joolsg]

Genes don't cause MS but merely increase the propensity which means that you have to be more careful in avoiding the true causes. msfocusmagazine.org/Magazin...

[Joolsg in reply to Eryl]

I know genes don't 'cause' RLS. The Cambridge study identified the genes linked to MS and as I said before, the environmental trigger has now been found. It's Epstein Barr Virus. The majority of the population have EBV but most don't have symptoms. The virus, interacting with the 'genes' triggers autoimmunity.They have done trials using T cells from people with natural immunity to EBV and it has been very successful.

They are now working on an EBV vaccine.

The article you attached does not say sugar causes MS, it you should eat a healthy diet and choose fruit and vegetables over processed food and eat sugar in moderation. Basic, sensible, healthy eating advice which I've been following for years.

The best diet to follow for MS is intermittent fasting which 'reboots' T cells. Most MS specialists are now recommending a 5/2 weekly fasting diet where you eat your normal diet for 5 days and eat 25% of your normal calories on 2 days.

I already do that Eryl.

Sugar. Did. Not. Cause. My. MS.

I am, as always, delighted you found the trigger for your RLS.

[Eryl in reply to Joolsg]

Sugar contains no nutrients. youtu.be/KLjgBLwH3Wc(Not working as expected?)

[Joolsg in reply to Yarn1985]

No. This is a member led forum but there are a few members who are also doctors. They also describe poor treatment from their doctors and neurologists.It is linked to the charity RLS UK.

RLS is not taught at medical school here in the UK and it isn't taught in the USA either. That is why this forum exists. Most people join because their doctors know nothing and have blindly prescribed dopaminergic drugs before carrying out detailed investigations as to the cause.

The Mayo algorithm now makes it clear that iron levels must be considered first and any exacerbating meds like anti depressants and sedating anti histamines, statins, beta blockers & PPI replaced with RLS friendly meds.

[SueJohnson in reply to Yarn1985]

Have you had your ferritin tested?

[K2D2 in reply to Eryl]

This is interesting to me, as I had not heard it before. My RLS started after I was diagnosed with a rare form of leukemia. People who have this form of leukemia (known as LGLL) are at much higher risk of developing inflammatory diseases such as rheumatoid arthritis, lupus, and Sjogren’s. So now I am wondering if there is linkage to my RLS.

[Eryl in reply to K2D2]

The way all cancers are detected is by injecting radioactive glucose into the body because cancers hijack the cell's energy system to make it hungry for glucose which it ferments rather than reacts with oxygen. Watch Dr Thomas Seyfried's lecture on 'cancer as a metabolic disease with metabolic solutions' on youtube.

[Matrix]

All I know is that it’s excruciating.People above know more than me .When it’s bad I get full body RLS the whole of my body well it’s like every nerve in every part of my body is exposed and I walk up and down for hours and hours I have done it for up to eight sometimes four I can’t sit or lie .💕💕

[SueJohnson in reply to Matrix]

Are you taking any medicines for your RLS?

[Matrix in reply to SueJohnson]

No I have never been offered any and they know I have it . I’m on so much medication as it is for other things It hurts so bad x🥰

[SueJohnson in reply to Matrix]

What other medication are you on? And any OTC supplements? If you list them I can tell you if any of them make RLS worse and can perhaps give you a safe substitute

[Matrix in reply to SueJohnson]

That’s really sweet of you at the moment I’m looking after grands two of them we usually have one but Monday added a very lively four year old because school has broke .I’m tired already and we got both staying over Saturday so all day until Sunday who knows when .💕💕

[SueJohnson in reply to Matrix]

Isn't it great to have grandchildren even if they do tire you out? I have one, but he is now off to college this fall.

[Matrix in reply to SueJohnson]

I have six altogether and I love being with them .The two we look after live across the lane from us .we look after them two days a week they are 2 and four years old they are lively and I have multiple health probs but somehow I cope .I don’t know how some days as I have fibromyalgia and chronic fatigue syndrome as part of it .I keep going .💕

[SueJohnson]

Gabapentin which is the first line treatment for RLS also treats neuropathy. So that is a bonus. If he prescribes gabapentin, the beginning beginning dose is usually 300 mg gabapentin. It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at

Https://mayoclinicproceedings.org/a...