RLS from personal diet rhythms--easy solution

[Sharonartist]

I have had restless legs (RLS, or Willis-Ekbom Disease, which we called "jumpy legs" in our family) since about age 11, which usually kept me up until 4:00 AM every night, after which I had to get up about 6:00 for school, meaning I was continuously sleep-deprived. Although others seemed to do it, I did not think it possible for me to lie still in bed without moving my legs. This situation continued until...

At the age of 27 (1979-80), I went on a trans-African camping expedition. During the trip, we took quinine to prevent malaria, and I didn't have restless legs for the first time I could remember. When I got back to the USA, my doctor prescribed quinine sulfate 325mg for my restless legs, which I did not take regularly/preventively, but only as needed (that is, before bed if I had restless legs). The effect of quinine sulfate on restless legs is the closest thing to a miracle I have ever experienced. The quinine passes directly into the blood from the mouth, so even before I got into bed, I could feel the effects, which was like a warm, cozy, totally relaxing "wash" over my legs. (As far as I can tell, quinine is the only effective medication for RLS; the new medications don't work well and appear to have horrific mental side effects.) I continued to use quinine tablets as my first line of defense against RLS until...

In 1989-90 I traveled for a year and a half around East and Southeast Asia. Unfortunately, when I returned, I developed candidiasis (another horror story). It was when trying to diagnose (pre-internet) and treat this disease, that I made my discovery about what was causing my restless legs. This was because, in order to try to pinpoint the causes of my candidiasis symptoms, I had to eliminate virtually all the foods I normally eat. (An aside on candidiasis: After six months of misery and incapacitation from this grossly underestimated disease [not recognized by most doctors at the time], a friend suggested I might have candidiasis. A doctor prescribed oral Nystatin, and within three weeks all the symptoms were gone.) That's another story, but the point is, my experience candidiasis had a silver lining, which was to solve my RLS problem...

During candidiasis I was fasting (or semi-fasting) and systematically adding things back into my diet. I noticed that I didn't have RLS during fasting times. I had also read the book An Alternative Approach to Allergies by Theron G. Randolph, which was an early book exploring environmental causes of disease (not just "allergies" but many kinds of toxic reactions--very unfortunate book title). Fairly quickly I figured out that in my case, restless legs were a withdrawal symptom to certain foods that I was eating on a regular schedule. To summarize the primary point of that book:

Everybody knows that most people can be "addicted" to certain substances, such as caffeine, alcohol, or nicotine. The result is that when one imbibes the substance, there is some positive response, but after some hours, the positive reaction wears off, and you have withdrawal symptoms (such as a caffeine headache); then you reingest the substance, and so forth. This is called "addiction" when the substance is something that is "bad" for you and/or you are unable to stop the cycle. But the addictive substances that are well known are not the only ones that have this effect--why would they be? Almost any chemical you ingest could have an effect on your particular body chemistry. For example, many people get tinnitis after taking aspirin. Most people have noticeable responses to spicy foods. Some people can't stomach dairy products. Some food may cause canker sores. Foods are just tastefully dressed chemicals, and there are all kinds of things that happen when people eat them. Generally one doesn't notice the effects (and infrequent exposures often have no withdrawal effects, though they may have ingestions effects), but with some foods one may get into a cycle of exposure/withdrawal. Each person has their own food cycles/addictions, but they have no ill effects, so most of them we don't notice in the noise of daily life, and few of them dictate our diet choices. People just tend to eat certain foods on certain schedules; they feel fine; they are unaware of any food responses unless something "goes wrong." In my case, restless legs was a withdrawal symptom for a small number of foods that I ate on a regular cycle. Symptoms of withdrawal are usually much harder to spot than initial responses to ingestion, like getting tinnitis or a canker sore or a stomach ache, because they do not occur right after eating something, but hours later.

I quickly found a handful of foods that led to RLS, and by paying attention to what I was eating and when, I learned all my relevant cycles. For example, I was on about a 5-hour cycle on milk (that is, I would withdraw and have restless legs about 5 hours after my last milk intake--and it might not even be the milk; it might be a chemical used in processing or preserving it); I was on a 12-hour cycle for eggs; and similar long cycles for beer and cooked tomatoes. I made a list of my food triggers, the number of hours in the cycle (ranges between 3 hours and 24 hours), and other notes. For example, 90% of my restless legs occur in the left leg, so when my right leg twitches, it is very easy to find the culprit since I have only four known triggers (rum, pecans, corn, red dye #40). When I reached menopause, I noticed that the number of foods/other substances causing RLS increased dramatically from about five (milk, corn, beer, tomato, chicken) to about 25 (but lately seems to be diminishing again). They include mostly foods, and a few additives and medications. Some are things I eat every day; others I rarely eat. (My research was made much easier because for most of my life I was poor and almost never ate packaged foods or ate out, sparing me from both lengthy ingredients lists and unknown ingredients.)

I did not eliminate anything from my diet; I just made sure to eat the trigger foods before bed. As a practical matter, making sure you have bedtime access to all your trigger foods can be a problem. For example, if I have a beer during the day, I make sure to leave a teaspoon in the can for later. I use mayonnaise (which I always have on hand) to stand in for egg. A dollop of catsup subs for tomato; a pinch of polenta for corn; a few drops of soy sauce for soy (which is a trigger in large quantities but not small). I keep a stock of tiny morsels of chicken wrapped up in the freezer, and I set aside a morsel from other problem foods I eat during the day. If you eat out, you never know what might be in all those tasty sauces, so best to take home a little doggy bag if you can.

In any case, at bedtime I think back on what I ate each day, go through my list, and take a tiny serving of each culprit right before bed. And I mean a TINY amount--about 1/4 teaspoon. Some foods appear to go straight from the mouth into the bloodstream; a few seem to require a longer journey through the intestinal tract. It rarely takes more than a minute or two to work. If I forget something, my still-twitching legs immediately tell me to think harder about what I ate that day, and then I get up and remedy the omission, after which the twitching stops. This is so effective that I can almost always stop restless legs within minutes. The other night, for example, based on my food intake that day, I had a sip of milk, a peanut, a small dollop of mayonnaise, and a tiny piece of chicken, and got into bed. No restless legs, but I woke up several hours later with a slight twitch in my right leg. After some thought, I remembered that I had also eaten a miniature candy cane at my place of work that day, as well as a small chocolate that might have contained pecans. Both pecans and red dye #40 are triggers for my right leg. No need to pinpoint which was at fault: I took a little of both, and the twitching stopped.

I readily admit that some things I can't explain. For example, for me, eggs and chicken are not interchangeable. Nor are milk and half & half. Go figure. Cooked tomato is an issue; fresh tomato, not. Some complex/packaged foods that I eat frequently cause restless legs, but I don't bother to figure out which particular ingredient is the problem, because I just want to get to sleep, not spend my life experimenting. Also, I can usually get to sleep by about 4 or 5 AM even if I have restless legs; I don't know if this is because by that time I am just so tired I sleep in spite of them, or because there is some interaction with my biological clock that makes restless legs diminish around that time. I rarely have restless legs in the morning or during the day, despite being off-cycle. But again, any time I feel them starting, I can immediately stop them with my food cure. I would never take any of the current mind-affecting drugs for RLS.

Until it was banned (shame on the FDA!—where are all the dead bodies from the tens of millions of people who took quinine for malaria during the 20th century?), I still had access to quinine sulfate pills, but after 1992 I almost never used them. When they were banned, they were too precious to waste, so I divided them in half (they still worked), but they were only for "emergencies." What are RLS "emergencies?" Any time you want to get to sleep and can’t implement your food cure. For example, camping trips can be problematic if it is 30 degrees out and your icebox is under your bed or out in the car. Or while traveling. Once in my 30s I was packed into a huge plane to fly to Hawaii. The plan got stuck on the tarmac for several extra hours, and we could not leave our tiny seats. This was before I understood restless legs, but I got them and was in agony for many hours As soon as I got access to my checked luggage in Hawaii, I took quinine and also put several tabs of quinine in my purse, where I have carried them ever since. I learned my lesson. (Even though my doctors have diligently refused to give me any quinine since 2000, apparently thinking that a tiny increased chance of death is more important than never sleeping, I still have a few of these precious pills left & hope they are still potent when needed.) My serious traveling days are behind me, but without quinine, I'm not sure how travel would work, because you almost never have access to the necessary foods at your hotel, campsite, etc. Maybe other countries will still let people buy quinine. Or, before leaving, you could make up your own medicinal powder from dehydrated foods. Or, you could carry a tiny vial around with you, into which you could put tiny portions of the trigger foods you eat during the day. However, because one tends to eat an irregular and varied diet while traveling, restless legs may occur less frequently to begin with.

The foods that trigger my restless legs probably have nothing to do with the foods that trigger yours. And it is also possible that non-edible environmental exposures may also trigger symptoms, if experienced on a cyclical basis. But most likely some of the foods you eat the most are the ones triggering your problem. For anyone with restless legs, I strongly recommend going for a few days on a limited diet of foods you rarely eat (I ate white rice, canned tuna, and orange juice), which will probably eliminate not only restless legs, but perhaps some other symptoms you didn't associate with food. At first, you may have more restless legs, because you won't be feeding your addiction and will withdraw, but this should disappear in a day or two. Once your RLS has gone, then gradually add back your regular and favorite foods, one at a time, and see what happens. Give things a few days to work; often a single exposure is not enough to trigger the response. (Do people get caffeine headaches if they drink coffee once? No.) If you get restless legs, then see if eating a tiny serving of a particular food before bed helps. Once you have finished the research, there's no need to eliminate any food from your diet; just eat a little when you need it.

Based on my experience with candidiasis, I am convinced that not only restless legs, but numerous other symptoms (like maybe "going postal") are due to reactions to environmental stimuli. But at least in the case of restless legs, if it is caused by something you are eating, you can stop chasing after dozens of treatments that are time-consuming and don't work, like massages, hot baths, exercise, and so forth. For me, my food cure has been working 99% of the time for 30 years.

[Rustsmith]

Before I retired, I was an international traveler to countries in SE Asia, the Middle East and Western Africa, which are all malaria endemic countries. The FDA banned the use of quinine sulfate for all except a very, very small number of situations. They did this for two reasons. One is that they found that quinine was causing heart valve defects to occur, which was killing people. The second reason (which is also why you will not find quinine available in other countries now) is that the parasite that causes malaria developed resistance to quinine. This resistance started in Africa and slowly spread across Asia during the mid- to late-80's. There are now alternative malaria prevention medications that are safer than quinine and these are readily available around the world (especially Malarone). Malaria has been killing thousands (approaching millions) of children each year and the use of quinine was simply adding to this toll because people thought that it helped when in face, it was doing long term damage. I have a good friend who almost died of malaria because he was using a quinine based prophylaxis and was bitten by a mosquito carrying the quinine-resistant form of malaria (falciparum).

And for those who think that tonic water is a source of quinine, it has just enough quinine to impart the bitter taste. The quinine content is in the low ppm levels, which means that you would need to drink gallons of tonic water every day to get the same dose as a single quinine pill and that volume of water would cause "water toxicity" which occurs when you wash all the sodium out of your body and water toxicity is very serious and can cause death in about a single day.

[ViewsAskew]

Given how many genes are involved in this insidious disease and how many people post their experiences here, I am relatively sure that diet works for some and not for others. It could be that diet blocks iron absorption in some folks or causes some other issue that impacts the disease.

For others of us, especially those of us who had this as young children (that would be me) and who've experimented greatly with diet with no results, it seems less likely that this helps. I absolutely advocate trying it as it absolutely may help. I also suggest that anyone who tries diet not get too excited before hand that this will resolve their symptoms. It may. I may help some. And it may not help at all.

[Frunobulax]

Agree with Ann and Steve. I have tried dozens of diets, including fasting. Whenever I fast for more than a day, my RLS gets worse, a LOT.

I agree that there may be environmental toxins that are hard to avoid and perhaps that we're not even aware of, but what's the solution? Even if you live on a farm in a rural area you'll get in contact with gazillions of chemicals every day, stuff that wasn't around 100 years ago.

[Monolight1]

Using small amounts of those trigger foods before bed as a preventive measure sounds super smart and effective.It's also pretty cool that you found relief with quinine sulfate, despite all the controversy around it.Sharing your experience inspires me to look into dietary and environmental factors as potential triggers, leading to more holistic and personalized ways to manage RLS.
Thanks for sharing

[Lissa496]

I have had RLS since I was a child, my gram called it growing pains! I would put my legs up on my wall and try to fall asleep with them up in the air and my head on the bed, crazy but it was one of the only things that worked back in the day, now I use a wedge and put my legs upon it, if I have a real bad day, otherwise I take my usual opioid.

I have tried several diets, even the low-ox diet suggested on this site and none have let my legs rest. I wish I could cut out a food item or add a supplement and my legs would feel better but none of them seem to work my legs. I am happy for those who are getting relief through whatever method is working for them though!

Best of luck to all ~ Lisa

[ViewsAskew]

I have had RLS since I was a child, my gram called it growing pains! I would put my legs up on my wall and try to fall asleep with them up in the air and my head on the bed

Same (except gram, who also had it, called in jumpy legs). In fact, last night, there I was with my legs on the wall....