Published Research - General Sleep and RLS (WED)

For everything and anything else not covered in the other WED/RLS sections.
ViewsAskew
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Re: RLS and Cardiovascular Disease

Postby ViewsAskew » Wed Jun 26, 2019 9:21 pm

Rustsmith wrote:Previous studies found a correlation between cardiovascular disease (CVD) and RLS, particularly in women. This extension to that previous study found that the risk of CVD was almost eliminated by effective treatment of the RLS.

https://academic.oup.com/sleep/article- ... m=fulltext


Good news! Except "effective" can be elusive for a small subset of us.
Ann - Take what you need, leave the rest

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Frunobulax
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Re: Published Research - General Sleep and RLS (WED)

Postby Frunobulax » Mon Jul 15, 2019 10:26 am

XenMan wrote:
Rustsmith wrote:But the important thing is that research is making major strides.


My point is that the research is in the wrong direction. I make these statements presented as a solo and apparent madman, which I’m prepared to accept, based on my own experiences, what I have read on numerous forums, and talking to doctors.


So what is the right direction? Bold statements that something is wrong are a dime a dozen, unless you can back it up. I have read a lot about "other directions", most of which were based on sample size one, people who managed to cure themselves, boasting they had the key to fixing RLS.

Over the last 5 years I started to question everything I knew about medicine, as conventional medicine was failing me and I had to search for alternatives. And I came to the conclusion that (a) a lot of research is going the wrong way as most studies are looking for chemical solutions to treat symptoms instead of looking to fix the underlying problem (which is not surprising as the money usually comes from companies that earn their money by selling chemical solutions, but (b) the research methods itself (double blind, placebo controlled and large groups) are excellent if you ask the right questions. And of course (c) studies can only answer isolated questions, but are still an indispensable tool to back up holistic approaches.

Personally I find it very convincing that the majority of RLS patients suffers from BID. Of course, the interesting question is "why", and if there is a uniform mechanism or if there can be many different reasons leading to the same symptoms. And another question is whether there are small but significant subgroups of patients who experience RLS but have no BID - that would explain a lot of those "other directions" that seem to work for only a fraction of RLS sufferers.

More research is needed urgently. But as far as I'm concerned, we're headed in the right direcion.

stjohnh
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Re: Published Research - General Sleep and RLS (WED)

Postby stjohnh » Mon Jul 15, 2019 1:16 pm

Frunobulax wrote:...
Personally I find it very convincing that the majority of RLS patients suffers from BID. Of course, the interesting question is "why", and if there is a uniform mechanism or if there can be many different reasons leading to the same symptoms. And another question is whether there are small but significant subgroups of patients who experience RLS but have no BID - that would explain a lot of those "other directions" that seem to work for only a fraction of RLS sufferers....


Current thinking is that ALL RLS patients, with the exception of chronic renal failure patients on dialysis, have BID. Current thinking is that the BID is caused by genetic deficiencies of unknown type affecting the active transport of iron across the blood-brain barrier (except for those with iron deficiency anemia, their BID is caused by just not enough available iron). 19 genes have been identified as risk factors for RLS, the various combinations of those 19 can easily produce the immense variation in severity and response to treatment that characterizes RLS.

Chronic kidney failure patients on dialysis have SEVERE multiple abnormalities in their metabolism. Interestingly, their RLS goes away quickly if they get a kidney transplant.
Blessings,
Holland

Frunobulax
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Re: Published Research - General Sleep and RLS (WED)

Postby Frunobulax » Mon Jul 15, 2019 9:02 pm

stjohnh wrote:
Frunobulax wrote:...
Personally I find it very convincing that the majority of RLS patients suffers from BID.


Current thinking is that ALL RLS patients, with the exception of chronic renal failure patients on dialysis, have BID.


Can we be sure? There are a few cases of "miracle healings" that don't fit the profile of usual RLS patients very well - it could be that there is another small subgroup just like the dialysis patients where we have another mechanism. After all, we are not sure how the urge to move is connected to the BID, and the brain is a mightily complex machine. If there is a such a subgroup this could explain some weird cases.

I'm part of such a small subgroup in a different way - I suffer from ME/CFS, which has almost the same symptoms as a depression. With depression being a factor of 50 to 70 more likely, almost every physician will quickly diagnose a depression (at least intially). I'm very careful with statistical assumptions even if 98% of the patients seem to fit the data :)

stjohnh
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Re: Published Research - General Sleep and RLS (WED)

Postby stjohnh » Mon Jul 15, 2019 9:14 pm

Frunobulax wrote:
stjohnh wrote:...

Current thinking is that ALL RLS patients, with the exception of chronic renal failure patients on dialysis, have BID.


Can we be sure? There are a few cases of "miracle healings" that don't fit the profile of usual RLS patients very well - it could be that there is another small subgroup just like the dialysis patients where we have another mechanism...


No, of course we can't be sure, that is partly why I qualified my statement with "current thinking." Dr. Earley, in his Jan 2018 webinar at rls.org, said all RLS patients have BID. He didn't qualify that, but I don't know that dialysis patients have BID, I don't think they do. And your points about small subgroups and miracle healings are certainly valid as well. As you pointed out, more research is needed.
Blessings,
Holland

Rustsmith
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Re: Published Research - General Sleep and RLS (WED)

Postby Rustsmith » Tue Jul 16, 2019 2:53 am

To that point, in Dr Ondo's recent webinar on Co-Morbid conditions, one of the diseases that has a higher correlation is Parkinson's. Yet at the patient conference last fall, one of the slides showed that Parkinson's patients have high levels of iron in the same area where we have BID.

One of the other co-morbids was MS. MS causes loss of neurons in large areas of the brain, which often causes the brain to re-wire itself. Dr Ondo simply said that due to this, they don't know why there is a correlation with RLS. But I know that there is, because my wife experiences very mild RLS and she has had MS since she was a teenager. In fact, one of her doctor's once remarked, while looking at her MRI, that she didn't know why my was even alive, much less able to walk and function within reason. She wrote if off to the brain's "plasticity" or ability to rewire itself. I should also add that we both later ended up firing this neurologist for being borderline incompetent.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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Re: Published Research - RLS and Suicide

Postby Rustsmith » Sun Aug 25, 2019 1:24 am

This isn't exactly new news to anyone with severe RLS, but at least the neurologists and psychiatrists are beginning to understand the fact that our lives are not that easy. The study looked at over 160,000 patients with RLS and other severe medical conditions. The conclusions were:

This study suggests that individuals with RLS have a higher risk of committing suicide and self-harm, and the increased risk is independent of depression, sleep disorders, chronic conditions, and other factors being examined. Future investigations are needed to explore the possible mechanisms by which RLS increases suicide risk. Given the high prevalence of RLS and increasing incidence of suicide in the United States, it may be critical to consider assessment for suicide risk factors and suicidal ideation, as well as potential psychological interventions and suicidal management in the treatment of individuals with RLS.


https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2748664
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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ViewsAskew
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Re: Published Research - General Sleep and RLS (WED)

Postby ViewsAskew » Mon Aug 26, 2019 7:13 pm

I just came to post the same study, Rustsmith. Definitely happy they did this study...so very bereft for all of our cohorts who are not getting the medication, sleep, and help they need.
Ann - Take what you need, leave the rest



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Rustsmith
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Role of Opioid Receptors in RLS

Postby Rustsmith » Sun Sep 01, 2019 10:20 pm

Unfortunately the abstract really doesn't do this paper justice. Had I been a reviewer, I would have asked them to rewrite it.

https://www.sciencedirect.com/science/article/pii/S0166432819307703

There are several really interesting things discussed in the paper that I do not remember seeing elsewhere.

1) The authors studied mice that were triple genetic knockout for the mu, delta and kappa opioid receptors. They found that these mice were naturally low in serum iron at a level that is comparable to the iron starved mice that are usually used to study RLS. They concluded that the opioid receptors (possibly delta) play a role in determining iron levels throughout the body and in the brain.
2) The triple KO mice all displayed behaviors typical of RLS, including increased activity during the period when they should be resting with no reduction in activity during their active period.
3) They looked at thermal sensitivity of their tails and found that the triple KO mice had "thermal hypoaestheisia", namely, they showed a delayed reaction to thermal stimulation. That sounds a lot like something that we have discussed here in the past where some of us are able to handle hotter cookwear than non-RLS members of our families.
4) The triple KO mice also showed the same sort of disfunctions in their dopamine and glutamate systems as is found in RLS.

As a result, the authors may have opened the door to yet another part of the puzzle, namely the role of opioids and the possibility that RLS also includes some sort of disfunction in our natural opioid production (endorphins and met-enkephlins). It will therefore be very interesting to see what Dr Ferre comes up with in the study of the role of opioids that he is currently working on.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Re: Role of Opioid Receptors in RLS

Postby ViewsAskew » Tue Sep 03, 2019 3:53 pm

Rustsmith wrote:Unfortunately the abstract really doesn't do this paper justice. Had I been a reviewer, I would have asked them to rewrite it.

https://www.sciencedirect.com/science/article/pii/S0166432819307703

There are several really interesting things discussed in the paper that I do not remember seeing elsewhere.

1) The authors studied mice that were triple genetic knockout for the mu, delta and kappa opioid receptors. They found that these mice were naturally low in serum iron at a level that is comparable to the iron starved mice that are usually used to study RLS. They concluded that the opioid receptors (possibly delta) play a role in determining iron levels throughout the body and in the brain.
2) The triple KO mice all displayed behaviors typical of RLS, including increased activity during the period when they should be resting with no reduction in activity during their active period.
3) They looked at thermal sensitivity of their tails and found that the triple KO mice had "thermal hypoaestheisia", namely, they showed a delayed reaction to thermal stimulation. That sounds a lot like something that we have discussed here in the past where some of us are able to handle hotter cookwear than non-RLS members of our families.
4) The triple KO mice also showed the same sort of disfunctions in their dopamine and glutamate systems as is found in RLS.

As a result, the authors may have opened the door to yet another part of the puzzle, namely the role of opioids and the possibility that RLS also includes some sort of disfunction in our natural opioid production (endorphins and met-enkephlins). It will therefore be very interesting to see what Dr Ferre comes up with in the study of the role of opioids that he is currently working on.


WOW! Had to be something. Very interesting.
Ann - Take what you need, leave the rest



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Polar Bear
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Re: Published Research - General Sleep and RLS (WED)

Postby Polar Bear » Tue Sep 03, 2019 5:16 pm

My husband always comments on how I handle hot cookware and he can't.
It's good to hear of research and possible progress.
Betty
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Impact of Morning vs Afternoon Exercise on Iron Absorption

Postby badnights » Tue Nov 05, 2019 8:01 am

"Although exercise resulted in increased concentrations of IL-6 and hepcidin, iron was best absorbed in the morning after exercise, indicating there may be a transient mechanism during the acute postexercise window to promote iron absorption opposing the homeostatic regulation by serum hepcidin elevations."

https://www.medscape.com/viewarticle/91 ... 1970&faf=1
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