Is food the cause?

[SLMCP]

Hi there, I am guessing this is a US thread, and that some of the drugs are the same if not with different names.  This is just a short post for now, but I have been reading  about a lady from the US - Marie Goodwin - who claims that FOOD is the RLS culprit and that for $29.95 you can buy her online book and find out the cure.  Well, for that amount I think it is worth having a look. However, I wondered if anyone had heard of her, or indeed this 'cure'? Thank you.

[Hidden]

Yes, i have heard of her, and she used to say it was salt that caused RLS.   She has no cure, because there is no cure for RLS.   My opinion, save your money.  

People from all countries are welcome to this forum, we have a few people from alot of different countries on here.

[Madlegs1 in reply to Hidden]

It's WWW gives it away- world wide-people  from all over the world and all time zones come together on this brilliant site- but I'm  guessing it's  primarily  UK and Europe. I'm from Ireland - which is a RLS information desert.   For USA ,  you have the world authority in Dr Buchfuhrer of rlshelp.org,  not as good as this site 😂- as being a bit tricky to navigate and search - but excellent  for personal information  and advice. And you will discover you are not alone.  Such a pity he  is so far away.

As regards food being a trigger- YES - It most definitely is one strand- I am  affected by salt , rising agents , sulphites  (as in beers.😀 ) colourings. And many more. Certain medications are dynamite.  Others are affected by Oxalic vegetables( celery , leeks , tomatoes  etc) - the list is as endless as the number of  sufferers. 

We do need to differentiate between  triggers for rls  and plain food allergies and intolerance - such as chocolate, caffeine, gluten ,  dairy etc. Also just plain withdrawal  symptoms - I think  this is a major factor in post operative rls- it's possibly a reaction to pain medication tapering- but we are afraid to wait it out and instead just treat for full term rls? ?

There are many people on the Internet preying on all kinds of pain sufferers - selling the 'Cure' - if they were genuine , they would give the solution free. No one who has experienced rls and discovered the cure could morally keep it to themselves. Hence this site with so many individual  contributions.  Some work - some don't - but we are open to  them all.😎

As Elisse says - keep your money - but do go easy on the salt!!!!

Good luck.

[SLMCP in reply to Madlegs1]

Thank you.Did it take a long time for you to find out the food groups that trigger your RLS? I have to say I am so desperate to find out more that for $30 I just might see what she says. And yes, I will SHARE it with everyone!

[Madlegs1 in reply to SLMCP]

Yeah- I  have experienced  rls  for as long as I can remember - 65years at least. Plane journeys as a five year old were a nightmare. 

Finding your food triggers  is a long process of experimentation  and keeping a food diary .- just Google  rls and food triggers - you will have weeks of happy reading. BTW - distraction is excellent  for mild rls. I do crosswords and codebreakers. Good luck. 

[Skarlet]

I've read that RLS is linked to a lack of dopamine. It can is also relate to anaemia.

[Hidden in reply to Skarlet]

Rls isnt from lack of dopamine, we have enough of it, but it doesnt get to where want it too. 

its our ferritin level that needs to be checked to see if its low

[SLMCP in reply to Hidden]

Yes, apparently my ferritin levels, etc are fine and have always been.  I think it's the 'misfiring' of the Dopamine that is the problem, and it is not known why.

[Skarlet in reply to Hidden]

As nothing is proven either way, you can't really say that 'it's not a lack of dopamine'. That is just a study I read last year, I'm not saying it is concrete. 

[Skarlet in reply to Skarlet]

Just to clarify this is a section of what I've read previously: 

 Symptoms tend to become slowly worse over the years. It is thought that the cause may be a slight lack of, or imbalance of, some brain chemicals (neurotransmitters), especially one called dopamine. It is not known why this should occur. There may be some genetic factor, as primary RLS runs in some families.

[Hidden in reply to Skarlet]

Skarlet, there is an astounding amount of research that has been done in the field of RLS and I believe a near complete description of what is involved.  Please scroll down and see my post titled "some answers."  And yes, RLS always "presents" with very low levels of brain iron and lousy dopamine receptors because human receptors need iron to be big and strong.  We have plenty of dopamine but the buses aren't running very well so to speak.  That dopamine needs to travel down our spines (aka central nervous system) to our legs and arms.  It is this transmitted dopamine, called a neurotransmitter that quiets our arms and legs.  So we essentially have a drip of dopamine going through our CNS whereas the rest of the world seemingly has a stream.  That drip may be enough for a long time in our lives (or not) but then something happens.  We get old and so do our already lousy receptors.  Or we injure our spine and now there's a roadblock as that drip is trying to make it's way to our arm and legs.  Or something happens upstream like we start to ingest dopamine antagonists ie antihistamines, antacids, melatonin, antidepressants, HRT, statins.  I'm sure certain foods can act as dopamine antagonists.  Certain foods contain melatonin.  Histamine is a dopamine antagonists so allergies, including food allergies, should technically be able to trigger or worsen our RLS.  Listen, the vast majority of the world can have allergies and ingest one or all of the above substances and never so much as feel a twinge of RLS.  It is only we with genetically (maybe our genes caused it) anemic BRAINS (not bodies) and the resultant lousy receptors that are going to be affected  by these substances.  These things don't cause RLS they just worsen it or trigger our predisposition to it.  And another thing, everyone's serum iron (not serum ferritin) falls at night.  But the rest of the world has some iron reserve in their brains and when needed (like at night) can call upon it and their dopamine receptors keep humming along.  But we have no reserves and really depend on that free floating iron in our bloodstream so when it drops at night we get RLS while the non-RLS world does not.

[Skarlet in reply to Hidden]

I'm just stating some medical research other than what you've read, it's okay for us all to contribute information. I have done quite a lot of reading since I plan on studying medicine and I've had anaemia for a long time. My sister is also a vet and animals other than human can become anaemic. I have quite a few sources to learn from, not just the Internet.  I appreciate all contributions but I would never outright dismiss something because I already have information. It's hard to learn anything new if you think you already know everything. What I posted can make a valid contribution as we are all learning and no one has all the answers! 

[Hidden in reply to Skarlet]

I agree with everything you've said.  I'm disagreeing with your detractors who you were wrong.  I learn something new and amazing almost everyday.  What I refuse to do is go on a wild goose chase when science has come so far with RLS.  They've autopsied the brains of people claiming to have had RLS during their lifetime and done PET Scans on the living with RLS.  The evidence points to low levels of brain iron and bad dopamine receptors, but plenty of dopamine.  They have visualized this and tested tissue samples.  Dead men don't lie.  There's no point in any of us who are doing research to go back to square one and ignore this evidence.  However if you want to then please keep us posted.

[KellyDBrille in reply to Hidden]

There are many, many, many causes of RLS, and yes, some are related to not only what we eat, but what we don't eat, and how all of that affects the gut. I wish you'd stop saying things like 'because there is no cure', as clearly what works for some people won't work for others -- but that doesn't mean it didn't work for them.

[SLMCP]

That is one of the causes, but I get annoyed with my consultant because he says it is this, yet won't do any tests to confirm.

[Hidden in reply to SLMCP]

Hi SLMCP.  Please see my somewhat recent post titled "some answers."

[Hidden in reply to SLMCP]

Depending on how wild and crazy you are, and whether your insurance will pay for it, ask your consultant to do a test for SIBO - small intestinal bacterial overgrowth.  It is a completely non-invasive test.  You drink a glass of lactulose and then breathe into a baggie every 15 minutes for about an hour and one half.  The critters love that sugar crap and go hog wild and give off hydrogen and methane like crazy.  But those critters should really only be in your large intestine and if they're in your small intestine then within 15 minutes your breath will be full of hydrogen and/or methane and continue to rise.  A certain amount in your breath is acceptable but beyond a certain level and bingo, you have SIBO.  And the theory is that SIBO can trigger or worsen your RLS and getting it under control will give you amazing relief.  And maybe that's why so many people on here have reported a spontaneous remission of all of their RLS symptoms while they were taking antibiotics for an infection.  So it's speculated that SIBO worsens RLS because your body senses infection (rightly so) and large amounts of hepcidin is released and hepcidin sharply curtails iron from entering your blood stream.  Low levels of iron in your bloodstream = bad, very bad RLS.

Or ask your consultant to test your serum hepcidin levels.  I believe at one time testing for hepcidin levels was relegated to scientists and not perfected yet.  I believe now such testing is available when a doctor deems it necessary.  But don't quote me on that.  But no harm in asking. 

[Renee1215]

You might check with a nutritionist or Google elimination diet. Madlegs1 is correct that it's a process involving experimentation and journaling. But the more I learn about the effects of various foods on our bodies, the more I'm convinced that moderating diet is helpful and in some instances curative.

[SuperMNew]

Food can be the culprit, but I would see a doctor to take a food sensitivity test and find out exactly what you are sensitive or allergic to and eliminate those foods.  I did that very thing.  Food allergies can manifest into RLS symptoms.  Once eliminated, the RLS goes away.  Food can be ONE problem.  There doesn't seem to be any one thing that causes RLS for everyone, unfortunately.  Some RLS sufferers respond positively by taking magnesium; some respond by taking both calcium and magnesium together.  Others seem to find relief from Iron.  From my research, it appears that iron deficiencies are overwhelmingly a problem that can cause RLS in most countries.  The best form of iron to take is bis glycinate which is chelated to an amino acid and it's almost impossible to overdose on it.  Currently I am taking over 200 mgs. of Ferrochel (iron bis glycinate), and that seems to work for me totally eliminating the RLS symptoms.  Some people take over 500 mgs. of this iron.  Taking regular ferrous sulfate in those amounts would result in gastric upset and major constipation.  Besides, ferrous sulfate is absorbed very poorly, only about 4% in one study I read. 

I also take Mucuna Pruriens along with the iron and have totally eliminated RLS symptoms.  If I were you, I'd get online and do some serious research into both bis glycinate and iron deficiencies that contribute to RLS.  Also, read about Mucuna Pruriens and how it has been used for hundreds of years in India to control Parkinsons disease.

God bless you, and best of luck.

[Retren]

There are a lot of scams out there which do not work I don,t know of this one How-ever I have always been convinced food has some sort of trigger effect.In fact I was given a chocolate Easter egg and without thinking ate a chunk and had unrelenting RLS for 2days.Also preservatives food coloring ,caffeine the bread with bleached flour. Bagels hot dogs.The list goes on.

[SLMCP]

Hello, from the brief bit I have read they are suggesting salt is the problem.  It's a long book to read, so I will update on here as I read it!