Dr.

[drrjyadav]

I am R.J.Yadav specialist in bone and joint diseases and also radiologist( X-Ray,USG,CT,MRI,color doppler). At the moment I am not suffering from any RLS.I am quite fit for my age. I have been seeing lots of cases of backache and sciatica and osteomalacia etc but I don't remember having seen any case of RLS in recent years,I do have some cases of " fibromyalgia" and if there is forum on this condition I may join the discussion.

[Hidden]

Would you see any one for RLS in you line of work..? I am sure there is a forum for fibro on HealthUnlocked.

[drrjyadav in reply to Hidden]

Thanks for your query, I am sorry I have probably yet to see a typical case of RLS . Perhaps it is not so common as it is in UK or the countries with cold climate.

I do have few cases of "fibromyalgia " under my care.Fibromyalgia is also a condition as difficult as RLS's to get cured.But I think as in fibromyalgia in RLS too psychology plays its part and doctor -patient relation is a major deciding factor for relief.

[Pippins2 in reply to drrjyadav]

As a doctor I would have expected you to know that RLS is not Psychological in any way! RLS is a Neurological disorder .Therefore you have learnt something new already.

[nightdancer in reply to drrjyadav]

NIce to meet you, Dr, but excuse me, the only psychological thing about RLS and Fibromyalgia is that the pain and severe sleep deprivation can make you feel down, depressed, no quality of life, etc. But, neither are psychological in nature! RLS is neurological, the genes for it were discovered and named in 2004 and 2007. NOW, if it were psychological, there would be no genetic connection in RLS, and that is 70% of ALL RLS. 5-10% of the world's population has RLS, and those are only the ones we know about. They did not just "make up" the genes. RLS is more prevalent in the UK, Iceland and the US. There is quite a bit in India, it falls off in Asia. Australia and New Zealand also have a high RLS population. so not all cold areas, by any means. I have many people from the Phillipines, also, for my groups that I have been managing for over 20 yrs. God help any doctor who tells me that RLS is psychological........just saying that would not be fun discussion.

[Hidden in reply to drrjyadav]

Are you sure you are a doctor..? Maybe you are, but definately not one that knows anything about RLS. Firstly RLS is neurological, and secondly there is NO cure for RLS. What country do you live in.?

You are going to upset quite a few people on this forum with your talk of RLS being psychological.

[sanza in reply to drrjyadav]

ncbi.nlm.nih.gov/pubmed/254...

[Hidden in reply to sanza]

Here's an article from the Mayo Clinic about gut microbiome. The Mayo Clinic believes that what is happening with our gut microbiome is similar to the beginning of the "space program." The possibilities for complete cures for many illnesses are limitless according to the Mayo Clinic. I am anxiously awaiting the results of fecal transplants on Parkinson's patients discussed in another article.

mayoclinic.org/medical-prof...

[nightdancer]

oh, and you can TREAT Fibro and/or RLS, but there is nothing close to anything that will cure them. not in this lifetime, anyway.

[sanza in reply to nightdancer]

its funny you say that because you are ovbiously completely oblivious to the connection between the gut and these conditions. Like most doctors you are completely unaware of the research that is being carried out at the moment . How about you take the time to keep on top of research and keep an open mind before making such statements. When it comes to science and medicine, the word ''no cure'' is the most closed minded thing you can say

[sanza in reply to sanza]

Read this- ncbi.nlm.nih.gov/pubmed/254...

[Hidden in reply to sanza]

My RLS, has nothing to do with my gut. And i stand by what i have said. There is NO cure for RLS. Maybe in the future, but not now.

[Hidden in reply to sanza]

Here's a fairly recent article that confirms that there is nothing more than a "possible" genetic component to RLS.

nytimes.com/health/guides/d...

[nightdancer in reply to Hidden]

The studies I have seen say differently. And, when 90% of my family has RLS, and the genes have been discovered and named, and the International RLS Study Group, made up of international experts on RLS say so, that is good enough for me. I know many families who have multiple cases of RLS, so I am still quoting from the experts who are the most active in RLS research that RLS is genetic in 70% of the cases, called Primary RLS. rlshelp.org and IRLSSG.org

[nightdancer in reply to Hidden]

Well the NY Times thing is quite comprehensive. Funny how you picked out the word "might" out of all of that. They name the genomes, and some of the other references go back to 1997-2008. I have personally met 3 of the doctors who contributed to this at the Boston RLS conference in 2009 by the US RLS Foundation. Dr. Winkelmann is a professor at Harvard, in charge of the sleep clinic, works also at Boston General, etc etc. Would suggest you read one of his books. it may help to "unconfused you". But, I totally disagree to the part where they start talking about nocturnal leg cramps. Thankfully they said, leg cramps are NOT part of RLS! phew! on that one. However, comparing RLS to leg cramps, and saying neither have serious consequences is crap. RLS causes severe sleep deprivation, which in turn leads to high blood pressure, sleepy driving, severe depression, panic attacks, generalized anxiety. I object to them linking anxiety to being a "cause" of RLS. It is the other way around, in my humble opinion. I was never depressed one it until I started losing so much sleep. When I see every day in MY groups that someone is suicidal or wants to seriously cut their legs off, that is SERIOUS consequences. I have done several suicide watches in MY 20 yrs of managing groups. You cannot just pick out the things you like from an article and say it is so. This is really comprehensive, and is not a bad article at all, but out of all that you picked up on the word "might". So, if this is all you got, this is nothing new, thank you. And they do say it has genetic components. I am done with this foolishness for today. WE can do this til the cows come home, and everyone has their own opinions, and use different references. In the end, I always go back to the doctors here that I have met and talked to for the last 20 yrs who ARE the researchers on the front lines for this insidious disease. I think we can ALL agree on one thing, RLS SUCKS.

[sanza in reply to nightdancer]

The doctors you speak to yes are familiar with current treatment options and are the first to know when something new and 100% proven becomes available, like all doctors they are concerned with giving the best treatment possible.

Now, my point is, that when treatment options are still in research, that means in the labs, that means by the scientists and undergoing a long road of trials etc, this information will not be available to doctors because for something to be practiced it needs to get the all clear.

Somebody mentioned there is no cure for RLS and not in this lifetime. The research being carried out on the effect of the gut on a wide range of medical conditions will drastically change how disease is managed over the next few years. The gut may not be the cause for some people, but for some others it certainly will.

The genetic component of RLS yes is true, but there is an area of research on something called epigenetics, which states that our bodies arent controlled by our genes, but rather there are a wide range of factors that determine whether a gene you have actually gets turned on or off. If you dont believe me please look it up.

The gut, for some people with RLS, can be the triggering factor. The effect of the gut on health is such a new concept, yet if you look up pub med and type in gut-autoimmune, gut-allergies, gut-fibromyalgia, gut-RLS you will find many papers.

As I already said it is not the case for everyone but it will be an answer for some people and the sooner the research is completed the better.

I am a healthcare professional involved in research on the gut, so please people, look it up!!

(long comment I know but this information will be very useful for some people)

[Hidden in reply to sanza]

And here's an article confirming the study (mentioned in my previous post) that found 100% of patients with fibromyalgia also had SIBO.

bodyecology.com/articles/th...

[nightdancer in reply to Hidden]

bodyecology is a site that sells things, so that reference is out for me. I like web sites with NO agenda except factual information. Thanks, anyway. Will look at the rest of links, in fairness, though. By the way, how many screen names have you had in the last 2 years, Sherry75. Why do you keep changing it? This is like the 7th or 8th one. What is the point. We always know it is you, because your message never changes except for your screen name. One reason why I do not like screen names. I lie to know who I am talking to.

[sanza in reply to nightdancer]

brief overview- ncbi.nlm.nih.gov/pubmed/251...

[Hidden in reply to sanza]

This link talks about fibro and gut issues, I think you have posted this to the wrong forum, This forum is for RLS.

[sanza in reply to Hidden]

I am well aware of that, I posted that article because the underlying gut issues are similar for many conditions and this article in particular explains briefly how gut problems can contribute to chronic illness- which will be similar for both fibromyalgia and restless legs as they often go hand in hand. I am posting these papers to highlight the fact that there is still a lot we dont know.

People can either take this information on board or leave it, but when it comes to the gut, the research is there, the information is there, its just a matter of doing some reading. And as ive already said, it wont be the answer for everybody, but for some people it will be.

[Hidden in reply to sanza]

Here's a short summary on fecal transplant and Parkinson's patients:

Autoimmune and neurologic conditions[edit]

The therapeutic potential of FMT in non-gastroenterologic conditions, including autoimmune disorders,[11] neurological conditions,[12] obesity, metabolic syndrome and diabetes,[13] multiple sclerosis,[12] and Parkinson's disease[14] are now being explored. As of May 2008, studies had shown that FMT can have a positive effect on devastating neurological diseases such as Parkinson's disease.[14] While Dr. Thomas Borody was experimenting with patients who were afflicted by both CDI and Parkinson's disease, he realized that after fecal therapy the symptoms of Parkinson's in his patients began to decrease; some to the point that the Parkinson's could not be detected by other neurologists. The hypothesis for future studies is that the fluctuation in the body's microbiome done by FMT can also be recreated by adding anti–Clostridium-difficile antibodies to the patient's body a technique intended to be used in Borody's future case studies involving Parkinson's disease.[13]

[nightdancer in reply to Hidden]

So far your links have been on Fibro and Parkinson's. Where is there RLS stuff? just sayin..............still looking though to see if you actually posted anything about RLS yet, Sherry75.

[Hidden in reply to sanza]

Hi Sanza. I'm with you. I just completed a lecture series on the gut actually gut microbiota. They influence everything. You could probably take the word gene and replace it with microbes. I've been reading about it for 20 years now. A day does not go by that an article about micro-organisms isn't published. Talk about parallel universes, that's it.

People don't realize that you get your gut microbiome from your parents, starting with your mother's vaginal canal all the way to your parents and siblings skin. All of which are heavily colonized. So RLS may run in families because so do gut microbes. Researchers are moving away from genes and onto environmental factors/triggers and the gut. I just laugh when people say RLS is genetic. Six genes were discovered that some RLS patients seem to have in common. I think four have fallen by the way side. One study showed that among a group of people with primary RLS that 50% had the one gene that they believe may be "the" gene. None of the six genes have anything to do with dopamine or iron management, the mostly likely causes of RLS. Despite these facts, some people run with that finding and say RLS is genetic. Not me. When you get to 100% call me. By the way, one study showed that 100% of people with doctor diagnosed fibromyalgia had SIBO. Tay Sachs disease and sickle cell anemia are examples of truly genetic diseases.

In the last decade they have discovered that allergies, obesity and type II diabetes have a genetic component. So what??? So what if RLS has a genetic component? Like you said, it doesn't mean there's nothing you can do about it. Having a genetic component means a pre-disposition. Obesity and type 2 diabetes are completely "curable." So is RLS. Curable meaning you are symptom free without the use of mind altering, body altering, prescription drugs. Will you always have a genetic pre-disposition - probably. Will you suffer with symptoms - not if you work at it.

So Sanza, what do you suggest for the treatment of RLS? Now that Dr. RJ has been scared off by the brain trust on here.

[Hidden in reply to Hidden]

The good doctor didnt have RLS, didnt know anything about RLS. Was it seems only interested in fibro. I expect he has now joined the fibro forum. Dont start your usual member slagging off yet again. Which happens every time you come back on here.

[nightdancer in reply to Hidden]

precisely, Elisse. Things go pretty smoothly over here until Sherry75 shows up, or whatever name she may use next time. Terraverde, Mojave, etc. (have forgotten the other FIVE screen names, but I do have then written down) There is NO reason for someone to have to keep changing their screen name. Not like we cannot tell who they are.

[nightdancer in reply to Hidden]

never said there is nothing we can do about it. FYI, the researchers for RLS are getting away from the dopamine and the ferritin thing, too. RLS CAN be treated, and pretty successfully for some people. I found my right combo of meds, and only have an "attack" about once a month. But, there is no cure, as of yet. Do you think we do not want a cure?? I have been doing this for 20 yrs also, and it is not a contest here. Nobody knows anything for sure, ultimately. But, the genetic component does exist, or if you wish to say microbes, go for it. Depends on what study you read, Sherry75. I can find 10 studies that say 10 different things. So, while I appreciate your "research capabilities" I would appreciate it not getting shoved down our throats.

[nightdancer in reply to Hidden]

The doctor said he was going to join the Fibro forum. By the way, he was not "scared off" and let's not do name calling here. That is just sooooooo grade school. The idea was that RLS is not psychological and even YOU, Sherry75, have to admit that one. That is what started he whole thing, not anything else. RLS is NOT psychological, whether it is genetics or microbes or taking the wrong classes of meds, or eating the wrong foods, etc etc. it was the word "psychological" and nothing else that caught my eye. pretty sure the doctor can stand up for himself.

[nightdancer in reply to sanza]

I know very well what is going on in RLS research!

[nightdancer]

Oh, and you, Dr, probably would not see many cases of RLS, since you are not a neurologist or a sleep doctor. Those are the doctors who take care of neurological diseases and sleep disorders, and RLS is movement related sleep disorder. There is a huge group for Fibromyalgia on this web site.

[nightdancer]

Are you from India? Did a little looking around and figured you were from a warm climate. I have over a dozen people from India with severe RLS in my smallest RLS group online. So, if I have 10, there must be many more out there searching for help, since the population of India is a billion.

[Hidden]

Dr. R.J. you are right!!!! Only 1% of indian patients with renal failure have RLS versus up to 70% in other countries. I think it's all that turmeric you guys consume, it's like a vaccination. Keep up the good work and please investigate why it is that RLS is so low in India?

Ren Fail. 2004 Jan;26(1):69-72.

Low prevalence of restless legs syndrome in patients with advanced chronic renal failure in the Indian population: a case controlled study.

Bhowmik D1, Bhatia M, Tiwari S, Mahajan S, Gupta S, Agarwal SK, Dash SC.

Abstract

BACKGROUND:

Restless legs syndrome (RLS) is reported to occur in 20-70% of uremic patients. There is no study from India regarding the prevalence of RLS in chronic renal failure (CRF) patients. Studies from other Asian countries have shown a much lower prevalence compared to the West. This study investigated the prevalence of RLS in patients with advanced CRF in the Indian population.

PATIENTS AND METHODS:

Sixty-five CRF patients and 99 controls were evaluated using a predesigned standard questionnaire. The control group consisted of prospective renal donors.

RESULTS:

The mean age of our patients was 42.4 +/- 14.9 years as compared to 43.7 +/- 11.2 years (p = NS). The distribution of cause of CRF was as follows: diabetes 38.5%, hypertension 13.9%, chronic interstitial nephritis 29.2% and chronic glomerulonephritis 18.4%. RLS was present in 1 patient (1.5%) and none of the controls.

CONCLUSION:

The prevalence of RLS in CRF patients in India is very low as compared to the Western population.

[nightdancer in reply to Hidden]

and this study is on "uremic" patients only.

[Windwalker]

Doctor,

People don't mention RLS, because there are so many complaints that accompany the illness. They all have sleep disorders and fibromylgia, along with migrane and other back and neck complaints and many don't listen to us when we say our legs are restless. What they don't say is that the movement is maddening and all the other complaints would go away if they could just sleep at night instead of walking the floor or taking so many drugs they are in a coma rather than asleep.

My doctors had to have me threaten to end it before they'd listen to my tale of leaning against a wall and reading until I couldn't comprehend any more from sleep deprivation and the doctors wanted to do a sleep study instead of listening to the bloody cause of my problem.

I don't have much of a solution but dopamine and opiates let me sleep about 5 hours a night and that is the best I have had in 40 years.

Windwalker