SEVEN Common Myths About Restless Legs Syndrome

[dwimble]

NOTE FROM THE MODERATORS
This topic is currently locked at the request of the WED Foundation. The original post is written as if this were fact, when the WED Foundation believes some of this to be hypothesis and other of is not in line with current peer-reviewed research.


MYTH #1: RLS IS GENETIC

TRUTH: The "tendencies" that cause RLS are passed down from parent to child. These tendencies are VERY changeable. They are not hard-coded.

Epigenetics are the switches that turn these tendencies OFF or ON.

Science now knows with absolute certainty that genetics play a much smaller role than previously thought. Here's a quote from Newsweek magazine about the new exciting world of epigenetics.

"Roll over, Mendel. Watson and Crick. They are so your old man's version of DNA. And that big multibillion-dollar hullabaloo called the Human Genome Project? To some scientists, it's beginning to look like an expensive genetic floor pad for a much more intricate - and dynamic - tapestry of life that lies on top of it." - Newsweek Magazine, June 2009

Genetics determine certain traits that are passed on to children, such as hair color, the shape of the nose etc. (as we all learned in school) but beliefs, tendencies and conditions that are passed on are passed through what is called "epigenetics." These are the switches that determine how our genes are going to act.

For instance, if a parent was extremely negative, those negative switches would be already turned on in the child's genetic makeup, even before it was born. The child would have to take an action to change the switches to turn the positive genes on and the negative genes off.

In the case of RLS, the bad switches could be on because of diet, environment, and in a lot of cases, stress. This would create inflammation in the parent, and at some point in the child's life, sometimes very early. These switches would cause inflammation to build until actions were taken and changes were made.

Here's a quote from a 2012 study:

"Phenocopies in families with essential tremor and restless legs syndrome challenge Mendelian laws. Epigenetics might provide answers." Zimprich A. Parkinsonism Relat Disord. 2012 Jul;18(6):711-6.

"There is increasing evidence that epigenetic modifications, which refer to changes in gene expression without changes in DNA sequence, can be transmitted to the next generation. Moreover, epigenetic information can be transferred from one allele of a gene to the other allele of the same gene; if then inherited to the next generation, the offspring consequently presents phenotypic properties related to the untransmitted allele."

Note that if a parent had inflammatory tendencies in the way they lived their life, the inflammation could eventually manifest in the child in a number of ways. It could become RLS as well as hundreds of other inflammatory conditions including depression, ADHD, Parkinson's etc.

For an extensive look at epigenetics visit:
http://www.rlcure.com/epigenetics-and-r ... drome.html


MYTH #2:THERE ARE "TWO" TYPES OF RLS - PRIMARY AND SECONDARY

TRUTH: There is only ONE type of RLS. RLS is ALWAYS caused by inflammation, not by another condition.

Having chronic inflammation in your body is like spilling a coffee on your keyboard. Something unpleasant is going to happen, you're just not sure what.

In the now famous 2012 study by Dr. Leonard Weinstock titled "Restless Legs Syndrome: Theoretical Roles of Inflammatory and Immune Mechanisms" it was shown that 36 of the 41 RLS-associated conditions (88%) have been associated with inflammatory and/or immune changes.

According to the study "The fact that the majority of highly RLS associated conditions are also associated with inflammatory/immune changes suggests the possibility that RLS may be mediated or affected through these mechanisms."

Parkinson's, IBS, SIBO, Cancer or any of the other secondary conditions the study refers to do not cause RLS. Inflammation is causing BOTH of the conditions.

Keep in mind that inflammation can manifest as one condition, two conditions or more if it's not addressed.

You can read about the study at the website below, which also includes some additional data that shows why the results should have shown that 100% of the conditions are associated with inflammation.

http://www.rlcure.com/scientific-study- ... f-RLS.html


MYTH #3: IRON DEFICIENCY IS A PRIMARY CAUSE OF RLS

TRUTH: The inflammation causing the RLS also affects iron levels.

The medical text "Hyperkinetic Movement Disorders: Differential Diagnosis and Treatment" by Alberto Albanese and Joseph Jankovic (John Wiley & Sons, 2012) is a scholarly work written for pediatric and adult endocrinologists, orthopaedic surgeons, roentgenologists, workers in rheumatology clinics, geneticists, nutritionists and very specialized osteologists. The book is a collection of data and observations made through a variety of scientific studies.

Chapter 20 of the book focuses on Restless Legs Syndrome. On page 311, Arthur S. Walters M.D. of the Vanderbilt Department of Neurology is quoted.

"Most recently we have noted that RLS patients have an increased prevalence of Irritable Bowel Syndrome (IBS) and an increased prevalence of Small Intestinal Bacterial Overgrowth (SIBO) compared to controls. This led us to review the 40 or so secondary causes of RLS. Independent of RLS, the vast majority of these secondary causes are associated with either iron deficiency, SIBO or inflammatory/immune abnormalities.

This suggests that inflammation and immune attacks on the peripheral or central nervous system in RLS could be pathogenetic to RLS.

An alternative explanation is that inflammation may lead to iron deficiency which may in turn lead to RLS."

It is well known in the scientific community that inflammation can affect iron levels. Here are a couple examples:

"Influence of acute inflammation on iron and nutritional status indexes in older inpatients." MM Chiari et al. J Am Geriatr Soc. 1995 Jul;43(7):767-71.

"Patients with acute inflammation present altered iron status indexes that resemble those observed in the anemia of chronic disease."

"Interpretation of biochemical tests for iron deficiency: diagnostic difficulties related to limitations of individual tests." Frank Firkin, Director of Clinical Haematology; and Bryan Rush, Director of Laboratory Haematology, St Vincent's Hospital, Melbourne.

"Most cases of iron deficiency can be diagnosed with simple tests. The concentration of serum iron does not fall until the body's iron stores are exhausted. As the stores are depleted, the concentration of transferrin rises while the concentration of ferritin falls.

Caution is required when assessing patients with inflammatory disease as a low serum iron may not represent iron deficiency. These patients often have reduced concentrations of transferrin."



MYTH #4: RLS IS CAUSED BY AN IMBALANCE OF DOPAMINE LEVELS

TRUTH: The dopamine imbalance and the Restless Legs are BOTH caused by INFLAMMATION.

A dopamine imbalance can be caused by low iron levels or directly from inflammation as is stated in the following studies:

"CSF iron, ferritin and transferrin levels in restless legs syndrome." Soichi Mizuno et al. Department of Psychiatry, Shimane University School of Medicine, Shimane, Japan, February 2004.

"The results of this MRI study suggest that idiopathic RLS patients may have a dysfunction of dopamine production induced by the iron deficiency in a dopamine-related specific area of the brain, and support the iron-dopamine model of this syndrome.

"Iron deficiency alters expression of dopamine-related genes in the ventral midbrain in mice" L.C. Jellena et al. Neuroscience, Volume 252, 12 November 2013, Pages 13–23

"A clear link exists between iron deficiency (ID) and nigrostriatal dopamine malfunction. This link appears to play an important role in at least restless legs syndrome (RLS) if not several other neurological diseases."

"Iron deficiency alters dopamine uptake and response to L-DOPA injection in Sprague–Dawley rats." Laura E. Bianco1 et al. Journal of Neurochemistry, Volume 106, Issue 1, pages 205–215, July 2008.

"Iron deficiency (ID) disrupts brain dopamine (DA) and norepinephrine (NE) metabolism including functioning of monoamine transporters and receptors."

"Inflammation induces mitochondrial dysfunction and dopaminergic neurodegeneration in the nigrostriatal system." RL Hunter et al. Journal of Neurochemistry. 2007 Mar;100(5):1375-86.

"Evidence suggests that chronic inflammation, mitochondrial dysfunction, and oxidative stress play significant and perhaps synergistic roles in Parkinson's disease (PD), where the primary pathology is significant loss of the dopaminergic neurons in the substantia nigra."

"Systemic Infusion of Naloxone Reduces Degeneration of Rat Substantia Nigral Dopaminergic Neurons Induced by Intranigral Injection of Lipopolysaccharide." Bin Liu et al. The Journal of Pharmcology and Experimental Therapeutics Vol. 295, No. 1, JPET 295:125-132, (2000).

"A massive degeneration of dopamine-containing neurons in the substantia nigra (SN) in the midbrain is characteristic of Parkinson's disease. Inflammation in the brain has long been speculated to play a role in the pathogenesis of this neurological disorder."


MYTH #5: RESTLESS LEGS SYNDROME IS A DISEASE

TRUTH: RLS is a BIOMARKER indicating that your body is dangerously INFLAMED and that ACTIONS must be taken to prevent further damage.

RLS is now officially Willis-Ekbom Disease (WED). The name change occurred a few years ago to give it more credibility, but the truth is it's an uninspiring name and is rarely used by anyone outside of RLS.org.

The body is an incredibly complex machine and one of its survival mechanisms is its ability to send our warning signals when something is not right underneath the hood.

For example, frequent headaches indicate that something beneath the surface needs to be attended to, whether it be stress, lifestyle, a tumor, inflammation or something else.

In the case of RLS, your body is telling you that you have too much inflammation and that it must be dealt with. If no changes are made, the inflammation will increase and lead to additional conditions.

A nationally-recognized sleep expert has published an editorial describing Restless Legs Syndrome (RLS) as a possible biomarker for underlying disease. The editorial appears in the March 5, 2014 issue of Neurology the medical journal of the American Academy of Neurology and was authored by Boston Medical Center neurologist Sanford H. Auerbach, MD.

Auerbach suggests that restless leg syndrome is a meaningful biomarker for serious disease, and that RLS screening may become more common as a tool for primary care providers to identify patients at risk.


Find out more here:

http://medicalxpress.com/news/2014-03-r ... igger.html
http://www.rlcure.com/restless-legs-syn ... sease.html


MYTH #6: RLS IS OFTEN CAUSED BY PREGNANCY

TRUTH: The RLS is caused by the HIGHER presence of INFLAMMATION in pregnant women.

As the studies below demonstrate, inflammation levels tend to increase in pregnant women.

“Vaginal cytokines in normal pregnancy.” G. Gilbert et al. American Journal of Obstetrics and Gynecology, vol. 189, no. 5, pp. 1433–1438, 2003.

“A significant increase of proinflammatory cytokines (IL-6 and IL-8) is produced in the third trimester. These cytokines act as chemoattractants of polymorphonuclear leukocytes stimulating the expression of prostaglandins in response to delivery preparation.”

“C Reactive Protein levels are elevated in the Third Trimester in Preeclamptic pregnant Women.” Zaima Ali et al. Dept. of Physiology, Lahore Medical and Dental College, Department of Obstetrics and Gynecology, Jinnah Hospital, Lahore.

“Pregnancy is a complex process which leads to a number of systemic changes. During normal pregnancy all these changes are very well regulated. Preeclampsia is a very common disorder of pregnancy and is characterized by hypertension and proteinuria that begins at more than 20 weeks of gestation. Poor placentation with inadequate cytotrophoblast invasion results in widespread maternal endothelial dysfunction. There is increasing evidence that preeclampsia is accompanied by exaggerated maternal systemic inflammatory response to this poor placentation.”

“Prokineticin-1: A Novel Mediator of the Inflammatory Response in Third-Trimester Human Placenta.“ Fiona C. Denison et al. Endocrinology. 2008 July; 149(7): 3470–3477. doi: 10.1210/en.2007-1695

“Prokineticin-1 (PK1) is a recently described protein with a wide range of functions, including tissue-specific angiogenesis, modulation of inflammatory responses, and regulation of hemopoiesis. The aim of this study was to investigate the localization and expression of PK1 and PK receptor-1 (PKR1), their signaling pathways, and the effect of PK1 on expression of the inflammatory mediators cyclooxygenase (COX)-2 and IL-8 in third-trimester placenta.

Our study demonstrates that PK1 and PKR1 are highly expressed in third-trimester placenta with PK1 up-regulating expression of IL-8 and COX-2 potentially via activation of PKR1 and cross-talk with EGFR. The latter finding is supported by double-immunofluorescent immunohistochemistry studies that show that PKR1 colocalizes with IL-8 and COX-2 in placenta. Together, these data suggest that PK1 may be a novel paracrine mediator of the inflammatory response in third-trimester placenta.”


MYTH #7: AGING TENDS TO CAUSE RLS

TRUTH: The RLS is caused by the HIGHER presence of INFLAMMATION in elderly people.

As the studies below demonstrate, inflammation levels tend to be higher in the elderly population.

"Inflammation in aging: cause, effect, or both?" NS Jenny. Discov Med. 2012 Jun;13(73):451-60.

"Aging is a progressive degenerative process tightly integrated with inflammation."

"Chronic Low-Grade Inflammation in Elderly Persons Is Associated with Altered Tryptophan and Tyrosine Metabolism: Role in Neuropsychiatric Symptoms." L. Capuron et al. Biol Psychiatry. 2011 Jan 28.

"Our findings show that chronic low-grade inflammation in aging is associated with alterations in enzymatic pathways involved in monoamine metabolism and suggest that these alterations might participate in the pathophysiology of neuropsychiatric symptoms in elderly persons."

"Age-related alterations in retinal neurovascular and inflammatory transcripts." CA Van Kirk et al. Mol Vis. 2011;17:1261-74.

"The commonalities in retinal age-related and diabetes-induced molecular alterations provide support for the hypothesis that diabetes and aging engage some common para-inflammatory processes."

[ViewsAskew]

I am posting this as a member of this board and as someone with WED/RLS, not as a moderator.

To all who read this, the above post is the author's perspective and belief, not yet proven directly by mainstream science. It may or may not be validated in the future. My personal belief is that this is not the cause of WED. It may contribute in SOME cases, but it is not the only cause - it makes no scientific sense given that it ignores much of the other scientifically proven data that has been identified. The author of this refuses to respond to me when I say that I've tried ALL of the options related to inflammation and they have not helped my WED one iota. I still work to manage inflammation every day (because I have a knee injury), from diet to exercise to supplements. If this helped WED in all cases, I'd be WED free.

[dwimble]

i mentioned before to you that because you haven't found the source of your inflammation yet, it doesn't mean you don't have it.

Your knee inflammation is different than chronic inflammation.

Your inflammation could be caused by stress, diet, beliefs, environment, epigenetics, poor digestive system, who knows.

All the information I listed above has modern science backing it up. I've posted the links and studies for anyone who wants to take a closer look.

If you don't believe something, be specific about why you don't, and post some scientific proof to show why it's incorrect. That would be helpful to anyone reading your comments.

[jul2873]

Dwimble, I think we all understand that you truly believe inflammation is the root cause of all cases of WED, and that nothing anyone says will convince you otherwise. And you certainly have the right to make your case here. And you've done that, a number of times.

But here is my issue. If you're wrong--and I think you are wrong about it being the root cause of all WED--then your continual insistence on it is sending the message that we are all responsible for our WED, and that if we'd just to whatever it takes to manage inflammation (which many of us don't even seem to have) we could get better. In other words, suffering from WED is our fault.

It seems to me that every time someone posits a simple explanation for a complicated disease--and the explanation involves blaming the sufferer, or the sufferer's parents--that person is wrong. We know that ulcers are not caused by people not being able to manage stress. They are caused by bacteria. We know that autism is not caused by "refrigerator mothers." We don't know what causes it, only that it seems to have little or nothing to do with how a baby is mothered. We know that depression is a complicated condition that is not caused by someone who just needs to get up and pull themselves together.

We do know that inflammation is involved in many diseases--heart disease for one thing. Yet I have never seen any correlation between WED and heart disease. So many people have high levels of inflammation and don't have WED. I have a low level of inflammation and do have WED. So I get frustrated, and--okay--angry--when someone keeps telling me that if I'd just do this or that to lower inflammation--that I don't even have--my WED would get better.

You may be right, that inflammation causes some cases, maybe yours. I'm happy for you if doing anti-inflammatory things has made you better. But it hasn't made me better. And so I ask you please, please try to see things in a more complex way. And stop trying to spread guilt around.

[dwimble]

STUDIES LINKING RLS AND HEART DISEASE

"Restless Legs Linked to CHD: New Prospective Data" by Sue Hughes, September 14, 2012

Restless-legs syndrome of at least three years' duration is associated with an increased risk of developing coronary heart disease, according to new prospective data from the Nurses' Health Study.

The study, led by Dr Yanping Li (Brigham and Women's Hospital, Boston, MA), was published online in Circulation on September 11, 2012.

Li commented to heartwire : "Several cross-sectional studies have found an association between restless-legs syndrome and heart disease, but until now this hasn’t been confirmed in prospective studies. Now we have shown this association to be true also in a prospective study, but it does appear to be dependent on the duration of symptoms."

Li and colleagues wondered whether a short period of restless legs would not be enough to show any association, whereas long-term symptoms might be more strongly linked to heart disease. And this is exactly what they found.

http://www.medscape.com/viewarticle/770960



"Prevalence and correlates of restless legs syndrome symptoms in the Wisconsin Sleep Cohort." Winkelman JW, Finn L, Young T. Sleep Med. 2006;7:545–52.
"Associations of restless legs syndrome and cardiovascular disease in the Sleep Heart Health Study." Winkelman JW, Shahar E, Sharief I, Gottlieb DJ. Neurology. 2008;70:35–42.

"Winkelman et al. performed 2 separate analyses of data from large databases. An initial analysis of 2821 individuals from the Wisconsin Sleep Cohort noted cardiovascular disease to be more prevalent in individuals with daily RLS, compared with those without RLS (OR = 2.58, 95% CI 1.38-4.84)."



"Prevalence of restless legs syndrome among men aged 18 to 64 years: an association with somatic disease and neuropsychiatric symptoms." Ulfberg J, Nystrom B, Carter N, Edling C. Mov Disord. 2001;16:1159–63.

"In a study by Ulfberg et al., 4000 men aged 18 to 64 years in central Sweden were mailed questionnaires that adhered to the 4 criteria for RLS developed by the International RLS Study Group. The prevalence of RLS was 5.8% in this sample after adjusting for eligibility, incomplete questionnaires, and nonresponder rates. RLS sufferers were more likely to report hypertension (odds ratio [OR] 1.5; 95% confidence interval [CI] 0.9-2.4) and heart problems (OR 2.5; 95% CI 1.4-4.3)."



"Association of restless legs syndrome and cardiovascular disease in the Sleep Heart Health Study." Winkelman JW, Shahar E, Sharief I, Gottlieb DJ. Neurology. 2008 Jan 1;70(1):35-42.

"We evaluated the cross-sectional association between restless legs syndrome (RLS) and prevalent cardiovascular disease (CVD) in a large community-based sample of middle-aged and elderly subjects.

This is a cross-sectional observational study of 1,559 men and 1,874 women (mean age of 67.9 years) who were enrolled in the Sleep Heart Health Study, a community-based study of the cardiovascular consequences of sleep-disordered breathing.

RLS was present in 6.8% of women (n = 128) and 3.3% of men (n = 51). After adjustment for age, sex, race, body mass index, diabetes mellitus, systolic blood pressure, antihypertensive medication use, total:high-density lipoprotein cholesterol ratio, and smoking history, the ORs for CAD were 2.05 (95% CI 1.38 to 3.04) and for CVD were 2.07 (1.43 to 3.00) for subjects with RLS compared to those without RLS. The associations of RLS with CAD and CVD were stronger in those with RLS symptoms at least 16 times per month and were stronger in those with severe than in those with moderately bothersome symptoms.

Restless legs syndrome (RLS) is associated with prevalent coronary artery disease and cardiovascular disease. This association appears stronger in those with greater frequency or severity of RLS symptoms."


"Review of the Relationship of Restless Legs Syndrome and Periodic Limb Movements in Sleep to Hypertension, Heart Disease, and Stroke." Arthur S. Walters, MD1 and David B. Rye, MD, PhD2. Sleep. 2009 May 1; 32(5): 589–597.

"Evidence is reviewed documenting an intimate relationship among restless legs syndrome (RLS) / periodic limb movements in sleep (PLMS) and hypertension and cardiovascular and cerebrovascular disease.

The results of epidemiologic studies suggest a possible relationship between self-reported RLS symptoms and daytime hypertension and are more consistent in pointing to a relationship between RLS and cardiovascular disease."

[Frunobulax]

Dwimble, there are a lot of good reasons why the connection between WED and inflammation should be explored in a scientific setting. And even though I strongly doubt that inflammation is the cause for _all_ WED, it may be responsible for a significant portion. Who knows?

However, the way you're writing this causes me to react strongly negative to your claims. I have a "shaman" relative who claims that she is the only one in the family understanding something about medicine, that all pharmacy is evil, and that every disease can be traced to energy and magnetic fields. Incidentally, she spends thousands of dollars per year on "natural remedies", surprisingly expensive nutritional supplements and "healing devices" that are really useless junk. Now, she has given me a lot of pamphlets over time, and they all share a few common traits:
(1) The books and pamphlets mix sound, known scientific data with wild, unsupported claims - and sound very convincing because most people don't notice where the established facts end and the myths start.
(2) There are no scientific studies supporting these claims, not even any statistical data (forget about double-blind placebo). Only case reports support the claims.
(3) These people claim in an almost religious way that they are right, and everybody else is wrong.
Some of these people are simply nut cases, others are clever businessmen earning a LOT of money.

I suggest that you compile a document listing the key arguments for your inflammation theory, and contact WED researchers (and possibly the foundation) in order to raise their interest in this connection. I also strongly suggest that you try to distinguish yourself in style and content from the rambling nut cases and businessmen robbing money from my relative.

[dwimble]

The studies and scientists I quote above are legitimate scientists. I'm not sure where you're getting the shaman vibe from?

And I tried to do something with RLS.org for several years. I hit a wall right away, and never made any inroads. No one ever got back to me except for Georgie, and I respect her for that. I see that she's no longer with the Foundation.

Anyway, the point of my posting here is to give people some options to think about. I'm not telling anyone to do anything.

Considering the alternative is to be on medication for the rest of your life, I'm not sure why there's such a big flack about it.

[dwimble]

Hi Frunobulax

I forgot to mention that my entire website consists of scientific evidence that shows the strong link between RLS and inflammation.

There's also several testimonials from people that successfully broke free of their RLS, and a there's a new section with FULL stories written by people that had RLS and became free.

http://www.rlcure.com

There are some great success stories in the works that I'll be posting soon, including a heartbreaking story of an infant that had RLS, and is now doing fine.

There's nothing that inspires like someone's success story.

As as you can see from my social media websites, I'm doing everything humanly possible to get the word out.

https://www.facebook.com/AbsoluteCureForRLS?sk=wall
http://therestlesslegsblog.wordpress.com
http://www.pinterest.com/davidwimble5/r ... -remedies/
https://plus.google.com/111517705116717316046/posts
https://twitter.com/RLS_FREE

I wish I could do more, but the truth is, I run my own music business, and it eats up my entire week.