Sucralose - now (fairly) sure it is c... - Restless Legs Syn...

Restless Legs Syndrome

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Sucralose - now (fairly) sure it is causing RLS

Chancery profile image

Hi, some time ago I posted on here asking if anyone had experienced RLS with Sucralose. No-one else seemed to have a problem with it, and at the time I thought it was antihistamines that were causing my issues, but I am now pretty sure it is Sucralose after all.

Sucralose (Splenda) is my artificial sweetener of choice because it has no bitterness and you can cook with it as it isn't denatured by heat, but recently I've been unwillingly eating more of it as it seems to be replacing Aspartame in drinks. This seems to be related to the Sugar tax, with more drinks' manufacturers putting Sucralose into drinks where other sweeteners were in use before.

I've had a bad UTI that wasn't responding to antibiotics so I've been drinking cranberry juice and even the full sugar variety has Sucralose added. Subsequently every single night for weeks now I have had RLS and had to take an iron tablet. I'm lucky that iron works for me, but it's a major pain that Sucralose is finding its way into everything.

Anyone else suspect Sucralose as an issue? I can't help feeling a lot of people are probably having this problem and are completely unaware of just how much of this is turning up as a booster sweetener in things.

I've read on here that some people have a problem with Aspartame but I do wonder if Sucralose is the same but two and two hasn't been put together yet, or perhaps more importantly, whether all artificial sweeteners are doing something neurologically that is causing RLS issues. I'd be most interested to hear from anyone who has read/heard anything about this or knows why art' sweeteners are such a disruptive substance. I saw a book years ago that claimed art' sweeteners were neurologically destructive and I thought the guy was a crackpot of the 'your fillings are killing you' ilk, but now I wonder...……...

34 Replies

I'd be inclined to agree with you. We've always said artificial sweeteners are suspect-- without a shred of peer reviewed Cochrane based research to back it up. But- hey, what's a little bit of bad science got to do with anything?🤗

Seriously- everyone seems to have their own individual pallette of rls symptoms and reliefs.

So, it's very much a question of finding what works for you.

It's good that you have discovered this little bit- and freaky that it's taking over the whole food industry.

Good luck with your quest.

I've noticed it for sure

I've found that sugar, sweetened foods and very high carbohydrate meals gives me rls. I think you need to wean yourself off the taste of sugar, not just look for another sugar substitute. Sugar has no nutritional value, so your body will hapilly function without it. If you think you'll run out of energy without it, you won't. I cycled sixty miles a few days ago, and only ate a snack of baked beans on toast. If you find food bland without sugar, experiment with herbs and spices.

texdeb6989 profile image
texdeb6989 in reply to Eryl

Hi Earl: my husband has rls and we have noticed an uptick when he eats sweets. Since you have given up sugar, did your rls stop?

Eryl profile image
Eryl in reply to texdeb6989

It hasn't stopped, but is a rare occurrence these days. In my legs, I only get very mild symptoms about half an hour after a carbohydrate rich meal, and It only lasts a few minutes. Sometimes in my hands when I've just gone to bed, but I guess that's because the blood which collects in the leg tissues due to gravitational effects, is reducing, and flowing into my arms.

Chancery profile image
Chancery in reply to Eryl

Thanks, Eryl, but I'm ahead of you. I've been off sugar for about month now, maybe longer. I have done it before, an embarrassing amount of times, but I have finally, in my dotage, admitted that it is an addictive substance for me so have sworn off it permanently. It was both idiotic and wearing to keep repeating the same pattern over and over (binge - deprive) while my health went down the toilet.

I only use artificial sweeteners to sweeten fruit, primarily rhubarb, a good low carb fruit and I love it made with fresh ginger, but you really do have to sweeten it. I've always used sucralose, but like I say, I'm pretty sure it is definitely a culprit. I'm just in the process of giving up eating fruit completely, not because I believe it's unhealthy, but because I want to be absolutely sugar-free to see the effects of zero sugar on my cravings/gut health/health in general. When I was ill with gallstones, in hospital in Aberdeen, they had an unusually stringent (and very good) diet for hospital meals. They did offer sugar, at the main meal only (jelly, ice cream, tinned fruit and rice pudding - all lower sugar plainer options), but I never ate them because I was on a zero fat diet. Subsequently I ate practically no sugar, not even fruit because they only gave you one piece of fruit a day. I found it incredibly restful and my cravings died right away so I am going to recreate that. But I do believe that artificial sweeteners are not a great idea - I'm finding them more and more suspect, for lots of reasons, as time goes by.

Chancery profile image
Chancery in reply to Eryl

Sorry, forgot to say - exceptionally interesting that you find sugar and high carb also aggravates your RLS. I've never heard that before, but it really doesn't surprise me. I know that chocolate aggravates my RLS, but I've always assumed it was the caffeine (and maybe the theobromine) but interestingly, coffee, which I VERY seldom drink, doesn't do it and yet it must have way more caffeine. So possibly it's that sugar after all, or the combo of all 3.

Someone posted on here some time ago that they found that having a cup of coffee when they were awake in the night actually helped to settle the legs. I have tried it a few times and found it helpful but I usually take some form of medication at the same time so it’s not certain it’s the coffee.

Isn’t there something about caffeine working on the adenosine receptors. There is a link between adenosine and rls.

Incidentally I believe that articial sweeteners can affect my rls - I’m not sure about sucralose specifically.

Sorry it's taken me so long to reply to you, Dancer. I hadn't heard about the Adenosine thing; I don't even know what it is! So thanks for that - going to check it out...

P.S. Very unusual about the coffee helping - might try that some night when I'm desperate!

Looking through an old post....I’m one of those people who finds that a cup of caffeinated coffee settles my legs!! I take a flask to bed, but am thinking of trialling ProPlus caffeine tablets for when I can’t use a flask.

Caffeine has never stopped me sleeping or made my legs worse.I’m grateful for finding this tip on the forum!

That is VERY interesting, Lapserunner. I'd forgotten that tip was on here. Caffeine definitely keeps me awake, even decaff, or the amount in Chocolate. But I might try a decaff some night when I'm struggling and see if it works!

It seems to be the caffeine that works, so don’t think decaff will be any different to water!!

The other oddity that I heard of but didn’t try was chewing nicotine gum!

Decaff still has caffeine in it, just a (variably, depending on brand) smaller amount. For someone like me, super-caffeine-sensitive, it's still enough to keep me awake at night, albeit nothing like the 'full fat' version! So if it's the caffeine in coffee I should still feel the difference with decaff, even if it's just a reduction in the old twitchy legs.

ETA - And nicotine gum, that's an odd one, but interestingly, another addictive substance. I wonder if that tells us something???

Hi Chancery,

Everyone used to think that artificial sweeteners (aspartame and sucralose etc) passed through our digestive tract without much effect.

Some of the latest research though has found that sucralose has a negative effect on our bacteria in our digestive system .. and this can set us up for weight gain and metabolic syndrome.. it’s also been shown to increase fat droplets in fat stem cells. It’s also been linked to dementia and also leukemia. Definitely something to avoid in any case!

MSG acts as an excitoxin .. which can have a negative effect on nerve cells.

I don’t eat any of these (artificial sweeteners or MSG) but notice my RLS gets a lot worse with any sugar ., including the sugar in wine or champagne! And dairy products I think are linked in my case too. Milk etc has high amounts of milk sugar. (Lactose).

I wonder if there is a link between high blood sugar or high insulin levels and RLS?

Chancery profile image
Chancery in reply to Ureshi17

Hi Ureshi, yes, I've heard that artificial sweeteners can disrupt the gut microbiome. I have looked at some of the papers on this when it first emerged and it did look quite compelling. I hadn't head though that it increases fat droplets in fat stem cells - I don't suppose you know what effect that might have on the body? And I was very interested to see you also find that sugar effects your RLS. I think I might put a post up on this and see how common the experience is.

ETA: Forgot to say, it's very interesting that they may be implicated in dementia because sugar is very highly implicated in Alzheimer's, with some researchers referring to it as diabetes Type 3. Surely not a coincidence?

Hello Chancery,

Here is a link to some information on the sucralose fat stem cell study;

It could lead to weight gain, potentially metabolic syndrome, diabetes and increase heart disease risk.

RLS is more prevalent in people with diabetes. I’m just not sure actually what the mechanism is.

Sugar / alcohol aggravating RLS seems to be quite common.

Yes, some complelling research coming out now that links high blood sugar levels to faster cognitive decline.

Sugar has an impact on dopamine .. I wonder it has some effect or impact on the dopamine receptors .. and in doing so aggravates RLS?

Chancery profile image
Chancery in reply to Ureshi17

Absolutely fascinating research - thanks for that. And yes, the whole sugar/dopamine issue is a nest of snakes. I know from many years of addictive binge-eating that sugar was my most reliable go-to food to lift mood, and it's exceedingly common for alcoholics, in particular, but addicts in general to adopt sugar when they give up their addictions. Both alcoholics and drug addicts often have very bad teeth as if to prove it!

But I think sugar is a vicious overlord, in that yes, it helps boost dopamine in a very short-lived way, but then it causes it not only to crash but possibly damages the mechanism in the same way as it damages the body's insulin mechanism, hence diabetes. Unfortunately, restless leg syndrome doesn't seem to get the research that other conditions do - assumably because it's not life-threatening, and no-one seems to have thought it might be part of Syndrome X, i.e. metabolic syndrome, caused, at least in very viable theory, by carbohydrate issues. Maybe 50 years from now it will be lumped in with gallstones, high blood pressure, CVD, diabetes and all the other carbohydrate-related problems.

Yes! So true. I think partly the name “restless leg syndrome” makes it seems like it’s not a serious condition ... I know they were going to officially change it to Willis Ekbom Disease...

An American professor (Dr Robert Lustig) has written a wonderful book an sugar, addiction and dopamine. You can listen to his lecture online. I’ll send a link in a separate message. He takes about overstimulating dopamine . Which can lead to cell death.

It’s fascinating!

Here it is:

Listen to the part on dopamine .. after he explains the difference between happiness and pleasure.

Chancery profile image
Chancery in reply to Ureshi17

Very many thanks for this, Ureshi. I know Lustig's work and really enjoyed his book on sugar, but I had no idea he had a new book out so I was thrilled to discover that. It is now on order with my library!

I find it very interesting that he talks about how the American public (and by implication us here in the UK and Westernised Europe) have been hijacked into believing pleasure is the same thing as happiness by commercial interests. I had already been turned onto this idea by Phillip Seymour Hoffman, of all people, (who suffered terribly from addictions which, in the bitterest of ironies, killed him in the end) in an interview where he said it was easy to kill yourself with pleasure and that chasing pleasure often ended up making you more unhappy. I had never realised that before and I felt it very much applied to my own life - I found it one of the contributing ideas that led to me finally acknowledging my problems and letting go of self-destructive behaviours.

I do a journal and I write a LOT (sometimes literally whole journals) about the 'normalisation' of very not-normal foods. I do things like collect adverts where they are selling junk food with the word "love" in the copy (you'd be amazed - or maybe not! - at how many of them there are) and all the ads that promote sugary treats as part of being loved and/or connecting or being part of a happy family. My own family had no idea how to nurture so I formed a strong connection with things and, later, food because it offered an approximation of happiness. It's taken a LONG time to undo that and, like addiction, I don't believe it will ever really go away.

It sounds hyperbolic, but I don't think you can exaggerate the human misery that the food industry has created, and is creating still, through selling the idea of (sweet) food = happiness and fulfillment. They should be ashamed of themselves, but, of course, there is no real 'them' to be ashamed, just huge corporate interests. That's why you will never get them to change their ways through conscience, a shareholder-driven industry can't have a conscience. That's why it's up to governments to legislate - and I don't mean a sugar tax - but very clear-cut banning of things like claiming "healthy" or "natural" for products with sugar in them, for example. If they were forced to tell the ACTUAL truth about their synthetic foods then things like sugar tax would be utterly redundant.

Chancery, I began adding Hawaiian Punch flavor drops to my bottled water a few summers ago and gradually developed an odd and unpleasant sensation in my hand. A tingling feeling and a need to stretch it out that never seemed to reduce the symptom. It progressed to my legs and at night I had to continually move them to avoid the very unpleasant inability to relax them. The possible causality of the flavor drops never entered my mind.

Summer ended, I discontinued the flavor drops because it wasn't as hot and my symptoms completely disappeared. Obviously the likely cause was the Sucralose (Splenda) in the flavor drops.

I tested the drops a few weeks later and those same unpleasant symptoms reappeared confirming my suspicion.

It's been two years now and I'm still symptom free. I looked for others with similar complaints but found few. Possibly they just haven't been able to isolate the cause because it's such a common ingredient. The other possibility is that we are more susceptible to this chemical.

I just answered you on your other comment, Jerry. I've had no luck yet in pinpointing what foods, if any, make my RLS worse, or bring it on. Someday I might hit it lucky!

Yes indeed, I've just discovered the connection myself. For YEARS I've had RLS and have been taking Ropinirole so that I can go to sleep but that doesn't help when I'm trying to relax and watch television or read in the evenings. Every night my legs start feeling like they have to move, tighten, untighten, and I try to ignore it but it's impossible. I recently decided to stop putting Splenda in my morning coffee, and by the way, that is the ONLY time I used it - one packet with one cup of morning coffee. Once in awhile, I'd have ice tea at lunch and use one more packet at that time. Anyway, after a few days of no Splenda at all, I realized that I had not had any restless legs in the evenings. Is this just a coincidence? Hmmm. Several more days have gone by now and my legs have been very quiet. I had previously thought it was sugar or carbohydrates eaten in the evening with dinner that caused it but couldn't prove it because sometimes it was far worse than other times. I'd get restless legs when I'd be on a plane too, so I was skipping eating any food at all while traveling, fearing that I'd get restless legs, trapped in the little seats on the plane but guess what... I'd have coffee, drop in a Splenda, then an hour into the flight, here come the legs. Now this Ropinirole I take is an anti-seizure medication! I couldn't sleep at all without it because the legs wouldn't stop. But I'm going to see how this goes and see if I can get to sleep without taking it; wouldn't that be a great thing, since I don't HAVE seizures. I'm in complete agreement with you. It isn't sugar or carbs or normal food at all that cause my RLS; I seriously believe that for me, Splenda and whatever it contains to sweeten food, is the cause.

Chancery profile image
Chancery in reply to Yvo14

Hi Yvo, yes, Sucralose is definitely an issue. I'm beginning to think pre-prepared food & ready-meals are an issue full stop. The problem is they put so many chemicals and processed 'foods' in them you could quite literally be eating anything. Sometimes these frankenfoods have got 35 ingredients in them, none of which we were designed to eat!

I believe mine is made worse by Splenda also. I am testing it out this week but my worst bouts came after drinking something with Splenda in it at night

Chancery profile image
Chancery in reply to Casscass1

Yes, it is definitely a trigger for me. I've done eliminations and nailed the little bugger. Unfortunately it's become the sweetener du jour in nearly everything nowadays. The sugar tax made the situation much worse. Which does make you wonder how healthy artificially sweetened drinks can really be if they trigger RLS in susceptible people. All that said, I do still drink drinks with sucralose in them. I just restrict them to one small glass, not more than once a day. I never have them if I have to be up early or I'm having trouble sleeping. Like caffeine, it's just not worth it for the 'twitches'!

Casscass1 profile image
Casscass1 in reply to Chancery

Thanks so much for the reply. It is nice to know people on here are helping others out! I am too scared to try it this week b/c I had a really bad night the other night but I did eliminate it yesterday and slept well. I am on Neupro patch but I think the Splenda triggers it regardless.

Chancery profile image
Chancery in reply to Casscass1

Yes, it's definitely both cumulative and quantity dependent. If I were to drink a McDonald's size drink, for example, I'd be doing Irish dancing for an hour or longer. My small glass, maybe ten minutes on the sofa late at night and another ten/fifteen in bed. If I was to eat something artificially sweetened, like yogurt, and drink a soft drink too, I'd be up out of bed, taking iron, bottom half of my legs burning and about weeping with frustration! So you can help yourself simply by learning your limits.

I have stopped sucralose - I barely ever had anything that contained it anyway. I am wondering if other sweeteners cause RLS as well or just sucralose?

Chancery profile image
Chancery in reply to Casscass1

I think you'll find others on here naming Aspartame, and others just saying all artificial sweeteners, but I wonder how much of that is fear-mongering or fashion. One of the difficulties is separating them to try them out; often manufacturers put a bunch of them together. I can certainly use saccharin without any bother, and stevia, but I hate stevia! I've only just discovered alcohol triggers mine too. I don't drink so it was just chance I found out. Tiny thimble-full of gin and my legs were well lively in bed. Of course it was one of these posh fruit ones and they're sweetened so might have been good old sucralose again!

I just discovered the relation of splenda and my rls. I’ve eliminated it from my diet as well as white breads and pasta. Reduced the need for meds by half.

Chancery profile image
Chancery in reply to Mikectool

That's good news, Mike. I only recently discovered mine was also related to quantity of sugar, as in if I have a lot of it (too much!) in a day my legs will be going later in the evening. I'd seen sugar cited a few times on here and not paid any attention, thinking they were probably mistaking chocolate (a definite RLS irritant) for sugar, but no, they were right. Too much sugar, no chocolate in sight, and my legs will be off.

Hello. I am new on this site. I was struggling with a sudden attack of RLS tonight and checked all the foods I had eaten. The only different item was a sugar free ice cream sweetened with Sucralose etc. I remember that certain drinks also caused it and they were sweetened with sucralose as well Another thing to avoid! I am allergic to all cane sugars so that is discouraging!

I realize now that my best few months in the past have been on Keto diet. When I stick to it I experience much fewer symptoms Don’t really want to be full keto so will start experimenting...

I looked up a possible connection on Google and this site came up first! Very grateful to see that you are all out there.( though sorry you have RLS) Thank you!

Chancery profile image
Chancery in reply to serengazer

Oh yeah, Sucralose is a BIG trigger for me. Way more than any other artificial sweetener. Interesting that you are doing the keto diet. I've been doing low carb, heading towards keto, but while I've been feeling a LOT better, health-wise, I'm not sure how much it has helped my RLS. I've recently (last 3 days) had terrible problems with it. I suspect it's an antibiotic that's triggering it. I was just going to do a post on it tonight, so you got me here for that - thanks!

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