Location of RLS Symptoms Changing

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ViewsAskew
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Re: Location of RLS Symptoms Changing

Post by ViewsAskew »

And, we tend to have a bias for "natural" when that really doesn't mean anything. Arsenic is natural, for example. There are so many ways to approach this - we all just have to choose what we think is best, taking in account what matters most to us - and hoping our cognitive biases do not get in the way too much!
Ann - Take what you need, leave the rest

Managing Your RLS

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Rustsmith
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Re: Location of RLS Symptoms Changing

Post by Rustsmith »

I always love the terms "natural" and "organic". With my background in chemistry and metallurgy, everything is natural except for a few atoms of unstable matter that is formed in some type of atom smasher. And the only things that are not "organic" are those things that are inorganic, like metals and some types of stone. But I also understand that most people think "natural" means something that comes directly from nature and that organic means healthier. Unfortunately, the botulinus bacillus and other deadly bacteria and viruses are both natural and organic and all of the heavy metals are natural.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Frunobulax
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Re: Location of RLS Symptoms Changing

Post by Frunobulax »

Oozz wrote:
Tue Jun 16, 2020 12:48 am
In the end, it is all a trade off. Are you willing to sacrifice relief now for the hope of a cure later on?

I’m only 33 and I’m willing to shave off some extra years later so that I can wake up refreshed and run around with my son. But, everyone’s situation is different.
Well, we have no choice but to take medication once our RLS gets so bad that we can't sleep anymore. And unfortunately many neurologists give us no real choice with the medication, as they will prescribe nothing but dopamine agonists unless there is a clear indication against it. I really hope this will change in time, but it won't change quickly.

Not that I'm happy with opioids, mind you. But my personal opinion is: I consider it very likely that dopamine agonists do more long-term damage than opioids, if opioids are administered in the correct way (time-delayed release to have a relative 24/7 stability in opioid levels).

Frunobulax
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Re: Location of RLS Symptoms Changing

Post by Frunobulax »

ViewsAskew wrote:
Tue Jun 16, 2020 2:20 am
And, we tend to have a bias for "natural" when that really doesn't mean anything. Arsenic is natural, for example. There are so many ways to approach this - we all just have to choose what we think is best, taking in account what matters most to us - and hoping our cognitive biases do not get in the way too much!
You know my opinion (viewtopic.php?f=5&t=10791) :) I don't really care much for organic vs. chemistry, as long as it fixes the root cause. "Natural" medication can have more side effects than drugs. Other "natural" medication works only through placebo effect. But mostly "natural" or "organic" are buzzwords used from marketing departments.

There is an episode of Penn&Tellers "Bullshit" (yes, that's the name of the show, I really like it even though I disagree on a few topics) regarding "organic" food. There are so many misconceptions, people expect organic food to taste better, to have more nutrients and so on. And this is bs, organic food often tastes less intense or sweet, and it spoils much faster.
But I do believe that organic, non-GMO food is more healthy (if it's truly organic) as industrial food is cultivated or even genetically modified to contain more lectins and other antinutrients. They keep insects away, making the crop more stable, but they also harm us if we get too much of them. And the absence of antibiotics and certain fertilizers (which at least here in Germany is the condition that a food can be labelled "organic") is important, I think.

So I guess I do prefer "organic" food, while I'm agnostic there when we're talking about medication.

XenMan
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Re: Location of RLS Symptoms Changing

Post by XenMan »

Frunobulax wrote:
Wed Jun 17, 2020 3:28 am

But I do believe that organic, non-GMO food is more healthy (if it's truly organic) as industrial food is cultivated or even genetically modified to contain more lectins and other antinutrients. They keep insects away, making the crop more stable, but they also harm us if we get too much of them. And the absence of antibiotics and certain fertilizers (which at least here in Germany is the condition that a food can be labelled "organic") is important, I think.
The organic food conversation is an interesting one over the last couple of decades that ends with a ‘yeah, however…it doesn’t really matter that much’ answer.

It started with the natural pesticides plants produce to repel insects known as phenols, including lectins. So with organic vegetables you have more ‘toxic’ phenols that are bad for you than traditional agriculture , so you are poisoning yourself. With further studies there was some evidence that your body reacts to these phenols with a protective response that actually has health benefits. Also there is the toxicity of pesticides sprayed on the fruit and vegetables.

However, it is a requirement in most developed countries that pesticides used in agriculture breakdown before retail sale. There is also no clear reason as to why, despite numerous studies, that show that a large amount and variety of plant material in the diet has real demonstrated health benefits. Microbiome improvement has the best evidence, followed by vitamins and minerals, and phenols being more suggested.

But studies on vitamin and mineral supplements, and anti-oxidants, show no benefit in a ‘more is better’ approach. Also the impact of phenols is less than conclusive.

Anti-oxidants have now been shown not to be good in high quantities due to the impact on ROS (reactive oxygen species). ROS was thought to be bad due to cell damage, but is important to take out cancerous cells that all of us have in our bodies right now, as they are just part of the business of living. High anti-oxidants, and interestingly a high alkaline diet, reduces ROS which in turn increases chances of cancer. This is still ‘chances’ and not definite, and you are unlikely to consume enough through food to have a negative impact on ROS. So as long as you aren’t deficient in nutrients, plant based foods don’t seem to improve health via this mechanism.

It is also important to remember that many phenols are found to reduce the chance of certain conditions by sometimes 20 to 50 %. Which sounds great until you realise that these conditions in most cases have a chance of around 1 in 500k or up to 1 in 1m, so you are making an unlikely condition just a bit more unlikely. Also you would go insane tracking down every supplement based on plant phenols, or eating large amounts of the original food, to reduce the chances of every condition known to man.

So the whole organic and inorganic debate becomes a bit more philosophical than based on nutritional science. So even though there are no clear answers, it either won’t make much of a difference or is slightly weighted to organic being possibly better. GMO is another subject all together with far too much emotion attached, but also a lack robust trials to quell concerns of safety.

Oozz
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Re: Location of RLS Symptoms Changing

Post by Oozz »

Well, I had to come off Mirapex because it was becoming inconsistent and symptoms were bleeding through. Now that I’m washing out, it’s clear to see that my symptoms have gotten worse as a result of the medication. I was only on it for 3 months so I’m hoping it goes back to normal.

Frunobulax
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Re: Location of RLS Symptoms Changing

Post by Frunobulax »

XenMan wrote:
Thu Jun 18, 2020 9:48 pm
Frunobulax wrote:
Wed Jun 17, 2020 3:28 am

But I do believe that organic, non-GMO food is more healthy (if it's truly organic) as industrial food is cultivated or even genetically modified to contain more lectins and other antinutrients.
However, it is a requirement in most developed countries that pesticides used in agriculture breakdown before retail sale. There is also no clear reason as to why, despite numerous studies, that show that a large amount and variety of plant material in the diet has real demonstrated health benefits. Microbiome improvement has the best evidence, followed by vitamins and minerals, and phenols being more suggested.

But studies on vitamin and mineral supplements, and anti-oxidants, show no benefit in a ‘more is better’ approach. Also the impact of phenols is less than conclusive.
True. My approach however is different. I do believe that healthy food is what our hunter-and-gatherer ancestors ate. That doesn't mean the other food is automatically unhealthy, it just means that it is possible that the "modern" ingredients, perhaps in certain combinations, contribute to my health issues. And while studies concerning singular ingredients may be helpful to understand medical mechanisms, I'm still in the " if you haven't made progress, try organic paleo" camp. And here's why:

If you are fine, then apparently whatever you're eating is good for you, no need to change something. If you have medical issues (as I have), you might want to test the theory that some things in the food you're eating may be responsible. So try specialized diets. But if those fail (I have gone gluten free, low fodmap, low carb, low oxalate and more, and they do help many people), another possible approach is to cut out as many of these "modern" things as possible at the same time. If this doesn't help either, chances are the issues are not with nutrition. But for me, I've seen marked improvement since going (nearly) paleo about a year ago.

Now if I eliminated 100 things from my diet and I see improvement, it's possible that 95 of them were perfectly fine. But if I can't tell which the 5 critical things are, I may stick with cutting out all 100.

Of course, this all hinges on the assumptions that a "paleo" diet is healthy. And this is just my working theory, I can't prove in any way that this is correct. But almost all the research I've read in the last years seems to support that, and I will act on it until I find evidence to the contrary. BTW "paleo" isn't a single diet (as sometimes pictured on websites that want to sell you books, programs and food), but more a wide range of diets according to studies of several hundred hunter-and-gatherer civilizations, but they share some common traits like little grains, usually only seasonal carbs, usually high animal based content, and of course no artificial contents like emulsifiers and so on.

XenMan
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Re: Location of RLS Symptoms Changing

Post by XenMan »

Frunobulax wrote:
Thu Jul 09, 2020 11:52 am

Of course, this all hinges on the assumptions that a "paleo" diet is healthy.
You may find microbiome changes from high meat consumption worth researching, as well as chances of diabetes type 2; which is still not well understood. Carnitine is a concern, this was just the top of a quick search:

"Dietary supplementation of TMAO, or either carnitine or choline in mice with intact intestinal microbiota, significantly reduced reverse cholesterol transport in vivo. Intestinal microbiota may thus participate in the well-established link between increased red meat consumption and CVD risk."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3650111/

This is a news article, but supports papers I have read on paleo.

https://www.medicalnewstoday.com/articles/325832

Meat is a bit of 'cult' for some people, so it is difficult to find any rational discussions online. I was described once as a 'flat earther' for even raising concerns, so I usually don't. Research has shown low meat consumption under 60, and high consumption over 60 as optimal for health in population studies, which is not ideal but indicative. Latest I read indicated moderate consumption isn't as bad as initially thought, but there are clear mechanisms of concern. mTOR activation is another concern which is why under 60 it isn't the best, but over 60 you require more protein to maintain muscle mass which is proportionate to mortality.

I begrudgingly eat a small amount of meat due to nutritional means, but get my main protein from whey protein when required for muscle mass.

Off course all this is based on probabilities, with chances increased and not guaranteed. Nutritional scientists are not much better than naturopaths as you can always find a paper to show they are mostly wrong with general recommendations. So it comes down to finding what works best for you with the best knowledge available.

It isn't easy in any way.

badnights
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Re: Location of RLS Symptoms Changing

Post by badnights »

Oozz wrote:
Wed Jul 08, 2020 7:57 pm
Well, I had to come off Mirapex because it was becoming inconsistent and symptoms were bleeding through. Now that I’m washing out, it’s clear to see that my symptoms have gotten worse as a result of the medication. I was only on it for 3 months so I’m hoping it goes back to normal.
I think you have a good chance of getting back to normal. I think most people do, that's why it was assumed at first that everyone went back to baseline after augmentation. Here's hoping, anyway!
Beth - Wishing you a restful sleep tonight
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Frunobulax
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Re: Location of RLS Symptoms Changing

Post by Frunobulax »

XenMan wrote:
Thu Jul 09, 2020 9:28 pm
Frunobulax wrote:
Thu Jul 09, 2020 11:52 am
Of course, this all hinges on the assumptions that a "paleo" diet is healthy.
Meat is a bit of 'cult' for some people, so it is difficult to find any rational discussions online. I was described once as a 'flat earther' for even raising concerns, so I usually don't. Research has shown low meat consumption under 60, and high consumption over 60 as optimal for health in population studies, which is not ideal but indicative. Latest I read indicated moderate consumption isn't as bad as initially thought, but there are clear mechanisms of concern. mTOR activation is another concern which is why under 60 it isn't the best, but over 60 you require more protein to maintain muscle mass which is proportionate to mortality.
I can't easily describe my personal nutrition. Paleo is just the term that comes closest... Many people think paleo or low carb is automatically high meat, but that's not true. I do eat meat, but total protein in my diet accounts for 25% of the calories or less, including eggs, dairy and vegetable protein. Vegetables, salad and such are staples in my diet. mTOR is a whole different subject, as it's also affected by fasting (I do intermittent fasting, often 20/4 or 22/2, and sometimes longer fasts). So I agree eating a lot of meat without fasting is probably bad, but what happens if you eat high meat but fast a lot? Many open questions there.

Also, meat behaves very different depending on the baseline diet. For example, if you eat western (high carb), meat alone is fairly insulinogenic. If someone eats a meal of only meat and fat (say a sirloin steak), you'll see an insulin spike after meat consumption not unlike after carb consumption. But if people have been on a very low carb diet long enough they don't show this spike, meat causes almost no increase in insulin. So if we ask questions like "what about mTOR", there's always the second question "and what happens if the baseline diet is low carb?" that is usually not answered...
XenMan wrote:
Thu Jul 09, 2020 9:28 pm
It isn't easy in any way.
No, it's not. It's very, very frustrating that we have to "believe" or "choose" at some point, because that's the only thing you can do, unless you want to dig deep into research yourself. There is a lot of contradicting research, and a big issue is that nutritional science hasn't agreed on what "healthy" means. Just some examples:
  • Microbiome diversity seems to be a good thing, but the microbiome can change a lot in just a matter of days.
  • Long-term effects like probability of T2D is hard to establish because we need long term studies, and animal studies are not always representative for humans. (For example, rats get fat whenever you raise the fat content in the diet. Humans typically show the opposite effect, if the carb content is low enough. Lots of concerns about high-fat diets come from rat or mice studies which are very suspect.)
  • A lot of nutritional studies assume "lower cholesterol=better", which is very much a hot topic right now. Newer studies on LDL seem to indicate that only a subfraction of LDL is bad, namely oxLDL and VLDL. HDL is established to be healty in any case, and the remaining LDL subfractions are a matter of debate, possibly beneficial. Studies like MRFIT indicate that lowering LDL via a low-fat (or low saturated fat) diets increases total mortality, precisely the opposite effect as expected. The reason is that a high fat will actually lower the levels of the "bad" subfractions, while the other subfractions can increase by a lot. Now, this casts major doubts on many established studies. If the hypothesis that lowering LDL is bad for us (and not good) is true, then our whole nutritional science framework comes crumbling down.
But so far we can't be sure of anything. IMO the best anyone can do is to know which topics are controversial :)

XenMan
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Re: Location of RLS Symptoms Changing

Post by XenMan »

Moderate volume and consumption of individual foods, combined with intermittent fasting is probably as good as a diet is going to get. The rest is personal preference and how the body reacts. I'm personally for high a fat diet, with certain vegetable oils high in omega 6 avoided, which is contrary to recommendations, but as you point out, not conclusive at this time.

Oozz
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Re: Location of RLS Symptoms Changing

Post by Oozz »

I have been off medication for several days and my RLS continues to change locations, from my right scapular, to my right shoulder and, now, to my left shoulder. I’m not currently on any diets either. Stress is low, as I’m on vacation.

I’m wondering if this has any meaning.

Yankiwi
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Re: Location of RLS Symptoms Changing

Post by Yankiwi »

Mine is in my calves and alternates throughout the night from one leg to the other. It's almost funny how I'll wake up with pain in one leg, walk, rub, stomp etc for an hour or two, go back to bed then wake up with it in the other leg.
Before starting iron tablets a few years ago it was starting to be present in the front of my forearms but after my iron levels were raised that disappeared.

badnights
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Re: Location of RLS Symptoms Changing

Post by badnights »

I have never heard any explanations for location of symptoms. I used to always have it in both legs (+/- arms), but recently I've been having it only in my left leg much of the time. Weird.
Beth - Wishing you a restful sleep tonight
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XenMan
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Re: Location of RLS Symptoms Changing

Post by XenMan »

badnights wrote:
Mon Sep 28, 2020 1:20 am
I have never heard any explanations for location of symptoms.
I can only speak from my own experiences which most don’t like, but against my better judgement, I will have another go.

As my RLS is from oxalates, symptoms occur when oxalates are broken down though exercise or general oxalate dumping. I have nerve and the corresponding muscle trigger points. It seems the oxalate leaves the nerves and makes them ‘unhappy’ and they activate the corresponding muscles, which then create the motor sensory discrepancy for symptoms to exist. I can press the nerves to stop symptoms or treat the muscles.

My symptoms move all over place with oxalate dumping with some easy, and others very difficult to treat.

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