George Lundberg on sugar and RLS

[ChrisColumbus]

Last week Lundberg, who I've only just come across, wrote about RLS, some history of its treatment, and his realisation that too much sugar was a personal trigger - something that some of us have also found. (I'd add too much caffeine, alcohol and artificial sweeteners, particularly aspartame, to my personal list. I know that Eryl has a longer, different, list)

medscape.com/viewarticle/99...

[Joolsg]

Thanks for posting Chris. I read that article as well.If diet is a trigger, and you find the trigger, it's a simple way to stop symptoms.

Sadly, sugar isn't mine. I can eat sugary food and alcohol etc & it doesn't trigger RLS. In fact, after I did 9 months of paleo with zero sugar & extremely low carbs, my RLS improved when I started eating sugar again. The dopamine hit really helped.

Everyone should trial sugar free to see if it's a trigger.

[ChrisColumbus in reply to Joolsg]

Had you been on a DA before you tried the diet?

[Joolsg in reply to ChrisColumbus]

Yes. I had been through withdrawal from Ropinirole in 2016. I persuaded St George's to give me an iron infusion in 2018 and then when 150mg pregabalin and 25mg Oxycontin weren't doing much ( RLS was 38/40) I decided to try diet. I spent 9 months on strict paleo ( grass fed meat, oily fish,leafy green veg, berries, no grains, dairy or legumes) then 3 months on low FODMAPS and about 4 month's on a vegan diet.

No difference whatsoever.

I started drinking coffee ( never touched the stuff before) as others said it helped. It definitely helped during evening attacks.So, after trying every possible drug, every diet, every gadget, I pushed for Buprenorphine after Shumbah posted it had been miraculous.

Like her, it worked overnight for me.

[TheDoDahMan in reply to Joolsg]

Hey, Jools,

Thanks for all your efforts and reporting of the effects.!

[ChrisColumbus in reply to Joolsg]

My suspicion - and it's only a suspicion at this point - is that iron levels, dietary factors, other med interactions, magnesium etc - need to be addressed *BEFORE* getting on DAs. Once one has been on DAs for any length of time possible damage to dopamine receptors may mean that addressing diet etc may make no difference.

PROPOSED:

RULE 1 for anyone new to RLS: do not start taking ANY medications for RLS before addressing iron, diet etc etc (guidance needs to be detailed)

RULE 2: do not start taking DAs for RLS as a first line treatment in any circumstances, and do not take at all for RLS except in exceptional *short-term* instances under expert guidance

[Joolsg in reply to ChrisColumbus]

I absolutely agree.I think dopamine agonists should be banned.

There are SO many people who should have been treated with iron pills/infusions as soon as they developed RLS.

That's why doctors HAVE to learn the basics.

But the RCGPs refuse to respond to RLS-UK. They ignored the 2020 campaign and then refuse to respond to further letters.

[ChrisColumbus in reply to Joolsg]

Firstly, I'd say that it's not just iron that needs to be addressed up front....

And from the little that I know it seems that the majority of UK doctors - and neurologists - won't change on RLS until the NHS, NICE, the RCHP, Uncle Tom Cobley and all change their guidance and embark on a process of education.

And I know how hard RLS-UK - and you in particular - have worked and are working to try to get change and education in the UK, all while at the same time fighting the effects of this and other pernicious conditions.

[Joolsg in reply to ChrisColumbus]

😊

[Bumble34 in reply to Joolsg]

If I was a bit younger I`d be up for some placard waving outside the aforementioned RCGPs,

[Joolsg in reply to Bumble34]

I may still do it!

[ChrisColumbus in reply to Joolsg]

Tube from Paddington, I'm there

[tttlandddd in reply to Joolsg]

Hello Joolsg, about coffee did you take it because of "dopamine" effect? When you say "It definitely helped during evening attacks", do you mean drinking a coffee in the evening to help? Thanks in advance!

[Joolsg in reply to tttlandddd]

Yes, drinking coffee in the evening and late at night.

I always hated instant powder coffee. But I was desperate and tried all the pills,devices, suggestions on here when I was struggling after stopping Ropinirole.Coffee helped reduce the severity and frequency of attacks. I now drink at least 6 cups of coffee a day, some caffeinated, some decaffeinated.

I hated the taste for the first few months, so certainly didn't get any dopamine pleasure hit from it.

I now like the taste and find tea bland.

Very strange.

[tttlandddd in reply to Joolsg]

Coffee is known to increase dopamine levels, no that strange since RLS can be because of low dopamine level (but lot of articles says that coffee and RLS are not friends because of nervousness)

[Joolsg in reply to tttlandddd]

Excellent. That's clearly why it helped when pregabalin and Oxycontin didn't cover my RLS.It's also been linked to improving MS symptoms, so that's another positive.

I now prefer the taste to tea, which is extraordinary!

[tttlandddd in reply to Joolsg]

Did you increased pregabalin several times before stopping it?

[SueJohnson in reply to tttlandddd]

Coffee is strange in that it helps some and makes RLS worse for some.

[BoldMove in reply to Joolsg]

I have to wonder. I was a coffee drinker, then came both GERD and full blown Celiac I could not drink coffee any more...then came RLS. If there is something to the connection, it won't help me, there is no GF coffee, none that's certified anyway.

[Joolsg in reply to BoldMove]

I followed a GF diet from 1994 to 2009. I've never heard of gluten in coffee. My best friend us coeliac and drinks coffee. Unless there has been cross contamination in some way, coffee is gluten free. At least here in Europe and the UK it is.

[ChrisColumbus in reply to Joolsg]

And for BoldMove . I don't drink coffee (or tea, herbal tea, horlicks, ovaltine, milk) - not for dietary reasons but just because I don't like them. Anyway, see the following - coffee is gluten free but....:

glutenfreesociety.org/is-co...

[BoldMove in reply to ChrisColumbus]

Interesting video if not a bit depressing. I have GERD so I won't be going back to coffee. I'm quite satisfied with certified organic green tea. I did send it on to my husband who will probably blow if off, but I may be able to encourage him to go organic in his coffee since we are organic in most everything else.

[ChrisColumbus in reply to BoldMove]

I also read a Coeliac support site which talked about problems with coffee generally because of caffeine intolerance (even of the tiny amounts in decaffeinated coffee). Of course, cross contamination during manufacture IS potentially possible too...

[BoldMove in reply to Joolsg]

Coffee is naturally GF, but with the caveat that unless certified it is not guaranteed to be GF because many manufacturers use dual packaging plants. As an example, we know that oregano contains no gluten but unless certified GF I can't buy it because I can't be sure what else was processed there.

I had a brand of GF coffee years ago, but for some reason it lost its certification and vanished from the market. But since then, I developed GERD and can't drink coffee anyway.

I have a gastro who has Celiac as one of his areas of expertise. He is doing an endoscopy on me on the 30th to be sure I am as compliant as I think I am. If not, I will have to review every product in the house, but I have nothing but acid reflux which could be a symptom of anything else.

[ChrisColumbus in reply to Joolsg]

The Lundberg solution made it into 'The Sun' today - so clearly it's big news!

thesun.co.uk/health/2541799...

[ChrisColumbus in reply to ChrisColumbus]

Joolsg

And the Mail (online at least):

dailymail.co.uk/health/arti...

What's that they say: "No such thing as bad publicity"?

[Jumpey]

Thanks for posting. Sadly sugar isn't a trigger for me.

[ChrisColumbus in reply to Jumpey]

As per my query and following up to Joolsg - were you ever on dopamine agonists?

[Jumpey in reply to ChrisColumbus]

Never.

[ChrisColumbus in reply to Jumpey]

Ah, well we know that nothing is universal in either the triggers or the efficacy of treatment for RLS.

What have you found to be effective for treating RLS?

[Jumpey in reply to ChrisColumbus]

Ensuring my iron levels are good and opioids. I'm currently taking morphine.

[SueJohnson in reply to Jumpey]

Hey be glad. That way you can still enjoy sugar 😀

[Jumpey in reply to SueJohnson]

Definitely! Nice bit if cake! Yum.

[Eryl]

Yes, I stay away from all, even the most minimally processed food though I don't find caffiene particularly problematic given that I don't use sweeteners and use goats milk because I'm intolrnt of cows milk (it's the A1 casein).

[Eryl in reply to Eryl]

I musn't forget to mention that starches are just long chains of glucose (blood sugar) molecules so if you wnt to lower blood sugar levels you also need to lower starch intake especially refined (processed) starch sources like bread and other flour based foods especially wheat as the high gluten levels speed up its metabolisation as well as one of it's metabolites giadin is highly inflammatory.

[Bumble34]

Alcohol, Caffeine or Sugar makes not the slightest difference to my RLS/PLMD and yes I was on Ropinirole for 20 Months approx. max dose .75mg. No simple answer, and don`t we all wish there was.

[707twitcher]

I was on pramipexole for 12 years. While on it, the only dietary trigger for me was salt. Now that I'm on buprenorphine, salt is no longer a trigger. But almost anything eaten within 2 hours of taking the buprenorphine causes mild symptoms.

[RLSLearner]

Agreed sugar is frequently bad. But the common mistake - "Hey this worked for me - it is the cure for everyone!"