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RLS Treatment

I suffered from a serious case of Restless Leg Syndrome. I have found adequate relief through management of diet. This page is about my experience and the particular dietary changes that have helped me.

(Note: I've tacked this page onto a site that is about investing; there is no connection between the main content and this.)

A very short history

A few years ago I started having difficulty with Restless Leg Syndrome (RLS), as well as some apparently related symptoms – peripheral neuropathy (in my case, numbness of the face and hands) and feeling short of breath at night. The feeling of RLS is unpleasant, but the real health issue is the resulting lack of sleep. At the worst period I was getting 2-3 hours of sleep per night, in chunks of 30-45 minutes. During the day I had a hard time remembering what task I was in the middle of, often couldn't remember words and sometimes couldn't complete sentences, and permanently lost some memories. At one point I got in my car and couldn't remember what the key was for.

One day I had a revelation. I was eating some peanuts for a snack and, at the end of the jar, popped a teaspoon or so of the remaining nut crumbs and salt into my mouth. A few minutes later my legs, normally not bad during the day, were so jumpy I was unable to sit down and work. It turned out the salt on the peanuts had, like many foods in America, monosodium glutamate (MSG) added. I began to systematically vary my diet and try to understand the results.

I'll leave out a very long story of dead ends and partial successes – I eventually found three things that seem to correlate very well with my symptoms.

  • MSG - in a large fraction of common foods
  • Chloramine - used to treat the water in many communities
  • Pesticide synergists - compounds designed to inhibit the elimination of poisons

Avoiding these three things allows me adequate relief. Let me qualify that statement. I would not say I'm cured. I am still very sensitive to many foods, and that does not seem to be getting better. So I think there is probably permanent damage to my nervous system from these poisons.

However, barring the occasional bad night after trying a new restaurant, I now usually get 6-8 hours of sleep with one or two short episodes of getting up to stretch during the night. My memory is functioning normally again and I can enjoy life and work normally. That is pretty good, and it is better relief than many RLS sufferers have found.

This relief is not gained easily. It requires considerable effort to avoid the three chemicals above, which are ubiquitous in common foods, and the measures I've taken are pretty extreme. Some people may find the cure worse than the disease.

MSG

Many people have problems of varying kinds with MSG, and there is already a great deal written about it. A little googling will turn up lots of helpful advice. The core of the story is that MSG is often hidden with deceptive labeling, so it takes some effort to learn what labels really mean, and then careful reading at the grocery store.

I can add two things to what is widely known about MSG.

First, sometimes MSG is added in a way that requires nothing at all in the way of labeling. The biggest problem, for me, it that it is sprayed on growing produce (in the form the of the commercial product Auxigro). This is not in any label, and one has no way to know if some attractive looking piece of fruit was contaminated while growing. Perhaps surprisingly, the use of Auxigro is also allowed under the organic farming standards. To avoid produce with hidden MSG, these are my rules:

  • If it looks juicy and delicious, be suspicious. Oversized fruits, and very shiny and juicy-looking fruits and vegetables, are more likely to have been treated.
  • The US is worse than the rest of the world, and California is worse than the rest of the US. If you can buy mangos or bananas from Latin America you are fairly safe.
  • Many US wines are a problem for me, but imported wines are usually fine.

Similarly, chickens are sometimes injected with MSG shortly before slaughter so that the meat will taste better, and this is not in the label. See more on chicken below.

Second, MSG is not MSG. That is, the product that is added to food is synthesized in a way that means it is not the same as natural glutamate. This explains why Parmesan cheese and Italian tomatoes, for example, both foods high in natural glutamate, are not a problem for most people with a sensitivity to MSG.

Chloramine

Over the last few years more and more communities have switched from chlorine to chloramine for decontamination of the water supply. Although there are some admitted issues – chloramine is deadly for many zoo animals and most aquarium fish, for example – it has the advantage of staying in the water longer than chlorine, and so preventing contamination of the water in the distribution system. Chloramine-treated water is also generally reported as tasting better. So those who choose the treatment method have much to like.

There are a few people who get skin rashes or asthma attacks from chloramine, but these reactions are sufficiently rare that they are ignored (or even ridiculed as imaginary) by those who make the water supply decisions.

I discovered that chloramine was a key problem for me when I noticed that, when I traveled, sometimes my symptoms would get much better, and it seemed not to do with the foods I was eating. I started looking up the treatment method for any city I visited, and found a perfect correlation: chloramine treatment, bad symptoms; chlorine or ozone treatment, much better.

Many bottled waters are just tap waters, and all are treated one way or another. Crystal Geyser is treated with ozone and works fine for me. I do all my cooking, including washing produce, with bottled water.

Unfortunately, avoiding chloramine requires much more than switching to bottled water. Food is prepared with water. I cannot eat bread prepared with local water, and drive 30 miles to a bakery in a town that treats with chlorine. When I go out to eat I avoid dishes that include a lot of water – like soups or anything prepared with a sauce.

I had to stop doing laundry at home – the steam from the dryer gets back into the house and gives me a serious reaction. I take my laundry to a wash-and-fold place now.

I don't drink domestic beer. Most imported beer seems fine (chloramine is much less common outside the US).

People with a sensitivity to chloramine sometimes complain of a reaction to milk. Experts pooh-pooh the complaint, saying that cows do not drink treated water. However it turns out that diary equipment is typically decontaminated with concentrated chloramine. I find that diary products are usually ok, but sometimes cause me a problem (perhaps if my carton of milk was first off of some newly-cleaned equipment).

Meat is often rinsed with concentrated chloramine solution just after slaughter, to prevent contamination. Chicken seems to be a particular issue for me. I buy one of those free-range-no-additives-no-preservatives brands, and rinse the meat well (using bottled water) before cooking.

Pesticide synergists

The last discovery took the longest. Both MSG and chloramine cause an immediate reaction – sometimes within minutes, but always by bedtime. However pesticide synergists act slowly and indirectly, and the effect is much harder to track down.

The purpose of a pesticide synergist is to make the main pesticide stay in the insect's body longer. That is, its whole purpose is to hamper the elimination of poisons. Unfortunately, it has the same effect in humans. Technically, it blocks the action of cytochrome P 450 in the liver, causing the liver to be unable to perform its usual function of eliminating toxins. Inexplicably, when pesticide synergists are tested for safety in mammals, their designed purpose is completely ignored. They are tested only in isolation, and of course found safe. They are not tested to see if they cause a build-up of other poisons. In my case, at least, they do.

In the long journey of very systematically varying my diet to track down problem foods, I made a short list of the safest foods that I could always go back to when necessary. Rice was on that list, so at one point I was eating mostly rice. The rice itself did not seem to be causing a problem, but despite my very safe (so I thought) diet, I seemed to be getting more and more sensitive to other foods. This was when I discovered that in America, rice often has quite high concentrations of piperonyl butoxide, a pesticide synergist. When I switched to imported rice, the problem went away. So now I eat only rice from Japan, Italy, and Vietnam, all of which seems to be ok.

Since it is much harder to clearly isolate the effects of pesticide synergists, I know much less about which foods are safe and which are a problem in this area. I've applied a broad brush, and try to eat mainly organic produce. That, together with the rice restriction, seems to take care of most of the problem.

Other bits and pieces

I'm still learning. Here are some other fragments of information that are less central to the story but possibly important.

Lipoic acid (especially the enantiomer R-Lipoic acid) helps my peripheral neuropathy, which I think may be related to the RLS.

Most supplements are synthesized these days, many in China under conditions that are not really controlled by the FDA, and contain many impurities. I find that some supplements exacerbate my symptoms. I rarely take vitamins but, when I do, I use vitamins that were made by plants and only isolated, not synthesized.

There is a similar issue with many food additives. I cannot eat most canned tomato sauces because they contain synthetic citric acid. I use tomato sauce from Italy that contains only tomatoes, basil, and salt.

I lost my sense of smell years ago. It has partially returned. This may be the diet or it may be the lipoic acid (there is a known connection).

Alcohol, sugar and caffeine – the usual suspects! – are not core causes of RLS, for me, but do exacerbate the condition; I limit these, by American standards, to very low levels (no alcohol, nothing sweet, and two cups of green tea, most days).

There are two Parkinson's medications that are often prescribed for RLS. They help some people. They both have terrible side effects. I tried one, mirapex, and found that, although it helped the RLS, it also completely deprived me of sleep – so no help.

Speaking of medications, the common decongestant pseudoephedrine exacerbates my symptoms.

There seems to be something about chloramine and high heat. Steam from the dryer vent is absolute poison for me, but a shower seems not to be a problem.

By the way, for anyone who gets rashes from chloramine, the shower heads that purport to neutralize the chloramine are useless. There is no time for the required chemical reaction, which needs several minutes. Instead, mix your vitamin C into a tub full of hot water and wait 10 minutes before you bathe.