RLS worse at night when hungry - Restless Legs Syn...

Restless Legs Syndrome

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RLS worse at night when hungry

passgo profile image
29 Replies

Hi everyone,

I'm trying to lose weight (to bring me into the healthy BMI range), so I can improve my RLS*, but whenever I go to bed even slightly hungry, my legs are worse. Any idea why this might be? Is RLS exacerbated by low sugar levels? Typically, if I get up and have something quick to eat (spoonful of honey, say), then I am able to go to sleep (I'm on Gabapentin).

Thanks for your help.

*I've noticed that my RLS is more manageable when I am a healthy weight, but I find this difficult to achieve as a few bad nights leads to eating to give me the energy that I otherwise would have had from sleep. Next thing I know, months have past and my weight has gone up and my legs are terrible.

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passgo profile image
passgo
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29 Replies
Madlegs1 profile image
Madlegs1

I agree with the hunger at night. I often have to get up to eat something.I find that a tangerine/ mandarin helps a lot. It is not too fattening, is sweet and fibre full.

I have a fast metabolism-- and need to eat constantly. I have minimal excess fat.

A banana is also good.

Hope you get some relief.

passgo profile image
passgo in reply to Madlegs1

"A banana is also good." I'll give it a go, thanks.

ziggypiggy profile image
ziggypiggy

I think nighttime snacking is common among RLS sufferers. It acts as a distraction and and can help as a reset to try to sleep again. If that was something you were used to doing but are now cutting out, I could see how it could possibly agitate or initiate symptoms based on this coping mechanism that may have helped in the past.

This is how I would see it playing out in my situation if I were to cut out snacking as a distraction. Just knowing it was not available would only increase my focus on how my RLS is doing. And that's never a good road to go down when trying to sleep.

Successfull coping mechanisms, even those that may in reality just be a placebo type action are very powerful and difficult to replace or shake.

Good luck. Its definitely that time of year where alot of us evaluate our weight and health.

passgo profile image
passgo in reply to ziggypiggy

Hi ziggypiggy

Never been a night-time snacker (thankfully). But I've always had weird sugar levels (even when stick-think as a child), so perhaps there is a link for me.

I'll monitor the situation.

Thanks :)

Munroist profile image
Munroist in reply to ziggypiggy

This is me as well. A small snack distracts from the RLS and I wonder whether there’s a little dopamine spike from the pleasurable experience which eases things enough to get back to sleep. I don’t have an obvious problem with sugars or glutamate so a bit of yogurt and honey is nice. However I find it better to eat early before 7pm otherwise I’m more restless.

Butterflysun1 profile image
Butterflysun1

When I was taking Pregabalin, which is similar to Gabapentin, it used to make me feel suddenly very hungry - shaky & feeling hypo & sweaty so I couldn’t function well & had a strong craving for food at the time so it became a vicious circle. I thought this contributed to the weight gain. I used to have to carry food with me - banana or biscuit as was really difficult to carry on doing what I was doing till it wore off.

passgo profile image
passgo in reply to Butterflysun1

That IS interesting! I also experience this sudden crash feeling (typically 20 hours after my last dose). I've already started the process of coming off Gabapentin (gradually), as it's making me feel like I'm viewing the world with a slight delay and making it difficult for me to get my words out. Thanks for your comment.

Eryl profile image
Eryl

The problem with sugar is that it messes with you hunger hormones so that you get stronger hunger pangs after you've eaten sugar. High blood sugar also causes inflammation which is often the cause of rls. High blood sugar causes the liver to turn it into glycogen which is stored in the muscles and liver but when those stores are full the liver then turns glycogen into trigycerides which are the building blocks of bodily fat. Sugar is the culprit in all your problems and by eating sweet snacks although you think that you're curing the immediate problem of hunger you're just kicking it down the road and making things worse.

Butterflysun1 profile image
Butterflysun1 in reply to Eryl

Sugar definitely does something to hunger hormones, yes, as you describe, but when I took Pregabalin there was another layer/urgency to it which is not there without Pregabalin. I think it definitely contributed to weight gain.I think it’s worth reporting these things ( which are kind of embarrassing as you are so intensely hungry & will grab anything ) as it may add to knowledge when others then say ‘me too’

My husband would quietly bring something when we were out on a walk as I would suddenly have to stop & become briefly unable to keep going. Doesn’t happen normally

ziggypiggy profile image
ziggypiggy in reply to Butterflysun1

I'm on keto and eat near zero carbs. I haven't noticed any change in RLS on this diet verses a higher sugar diet. RLS symptoms are similar. Seems to help with depression a bit more though so that's why I continue.

DicCarlson profile image
DicCarlson

There is some evidence that a keto diet (very low carbohydrates) and paleo (moderately low carbohydrates) will help with RLS. Keto is also a marquee diet plan for losing weight. So, you might want to substitute that tangerine for a piece of cheese or some nuts as a snack. More info...

ruled.me/

marksdailyapple.com/

restlessstoz profile image
restlessstoz in reply to DicCarlson

A quick note here DicCarlson, I find that cheese can be a real trigger due to the glutamate in it. If I eat cheese at all it aggravates my legs, similarly other high glutamate foods. RLS sufferers have been found to have already high glutamate levels in their brains so for some, eating cheese will only aggravate the condition. :) This syndrome is a minefield to negotiate!

wantokporo profile image
wantokporo in reply to restlessstoz

For what it is worth, Parmesan is very high in glutamate, as are all aged cheeses. The good news is that goat cheese (not goat brie) and mozzarella, monterey jack, some cheddars have much lower glutamate (I find I can eat all of them and there are some good goat cheeses, for my taste anyway), but it could be that someone could have a problem with all cheeses as we are all different.

restlessstoz profile image
restlessstoz in reply to wantokporo

Yes, I am a great cheese lover and have to avoid them which is so sad! Even the soft cheeses, although I can get away with eating them for one day, but not for two or three, I seem to go over a threshold that then means my legs go mad. I've tried goats cheese and it seems a very strong taste, but maybe I'll have to try more varieties. Thanks for the information. :)

wantokporo profile image
wantokporo in reply to restlessstoz

Another thing that works for me is eating things like low glutamate cheeses for breakfast or lunch, not dinner. I have to be very strict about what I eat for dinner.

I used to think that going to bed slightly hungry was good for my RLS but in the last year or so I have started eating more in the evening - after I go to bed. It feels very unhealthy (particularly for my teeth) but I do wonder if it helps my RLS. If symptoms come on I often find they abate if I get up and get something to eat. Definitely a cup of decaffeinated coffee helps also. I wonder if it is the activation of the vagus nerve by the chewing action that helps?

Well done for your intention to lose weight - it's good for general health and, depending on body image, for a sense of well-being also. However, I'm not sure that there is any established correlation between weight and RLS. I lost 2 stone about 3 or 4 years ago and am now a healthy slender but sadly I did not find that losing weight helped my RLS at all.

Memmy profile image
Memmy in reply to involuntarydancer

Me too. A cup of coffee and a snack really helps

Goldy700 profile image
Goldy700

I find that if I get hungry at night it is best for me to eat easy to digest foods such as some stewed or raw apple, carrot, steamed veg etc and avoid protein, fats, heavy foods. If I consume the heavy foods I am uncomfortable and get more RLS.

wantokporo profile image
wantokporo in reply to Goldy700

I find when I get up at night to eat that it may be just the bit of walking around and not so much the food (I usually have a bowl of cereal) that helps. But who knows. If it really bad, hot hot (as hot as I can tolerate) water on my lower legs usually takes care of it too.

Muso-man profile image
Muso-man

I am on gabapentin and have found it helps. Getting up at night is classic. I have found that instead of eating watching the rolling news takes my mind off thoughts of eating and rls and 15/20 mins ready to go back to sleep.

gingerf21 profile image
gingerf21

I have also been trying to lose weight. I've been doing the Keto way of eating since last August (2021), and have lost 30 pounds without feeling deprived. The first few weeks were rough however, getting used to giving up sugar and carbs. I've been trying to switch my Ropinirole to Gabapentin, (since November 2021), but found that I can't totally give up on the Ropinirole, since Gabapentin doesn't seem to work totally. I take 200 mg of Gabapentin and .25 Ropinirole at night, which seems to be the sweet spot for me. The Gabapentin makes me very sleepy, and for once I seem to be able to sleep through the night. The next day however, I have a lot less energy and lose words frequently. Not quite sure how to proceed, but I've found that if I take it one day at a time, I manage adequately.

passgo profile image
passgo in reply to gingerf21

Excellent news on the weight loss! I've tried keto three times, but it seems to make my legs worse. Not sure why. There'll be a reason, of course, but it's beyond me at the moment.

"lose words frequently" - I also have this. It's annoying.

Guitarpickin profile image
Guitarpickin

Congratulations on the decision to try to get healthier! I think changing your diet and eating pattern may be “stressful” in that it is different, and that may make the RLS worse, temporarily. If possible, try to stick with it to give your mind/body a bit of time to adjust. When I was first figuring out RLS (after it had finally gotten so bad I wasn’t sleeping and had full body movements), the GP I saw and the neurologist both independently recommended intermittent fasting. The kind they recommended was only eating 500 calories (or less) on 2 non-consecutive days a week. Something about a full day of limited or zero calories is supposedly good for our bodies (to include the neurological system). When I first started the “diet” (which I absolutely love now!!) my legs were so much worse on the days I didn’t eat. I could figure out why. This went on for a few months. Then it mostly normalized and the low calorie days were about the same as any other. Eventually I read another person’s post on this support group who recommended taking ferrous bisglycinate iron AT NIGHT, every other day on an empty stomach with a bit of vitamin C. So I moved my iron ingestion to bedtime on my low calorie days. Suddenly my 500 calorie days were the days I got the best sleep!!!

Obviously eating at night is terrible if you are trying to manage your weight. In my experience, much of hunger is habit and psychological. If you can suffer through the nighttime hunger for a few weeks, you may be able to retrain your stomach. When I first tried having only 500 calories in a day I felt very hungry and could only think of food. In those instances a cup of tea or a can of carbonated water was very helpful in curbing the hunger. My parter was just diagnosed with diabetes and he is now doing the same intermittent fasting (for men the level is 600 calories). In addition to the fasting, he started walking 3 miles a day and has lost 12 lbs (nearly a stone) in the last 2 months! If you have to eat at night, maybe go for two or three raw nuts and a glass of water. Something that won’t be quickly converted to glucose when you sleep.

You’ll figure it out and find something that works for you. Breaking habits is difficult, just don’t give up! Good luck! I’m rooting for you!

passgo profile image
passgo in reply to Guitarpickin

"ferrous bisglycinate iron AT NIGHT"

I started doing this (on the recommendation of someone in the group) a couple of nights ago. Perhaps it'll take a while to improve my levels before I see improvement, but I am hopeful.

"In my experience, much of hunger is habit and psychological."

Absolutely. But for me it's not an issue. I'm not bothered about feeling hungry for a while. But I did notice that if I ate something small, then my legs improved enough to sleep. Typically I only do this if I've been restless and hungry for a couple of hours. It's not something I turn to if I feel restless unless I've experienced hunger (that doesn't pass) for a while.

"he started walking 3 miles a day and has lost 12 lbs"

Excellent news. I have an elliptical machine and have just started walking on that. Again, probably it takes time to see benefit, but I will - of course - continue.

"If you have to eat at night, maybe go for two or three raw nuts and a glass of water."

I'll try the nuts. Interestingly (perhaps) if I consume a lot of water when my legs are bad, they improve noticeably. Of course, then I need to get up a lot in the night, but at least I am sleeping between trips to the loo!

"Good luck! I’m rooting for you!"

Much appreciated! 😀

in reply to Guitarpickin

Hi Guitarpickin, I find that I need to take the iron every night in order to get relief from RLS. I think it’s important to distinguish between those that are helped immediately by iron and those that are helped after months of iron intake (or getting an infusion) and raising their ferritin to extremely high levels. You got immediate relief - “So I moved my iron ingestion to bedtime on my low calorie days. Suddenly my 500 calorie days were the days I got the best sleep!!!”I think the great sleep you had that night had less to do with your fast and more to do with the iron you took that night. So any night you’re having a hard time with the RLS I would reach for the iron, even if it means taking it two nights in a row.

Numerous people on here have found that eating at night triggers their RLS. And as you point out, fasting is good for RLS…. and our lousy dopamine receptors. So what some people do is a long nightly fast from around 7pm until breakfast - night after night after night. By doing this they don’t trigger their RLS in the short run and may even be up-regulating their receptors in the long run.

Despite what is a clear beneficial and immediate effect from the ferrous bisglycinate, most people on here insist that it is impossible to get immediate relief and will only advice people to take iron to get their ferritin over 200 at which point some benefit might be realized. I consider this to be misinformation and those that are giving this advice and failing to mention the potential for immediate relief are doing a disservice to new members who might get relief from their suffering by taking iron nightly, or whenever their RLS is bothering them. Admittedly, it does not seem to have immediate benefit for those that have augmented on the DAs. However, everyone should give it a shot unless they have iron overload.

Guitarpickin profile image
Guitarpickin in reply to

I agree! If what I wrote seemed to imply my good night of sleep had anything to do with fasting, it was a mistake and poorly worded. The only thing that changed was the time of day when I took the iron so I fully attribute it to taking iron on an empty stomach at night. Also, the iron hasn’t been 100% reliable but I only do it twice a week and it is consistent enough that in my opinion there is a clear correlation. Like you said, unless people have problems with iron, there’s no reason not to try taking it. And taking it at night seems to give the best potential for immediate relief. I’m glad to hear it works for you when you take it every night! That’s great! And I hope the relief continues!

in reply to Guitarpickin

Have you ever tried taking the iron on a bad RLS night like you would an aspirin for a headache. It should relieve the RLS in about an hour.

Guitarpickin profile image
Guitarpickin in reply to

Luckily, thanks to daily exercise, my meds (5 mg indica THC and 100 mg gabapentin), and a nightly stretching regimen before bed, I don’t really have any bad nights these days…but if I get brave (and feel up for enduring a potentially crappy night) I would love to skip the THC and gabapentin and just try the iron and stretching. I’ve read many of your posts but I can’t remember the medicines you take, if any. But I know you seem pretty happy with not eating after 7 pm and the nightly iron. Is that your full treatment? By the way, I agree that people who say both iron and/or gabapentin can’t provide immediate relief and *must* be taken for an extended period of time before seeing a benefit are potentially misleadimg folks, however inadvertent. What they are saying is probably true as a generalization, but there are plenty of people who have had a different, more immediate experience with iron and gabapentin. I agree with you-definitely worth a try!

in reply to Guitarpickin

Yes, iron is it. RLS is the most fascinating and complicated and evil of my various conditions, and as a result of the iron, one of the least intrusive among them. I read about “the iron at night thing” what seems like a life time ago on a community chat similar to this one. As Jools said “gotta pay it forward.” Life as I know it would not exist, but for that tip.

Set an “intention” for 2022 and see if by the end of the year you are just an iron junkie like me. With that said, I believe the ultimate RLS protocol is via honoring Mother Nature and the circadian rhythm. By doing this I would expect a more ancestral type gut microbiome. Those trillions of microscopic creatures are calling the shots in terms of our health, I believe.

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