Do you believe certain foods trigger RLS? I used to think so, but now I'm beginning to wonder.
RLS Food Triggers?: Do you believe... - Restless Legs Syn...
Restless Legs Syndrome
What is the reason that made you doubt Jason? Food clearly has an influence for many here. And I think it is. There are well known triggers such as alcohol, coffee and chocolate. This also seemed to be the case with me, but I also nights were i slept reasonably well on a red wine. I started a few weeks ago with 1x ferrofumarate every other day and my rls has been greatly reduced. My iron was 120. I can now eat anything I want. Coincedense? It can also be a quiet period and flare up again later. In two weeks I will have an iron check again. Measuring is knowing. In the meantime, I wish everyone on the forum a Merry Christmas. Lift up your heads!
River, what time of day do you take the iron? If you’ve only been on the iron a few weeks I doubt your ferritin has increased much. If your RLS has improved it’s not because you raised your already robust iron stores, rather I believe it is due to the increase in unbound serum iron from taking the fumarate. Especially if you’re taking the iron at night it is likely to be providing relief right then and there.
I take it first at morning at empty stomach with orange juice and take breakfast half an hour later. Have read here this is more effective as tree times a day. Can't beleave this is it, but it's the only change i've made during the last 5 weeks. And i had a normal cold last weeks. Sensations are stil waking me up but i doesn't have to leave my bed for almost a week. I'm courious what my iron rating is over two weeks.
Because I've changed my diet a million times. I've tried everything. Sometimes it seems to have an effect, sometimes not. Often eating something makes it stop. But I highly doubt that RLS is caused by a deficiency. I think a nerve or artery is being pinched. A change in posture or position often makes it stop.
Thankyou River58,the same to you and yours.can you please tell me what is Ferrofumarate and where to get it.I too believe that certain foods make my RLS a whole lot worse, I love a glass of red but it does not love me.
It's not a belief-- it is fact. Clearly demonstrated by so many people on this site.Loads of people have eliminated certain foods from their diet and experienced huge relief, if not total elimination.
You need to back up such a statement with clear evidence.
It may well be that you are unique in not having any triggers.
I do seem to have triggers, sometimes. But it's not always the same foods. Eating a large meal of anything is often a trigger. Then again, eating a big solid meal often makes it stop. If you are so sure of your trigger, then your solution is simple. Avoid your trigger.
Oh, the irony. You’re Insisting on evidence but you yourself provide only anecdata. Peer-reviewed studies, please? Thought not.
The way to get peer reviewed data is to get finance which normally comes form big food of big pharma. If the study is likely to going against either of them then good luck finding a sponsor.
Hi, ...as per Eryl..." peer reviewed data is to get finance which normally comes form big food of big pharma".... this is true and it won't happen as big pharma can't patent a food avoidance, Suppose they make a pill to combat a glass of red trigger, than would that brink 100bln for them?, they would have to have a pill for every trigger unless there is a rls "channel "of trigger (don't know how to better say that) established and it is blocked so any trigger will not aggravate rls, just a thought,
Depends on the individual. I don't have any food or drink triggers.I spent a year on a strict paleo diet. Then 9 months on low FODMAPS and 6 months vegan. No change to my severe RLS. I also drink 5 or 6 coffees a day as someone posted on here that coffee stopped their RLS attacks. So I started to drink it and it worked for me. Alcohol and caffeine and sugar are fine for me but not for others.
Everyone is different.
Agreed, some people seem to have food triggers, others like me seem to have more physical causes e.g. nerve issues and over exercise but I suspect there is a common underlying condition and we don't understand the full mechanics.
Joolsg, I have recently tried coffee because I also read on this site that it helped. I do think it helped me. However, I couldn’t fall back to sleep because of the caffeine. Do you know if this helps with decaf?
Yes decaff works just as well.
So maybe it's the warm fluid or the acidity which helps, rather than the caffeine.
I think it's something in coffee. I never touched the stuff before. I was a tea drinker. I therefore know it's something in the coffee.Weird but it definitely helps.
Hi Joolsg - can you let me know at what times you drink the coffee? thanks!
Dealing with Food Triggers are usually necessary although Not sufficient totally To deal with this. I do find that I Can tolerate some triggers For breakfast that I Can't later . But that is with Pregabalin. Dr. B joked if you want to drink alcohol you Just Need to do it before Breakfast.
I am another who does not seem to have food triggers. I used to like a glass of wine but because of the medicines I take I can no longer indulge in this. The wine did not trigger RLS. I can also drink coffee and indeed used to have caffeine tablets beside my bed which helped if RLS occurred during the night.
Add me in the list of people who can't find evidence of food triggers. Over a period of 30 years, the only consistent triggers I'm sure of are exercise and stress. These days, any form of exercise aggravates my RLS--such as walking a mile. Stress prevents me from sleeping soundly, which then allows the leg pain to get through. I'm experimenting with yinyoga now, which seems to be helping. Too soon to know for sure. RLS comes and goes, and triggers can be elusory.
My recent experimentation with food made me a believer in their triggering effects. I eliminated chocolate at night and drastically reduced caffeine. (I think caffeine was more about insomnia than RLS, however.) I added iron bisglycinate (every other day - 1 hour before bed). I also tried marijuana edibles, which failed for RLS. Next culprit I discovered was sugar - I'm missing the annual Christmas cookie binge. All said, I'm convinced RLS triggers for me include these major ones. I've been much better since. Many thanks to this forum!!
Definately, for me an anti inflammatory diet has eliminated my RLS.
Yes eliminated because some people object to the word cured. Suffice to say that I don't suffer from rls as long as I stick to the diet.
Cool! Please provide more info!
What info do you need beyond anti inflammatory diet?
What do you mean by anti-inflammatory diet? I've read several books on this, and they all have different ideas of what is anti-inflammatory. Most say that only fruits and vegetables are anti-inflammatory. Some say nuts and seeds are okay, some prohibit nuts and seeds. Some say salmon is the only anti-inflammatory meat, others say any lean meat is okay. Some say that fruit is actually inflammatory because it raises insulin, but so does fatty food, which is condemned by some and embraced by others. What about cooking methods? What about organic vs. non-organic? Also, the fiber in fruit and vegetables is very inflammatory to people with gut issues, so those anti-inflammatory foods are actually inflammatory for some people. Hence, nobody really knows what is meant by anti-inflammatory diet.
I mean a diet that doesn't cause inflammation. the biggest cause of inflammation are foods with a high GI and refined seed oils.
So processed meat is okay and fruit is inflammatory? Pineapple and dates have a GI of about 100 yet they are very anti-inflammatory
I bet you're a hit at parties eryl!
The Prozac is making your symptoms of RLS worse than they have to be. With that said, I believe it has afforded your D2 receptors some protection while on the DAs. You should stop the Prozac before you stop the DAs.
I definitely have food triggers. I have been on an anti inflammatory diet for about 8 months and it has helped with symptoms.
I vote no food does not affect my RLS. I tried a full Keto diet for 4 months with no sugar. No affect on RLS. I eat an order of magnitude more cookies than anyone else (I swear off them every morning, but then night time comes)
I do place a vote for Iron, taken on an empty stomach with a little vitamin c about 2 hours before bed.
Absolutely and without a doubt!!!!
My RLS is definitely affected by food, chillie, spices, sugar, I have to have it before midday so it can wear off.I have also given up alcohol now for 6 weeks and this has dramatically reduced my RLS.
PLUS urine in my bladder, if I keep getting it when trying to get to sleep I get up and gently force myself to pee, I don't feel like I need to but I always eliminate another small amount, this might happen up to 4 times over an hour and then I can fall asleep.
What a curse RLS! can almost drive me insane!
Potassium Sorbate (E202) sets my legs off like nothing else. It’s taken me years to isolate that sensitivity. Any and all artificial sweeteners set them off too. I have no issues with the usual culprits like coffee, alcohol, chocolate etc.
JasonMorte i do believe for most suffering with RLS foods can trigger the worsening of symptoms. For some this may not be the case. For me i know it has played a big part.
This takes me back to the saying “you are what you eat”.
In addition to the one constant when any patient gets diagnosed with whatever health condition (not just RLS), is Diet.
Nevertheless not everyone feels the impact.
Something to think about I guess.
I dislike seeing any animosity on this forum as is it has been life saving for me.
We are all individuals and we all have our own experiences to share, those experiences then going on to helping someone else.
One thing I have learnt about RLS is to first look at General Considerations before going down the medication route to relive symptoms. And yes you guessed it, one of them is diet lol. Others would be, checking iron levels (ferritin), including aggravating medications (for me it was antidepressants / antihistamines).
RLS is a awful disease and the approach taken towards it, is the same approach taken towards MS in the 60s/70s (I heard somebody mention that on here ) but it’s true. Hoping we get there one day.
Wishing you all the best. Merry Christmas.
And Merry Christmas to you all on here including Madlegs1 Hidden Joolsg Elffindoe and all others who have just been amazing on here.
Stay well. Stay safe.
I had problems identifying food triggers until I started looking into MSG, and discovered all of the different names that it is hidden under in foods that are processed. (Google names for MSG.) Then the pieces started coming together. Avoiding it hasn't eliminated my symptoms, but it has certainly decreased them.
I am a firm believer that inflammation is public enemy #1 of the human body. It causes many illnesses and exacerbates all known to man/woman. This definitely goes for RLS too. Many foods increase inflammation in the body. Stress is also a killer of good health. For me sugary foods, acidic foods (tomato sauce, etc.), rich foods, alcohol, carbs (basically sugar), too much excercise, and any foods that cause gastrointestinal issues (this is a big one). As far as caffeine, i don't believe i have a problem. My take on this is RLS kicks in when the body slows down and caffeine is an upper. Thanks much! Peace!
Personally I used to find that tonic water (yes, really!) made mine a whole lot worse. As for other foods/drinks, I have done several different food group diets over the years (specifically for other issues) & found that nothing else had any bearing on RLS in MY case. I had a similar experience to River58; I was put on iron by the GP for anaemia a few months back & have had no issues with RLS since (which as you can imagine, after 30 years of suffering is one hell of a relief!). I have been prescribed iron several times over my life (suffer with my iron levels a lot) and this is the first time I have had relief from the RLS. I think MAYBE it's due to the fact that I am usually prescribed Ferrous Sulphate to raise my iron levels but this time I was given Ferrous Fumerate (which is the only difference I can think of). Don't get me wrong, I'm not saying it's some 'magical cure' but considering how bad my RLS was (I used to get it every single night, often in the late afternoon/early evening and had recently been getting it in my arms too) I am amazed. It may not necessarily work for you but I know a lot of people are having success with iron treatments. I would say to definitely get your iron levels checked. I started off on 3 a day & have now dropped to 2 a day; one in the morning and one about an hour before bed.
Yay! And Yay! Now that you mention it, I wonder how River58 is doing. People come on here all of the time, try the iron, get relief and leave. Never to be heard from again. I'm glad you poke your head in once and awhile.
I have to see how my medical fellows are doing 😉 Besides, you never know when you may get a little help or be able to offer some to somebody else.
The FIRST thing any doctor should do when you see them about RLS is take full panel bloods. It's been known for years that people with RLS respond to raising ferritin levels. As most doctors aren't taught anything about RLS, they are unaware of this and fob people off, saying ' all your bloods are normal'. Normal for non RLS sufferers maybe, but we need much higher levels.How many of us would have found a solution to severe RLS if the medical profession were properly educated about RLS?
Many of us were put straight on dopaminergic meds and now do not respond to iron ( probably because our dopamine receptors have been permanently damaged by the meds).
I'm delighted the iron has eliminated your RLS.
Hi Jools. Sher did have an iron panel, but I believe for another one of her conditions and was told it was "normal." Thanks to you and Elffin she got a copy and looked specifically for what her ferritin was at and then showed it to another doctor who recommended an iron supplement. The iron worked the first day for her and every day since, with maybe one blip. At any rate, but for you guys she would still be suffering, or like you said, on the maniacal DAs.
You are completely correct. I was actually about to start Propinarole for my RLS but thank God the iron seems to have sorted it out as I certainly wouldn't have wanted to take that bugger. In all the years of me having RL, not once has a GP mentioned iron may be a factor. It was only after noticing for myself that the iron seemed to have done the trick, confirming it on here with others and then speaking to a different GP and mentioning how well it was working for my RL that this particular GP began talking about the specific levels for RL etc.
I believe there are hundreds of thousands who would probably have benefitted from iron ( by infusion) if anyone in the UK medical profession had been taught the basics of RLS.So many of us just don't respond to iron after Ropinirole or Pramipexole.
That's why we try to warn people from starting them.
It's great that you have found a solution.
Success stories give hope to other new members.
This is the place for opinions so I have to insert mine. I am not in favor of infusions for RLS. I do not believe there is a “magic” number for ferritin. I believe it’s crazy to force people’s ferritin up to 300 or 400 or 700. CRAZINESS!!! Or is 248 ferritin the magic number? Based on dozens and dozens and dozens of anecdotal stories on here (including myself) it appears that RLS has everything to do with serum iron, and little to nothing to do with ferritin. I know some RLS experts would disagree with me, but as you may recall, about 8 years ago we on here realized how bad DAs were for RLS yet it took the medical community another 6 years to come to that same conclusion. I think we on here have discovered that increased levels of serum iron is what counts, not so much ferritin. At the very least, before we suggest to members to get an infusion and even provide names of doctors and hospitals that are amenable to giving infusions to RLS patients, we should say something, anything about the possibility of an immediate affect of taking a highly bioavailable iron tab about an hour before bed. Our members have absolutely nothing to lose (except $8) and potentially an over night solution to their RLS.
Jools, we can't put the Genie back in the bottle. We know beyond a shadow of a doubt that iron has an immediate affect for many, if not most, non-DA sufferers of RLS. The key is "serum iron" not ferritin. I truly believe that ferritin levels in the body have little to nothing to do with the symptoms of RLS. One too many people have gotten their levels up to between 200-400 and were told by their doctors to stop the supplements and then they came crying on here that their symptoms returned immediately upon discontinuing that supplement. Do you not think we should at least tell people about the "possibility" that iron can have an immediate affect, and that they must take it night after night if they want relief every night? Of course, if they only get symptoms of RLS a few times a month then I would only take it on those nights. If it doesn't help immediately (like that day immediately) they can give raising their ferritin a shot. Change is hard, I get it. Trust me, nothing but good can come from advising members about this "possibility." And as you can tell from my profile page, I always advise people that they must be aware of their ferritin levels to avoid any possibility of iron overload.
"The future depends on what we do in the present." Mahatma Gandhi.
Is there any evidence that one form of iron is more absorbable than others? Fumerate? Sulfonate? Bisglycinate? I had been taking bisglycinate for four months and it has not had any impact on my symptoms. I've just completed my fourth (out of five) round of an iron sucrose infusion. Do you think the one hour before bed is key? I start noticing my RLS in the late afternoon/early evening. In the last few weeks I've been taking .25 ropinerole to help with tapering down off pregabalin (which I can't stand, BTW)
Fatniss, see my profile page. I'm too busy primal screaming over your infusions to type coherently. Did you get that great idea from here? It's not so great an idea and iron sucrose is probably the worst of the worst. Your 49 ferritin was perfectly fine, even for someone with RLS. Plus, I see that a mere 150mg of pregabalin gave you relief from your symptoms. That tells me (note the me) that your receptors are probably at baseline and that your RLS would be mild if you washed the SSRI out of your system. You can't have RLS and be on SSRIs. You just can't. Plus, you're on them for anxiety and panic. Let me primal scream some more. You've meditated, in a serious way, I see. You've come to understand, at a deeper level, what this strange earthly existence is about. I think part of the reason you and I are here are to become warriors because I too have had my share of panic. I can't really call it panic because that's too mild a word. Whatever it is, IT took me. I would try to speak, but no words came out. Long story short, I HAD to experience that. It is the ONLY path to becoming a warrior and I want to be a warrior more than anything else in this world, except maybe my son going into science instead of accounting. That panic, I believe, is our spirit guide, in disguise. When you meet and greet that Panic/Spirit Guide and ask it where it is leading you and what it is trying to show you it will lessen and likely cease to visit you because it will have accomplished its mission. That panic/spirit guide really is trying to teach you something and if you look for the lesson you will find it. The panic attacks will pass but you will have other horrendous moments and feelings including grief, loss, loneliness, but once again it is all part of that path to us becoming warriors. As you survive each of these ordeals you can count coup. Counting coup is the highest honor a warrior can achieve.
Like I said, you shouldn't be having infusions or taking DAs until you know what your RLS is like without the SSRI in your system. From there you can plot your course which should probably include fasting from 7pm till breakfast as well as what is described on my profile page.
EDIT: Attached is my worst nightmare - to live a life like that of the blonde couple. Give me panic, anxiety, fear, sadness, joy (however fleeting) over a flat-lining life
Thank you for advising about taking the iron every night! At first I was taking iron bisglycinate 25mg every other night. Then I noticed that I had breakthrough RLS symptoms on the nights I didn’t take the iron. So now I’m taking the iron every night with relief. It’s good to let people know to try it and keep track of their iron panel. I’m also taking Gabapentin and fasting after an early dinner as you recommend. I’m one of the poor souls that was on Requip for about 15 years and experienced augmentation…so maybe iron helps some of us. I think it’s good to let people know this is something to try.
Hi honey. I always love hearing from you. I'm beginning to think RLS is the easy part and it's really people's comorbid illnesses that are the bigger problem and I never thought that before. I think there's a whole world of people out there with RLS in it's pure native form and it's genuinely and generally a mild disorder. We rarely see those people so we think it's this evil beast when really it's the SSRI's for depression, the statins for high cholesterol, the H2 blockers for Gerd. Then doctors prescribe DAs and it's all downhill from there. You're living proof of what I'm saying. I'm living proof of what I'm saying. Sher78 is living proof. My point is this, I see a new day dawning. The tide is turning. People are getting well in droves - in terms of RLS. We understand the mechanism behind this disorder. It is no longer a ghost in our beds at night. Please speak up about your journey whenever you feel it is necessary on here.
Hi lonepine. Just want to add my thanks to you and jools and madlegs and everyone here who patiently continue to post and discuss. You are all so well informed and democratic in your knowledge. You have made a huge difference to lots of us that simply lurk and read. What I can’t get my head round is the iron question. Are we talking ferritin levels so take gentle iron every second night or are we talking serum iron which means taking it every night? There does seem to be a fundamental difference here and I have no idea which to do.
It's simple. I'm right and the entire medical community is wrong. (American sarcasm) I believe ferritin has little to nothing to do with RLS and that it is rather that relatively small amount of what I call "unbound" iron in the blood (actually called serum iron) that matters in terms of RLS. Now mind you, our brains supposedly have trouble storing iron and that is probably one of the major underlying causes. That only furthers my belief that we with RLS really rely on that unbound iron in the blood to keep our dopamine system chugging along. Everyone, even non-RLS people, need iron to keep their dopamine transport system running smoothly. The problem is when that serum iron drops at night (everyone's serum iron drops at night) we with RLS are bothered, whereas the non-RLS world is not. Not only are we short on brain iron, but we have lousy D2 receptors which are really important in transmitting dopamine down our spines (collectively known as the central nervous system) and to our "peripheral" nervous system where it quiets our arms and legs. The rest of the world has a normal number and size of d2 receptors. We're in double trouble...no brain iron and small and few D2s. Thus, I believe in giving my brain some much needed iron before bed, which thankfully is when hepcidin is low and it seems the ferrous bisglycinate is readily absorbed into the bloodstream and able to provide me and others with complete relief.
The above explanation also explains why some people with spinal injuries have terrible RLS. I believe it's because that injury acts as a road block to that neurotransmitter (we call dopamine) from bouncing its way down the spine. I picture us as having this weak signal (coming from weak and pathetic receptors) that has trouble pushing past that injury. The vast majority of the world can injure their spines and never have so much as a twinge of RLS. But if you have RLS, or are predisposed to it, that will be the straw that breaks....
There's a point of no return in terms of taking an iron supplement at night. If you're taking a potent dopamine "antagonist" such as an SSRI or melatonin (and to a lesser extent statins) the iron is liking whistling in the wind. Or if you are on a DA, or recently off one, the nightly iron supplement seems to be ineffective as well, probably because another set of receptors (called D1 receptors) that give off excitatory signals are made big and bad via the DAs. So in other words, rather than being in balance as Mother Nature intended, now there are more excitatory signals going down (and coming from) the spine than the calming ones that are coming from our D2 receptors. The iron is great at keeping those D2 babies humming along, but doesn't seem to touch those bullies. Still, anything that helps the D2s should be good and provide a modicum of relief, even for those on the DAs. And the same can be true for those with spinal injuries...meaning the iron might not make the signal strong enough to completely push past the injury. However, spinal injuries and just general wear and tear can improve over time and thus even though the iron may not help initially, at some point, as things improve, the iron may be enough to provide complete relief. There was one woman on here who had an ankle injury and developed RLS in her foot only. Her story gives me the chills. Makes me feel like we who are pre-disposed to RLS are so fragile.
I always put up or shut-up. I tell people to try a capsule (or two) of the ferrous bisglycinate one night on an empty stomach and see what happens. If it doesn't provide near complete relief that very first night then go to the every other night method and see if raising your ferritin helps, thus proving me wrong. It's simple, easy and cheap to give this a whirl and we should always tell new members to give it a try. Now mind you, there have been at least three people who have come on here proudly proclaiming that they got their ferritin way high (like 400 high) and were gonna stop the supplement. A week later they come back on complaining the RLS has returned and in one case we all agreed the member should go back to taking the iron even though her doctor told her to stop. So, I'm beginning to think that even taking the iron every other day gives you a higher day to day serum iron level, which remains high enough (higher than an RLSer who isn't supplementing) such that even after that night time drop in serum iron there's enough circulating to keep symptoms at bay. In other words, our new buzz word should be SERUM IRON, not ferritin.
Got all that?
Yep got it. I’ll try the every night thing for a while and see. Will let you know. Thanks so much for continuing to expound and explain.
Yes please let us know…for better or for worse. A good test is a night when the RLS is really rearing it’s ugly head. You should feel relief about an hour after taking the iron.
I highly doubt that iron of any kind has anything to do with RLS. I've tried iron bisglycinate, one capsule, two capsule, three...doesn't matter. Honestly I'm getting pretty sick of hearing about iron. Might as well blame boron, chromium, or manganese. According to some reports, iron is one of the most common deficiencies among humans...but the same is said about D3, magnesium, potassium, B12, and everything else. Like everyone else, I've sometimes felt that RLS was triggered by dairy, wheat, sugar, alcohol, caffeine, acid, spices, starch, fiber, fried food, fatty food, particular activities or particular supplements... In the end we'll probably learn that it is caused by a bacterium or pinched nerve.
Do your due diligence. Come to understand the mechanism behind RLS. There's more than enough scholarly articles and clinical trials to come to a working knowledge of it. Then come back on here and I'll take you seriously.