Electro Muscle Stimulation (EMS) for RLS

Please share your experiences, successes, and failures in using non-drug therapies for RLS/WED (methods of relief that don't involve swallowing or injecting anything), including compression, heat, light, stretches, acupuncture, etc. Also under this heading, medical interventions that don't involve the administration of a medicine to the body (eg. varicose-vein operations, deep-brain stimulation). [This forum contains Topics started prior to 2009 that deal with Non-prescription Medicines, Supplements, & Diet.]
gciriani
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Electro Muscle Stimulation (EMS) for RLS

Post by gciriani »

Has anybody had any experience in treating RLS with EMS (Electro Muscle Stimulator). There is a forum dedicated to the use of EMS for sport training, with a posting on how for an athlete RLS was cured by EMS. Here is the link for the message which I quote

In another message the same person posted:

I'm not an MD, but what I've read is that, the plausible mechanism for the beneficial effect of EMS on RLS is the folowing. RLS is caused by a local circulation problem around the nerves that fire the muscles. EMS, if done correctly, increases capillarization in the proximity of the muscle, and by firing the nerves it trains nerve and muscle to work differently.

Can anybody confirm this?
Giovanni Ciriani

SquirmingSusan
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Post by SquirmingSusan »

Hi Giovanni, and welcome. RLS is believed to be caused by a problem in the brain with dopamine, or lack thereof. It isn't caused by poor circulation, although, as with just about everything, I would guess that poor circulation can make it worse.

Is EMS the kind of stimulation that actually makes the muscles contract and relax repeatedly? I'm thinking I had that I've used one of those devices in physical therapy. If so, it seems like it would help with the RLS, at least as long as it's turned on. Movement helps with RLS, so the muscle contractions would likely help with that.
Susan

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Post by gciriani »

Hi Susan,
The device helped long after it was turned off. What the other person posted in the EMS forum was that he used EMS to cause strong involuntary contractions of his leg's muscles for about 20 minutes, before going to bed. He then detached the machine and was able to sleep through the night without RLS.

So in a sense the contractions are involuntary, a little bit like a RLS contractions. Perhaps this rids the RLS sufferer of the involuntary contraction that are in storage for him/her during the night (it releases beforehand what would happen later during the night). Make sure you don't confuse EMS with TENS. The latter is used sometimes by physiotherapists as a from of pain therapy. The former is used for rehabilitation of atrophied muscles and for muscle training. The forum I described is hosted by a company that sells one brand that does not require medical prescription.

Can you point me out to research on RLS to learn more about it? It's difficult to believe that the problem is in the brain. From the descriptions I read it looks more like something that happens at the level of the nerves innervating the muscles.
Giovanni Ciriani

ViewsAskew
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Post by ViewsAskew »

It does seem like it's someplace else, but it's really in the brain.

Follow the link in my signature. It will take you to a thread in which we have many links. Some of these links will be to research that explains the brain, dopamine, iron connection.
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Post by SquirmingSusan »

Giovanni, there is a difference between RLS and PLMD, Periodic Limb Movement Disorder. Is that what you are referring to when you talk about the involuntary contractions? RLS doesn't come with involuntary muscle contractions, although many people with RLS also have PLMD. RLS is defined as an uncontrollable urge to move the limbs, mostly the legs, but also the arms and even other parts of the body. You can find the diagnostic criteria for RLS at the main http://www.rls.org site, as well as links to research.

Another good place to look for information is the Southern California RLS support group site: http://www.rlshelp.org. The guy who runs that site is Dr. Buchfuhrer (Dr. B), who is a bit of a hero to many of us because he will do what it takes to treat this condition. You can email him from the website, and he usually answers the same day. You can probably search the site for other patient letters about EMS treatment for RLS.

It IS a weird disorder, and yes, it's hard to believe that it's a problem in the brain, but that's what the research is pointing to.
Susan

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Research on RLS

Post by mackjergens »

http://www.ninds.nih.gov/disorders/rest ... s_legs.htm

---------------------------------------------------------------------------------
This was copied/pasted from the web site above.

What research is being done?



Within the Federal Government, the National Institute of Neurological Disorders and Stroke (NINDS), one of the National Institutes of Health, has primary responsibility for conducting and supporting research on RLS. The goal of this research is to increase scientific understanding of RLS, find improved methods of diagnosing and treating the syndrome, and discover ways to prevent it.

NINDS-supported researchers are investigating the possible role of dopamine function in RLS. Dopamine is a chemical messenger responsible for transmitting signals between one area of the brain, the substantia nigra, and the next relay station of the brain, the corpus striatum, to produce smooth, purposeful muscle activity. Researchers suspect that impaired transmission of dopamine signals may play a role in RLS. Additional research should provide new information about how RLS occurs and may help investigators identify more successful treatment options.

The NINDS sponsored a workshop on dopamine in 1999 to help plan a course for future research on disorders such as RLS and recommend ways to advance and encourage research in this field. Participants' recommendations for further research included the development of an animal model of RLS; additional genetic, epidemiologic, and pathophysiologic investigations of RLS; efforts to define genetic and non-genetic forms of RLS; establishment of a brain tissue bank to aid investigators; continuing investigations on dopamine and RLS; and studies of PLMD as it relates to RLS.

Research on pallidotomy, a surgical procedure in which a portion of the brain called the globus pallidus is lesioned, may contribute to a greater understanding of the pathophysiology of RLS and may lead to a possible treatment. A recent study by NINDS-funded researchers showed that a patient with RLS and Parkinson's disease benefited from a pallidotomy and obtained relief from the limb discomfort caused by RLS. Additional research must be conducted to duplicate these results in other patients and to learn whether pallidotomy would be effective in RLS patients who do not also have Parkinson's disease.

In other related research, NINDS scientists are conducting studies with patients to better understand the physiological mechanisms of PLMD associated with RLS.

top


Where can I get more information?

For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute's Brain Resources and Information Network (BRAIN) at:

BRAIN
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424
http://www.ninds.nih.gov


Information also is available from the following organizations:

Restless Legs Syndrome Foundation
1610 14th St NW Rochester, MN 55901-0229
Suite 300
Rochester, MN 55902-2985
rlsfoundation@rls.org
http://www.rls.org
Tel: 507-287-6465
Fax: 507-287-6312

National Sleep Foundation
1522 K Street NW
Suite 500
Washington, DC 20005
nsf@sleepfoundation.org
http://www.sleepfoundation.org
Tel: 202-347-3472
Fax: 202-347-3472


WE MOVE (Worldwide Education & Awareness for Movement Disorders)
204 West 84th Street
New York, NY 10024
wemove@wemove.org
http://www.wemove.org
Tel: 212-875-8312
Fax: 212-875-8389

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291


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"Restless Legs Syndrome Fact Sheet," NINDS. Publication date April 2001.

NIH Publication No. 01-4847

gciriani
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Post by gciriani »

Susan, Ann and Mack,
Thanks for the numerous resources you posted for me. I looked up a few, and I learned a lot.

According to the various studies, periodic limb movements of sleep (PLMS) seems to be either associated with RLS or a manifestation of RLS in many cases.

Is the worsening of the quality of life for RLS sufferers mainly caused by sleep deprivation? Is the sleep deprivation mainly caused by PLMS interrupting your sleep?
Giovanni Ciriani

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Post by ViewsAskew »

Quality of life is extremely complicated. I think it's different for all of us. For me, it's much more than interrupted sleep and daytime sleepiness. That was 15 years ago.


Not all of us have PLMs, either. And the RLS itself prevents a person from falling asleep. So, sleep deprivation is also multi-dimensional.

Help me understand why you are asking. Our responses may be more helpful if we do. Do you want to validate your own personal experience? Or someone else's?
Ann - Take what you need, leave the rest

Managing Your RLS

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Post by SquirmingSusan »

I went to Dr. B's website and searched for EMS, and there was a short snippet in there referring to a study that showed that EMS was very effective in reducing the number of PLMs during sleep. I don't know if it was in that summary or if Dr. B said it, but someone said that most doctors don't believe that PLMD is worth treating. I think many of us would beg to differ!

Most people with RLS also have PLMD - I believe it's about 80%. And there are those who have PLMD, and don't have RLS. It's a separate condition, but definitely related to RLS.

I have PLM all day long, as well as at night and when they're bad, I can have 6 different muscles jerking at 6 different frequencies. It's very annoying. And I know that the quality of my sleep is affected by them, because I have all the symptoms of chronic fatigue syndrome.

I can't say that my own worsened quality of life is caused by the PLMD over the RLS. The RLS itself causes a lot of misery on its own. But I know that even on good days, when the symptoms are under control, that I still have delayed sleep/circadian rhythm disorder, and a lot of daytime fatigue.

I have an EMS device in my house, but I don't have any means to program it. It's made so that only the company can program it. Dang.
Susan

gciriani
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Post by gciriani »

Susan,
I could help you with the programming, because I import a brand of these devices, which are then sold by distributors.

I know a bit about EMS and know that not all devices are created equal. I actually wrote to Dr. B. because I've noticed that the device mentioned in the study may not have been used appropriately to obtain the most.

Those who do not know much about EMS tend to think that a stimulation is a stimulation. However, you can make your muscles do very different things. What I suspect is that in the study many parameters were not set to get the best result.

If you went to the link I gave in my initial post, you would see that appropriate stimulation can take many different forms. In particular there are activation patterns (called programs) that cause the body to naturally release endorphines. Endorphines are neurotransmitters like most of the things I've seen in the drugs suggested for RLS. So there could be a specific program that is most effective for taking care of PLMD.

A contributor to this thread wrote that RLS originates in the brain. I'm not convinced, and actually Dr.B. writes in his site that other researchers believe the opposite: that it originates at peripheral level (where the nerve innervates the muscle). Various research, he further writes, are inconclusive regarding the origin. So I think it's worthwhile to explore EMS further.
Giovanni Ciriani

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Post by ViewsAskew »

gciriani wrote:
A contributor to this thread wrote that RLS originates in the brain. I'm not convinced, and actually Dr.B. writes in his site that other researchers believe the opposite: that it originates at peripheral level (where the nerve innervates the muscle). Various research, he further writes, are inconclusive regarding the origin. So I think it's worthwhile to explore EMS further.


I realize you just asked about where to read, but have you read any of the research about the brain? I guess it's too simplistic to say that it definitely does originate in the brain, however many findings point to its involvement. In autopsies, they find that the cells in the brain do not work correctly. They cannot dock together to transfer iron. There are too many dopamine receptors, implicating that they can't get the dopamine they need. They also have found a dopamine regulation problem and a circadian rhythm problem. They also know that severe iron problems cause RLS in a large number of people (the majority of dialysis patients to about 30-40% of celiacs (absorption issues) to 20-30% or so of pregnant women, etc).

Some scientists say that the dopaminergic issue is a CFS problem, originating in a very little studied area or the spine.

But, the majority of independent studies conclude that iron and dopamine are involved in some way. The book, "Clinical Management of Restless Legs Syndrome" lists many of the various studies that have been done. After discussing all of them including ones that implicate the opiate endogenous system, the authors write, "Other neuronal systems--the adrenergic, serotoninergic, glutaminergic, gabaergic, orexinergic, histaminergic, and adenosinergic--have been implicated by some therapeutic or other studies in RLS, but evidence for and understanding of their potential roles is only at an early stage."

Then, they write this sentence, "Given the complex interrelationships of neural systems in teh brain, it is likely that many systems may play some role in the development, expression, and perception of RLS symptoms."

I'm in no way saying the stimulation might not help. Or that they know for sure where RLS starts. Right now they basically know a bunch of bits and pieces. They have genes likely for causing it. They just don't know how to put it all together and how the mechanism works. But, it certainly seems highly likely that dopamine is involved in some way. Another quote from the above mentioned book is telling, "To date, it has not been conclusively shown that disrupting the A11 system produces a suitable model for RLS, and studies on the A11 system have not been done. We are therefore still unsure which dopaminergic system is most responsible for RLS."
Ann - Take what you need, leave the rest

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Post by ViewsAskew »

Since you're really interested in the topic and want to see studies, here are two more threads to point you to. You can spend hours reading the linksL

First, in the Pharm section. This might not be directly related, but you can see what is working.

More likely to be of interest to you is in the General RLS section. This lists studies that we have located over the past several years.
Ann - Take what you need, leave the rest

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gciriani
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Post by gciriani »

Ann, I went through the links you proposed. Thank you, very educational.

I would be interested to know if anybody has tried WBV (whole-body vibration) exercise. This form of exercise has shown to increase the natural level of many natural hormones several folds. In view of all the hormonal and neurotransmitter imbalances that accompany RLS, there may be an interaction between this form of exercise and RLS.

You need to find an exercise studio or gym that has a vibration (WBV) platform. There aren't that many in the US, as it is more prevalent in NZ, Australia, Europe and Asia. However, if you live in NYC, Seattle, Hartford-CT and few other places there are studios there who have it, and you could try to see if it makes a difference.
Giovanni Ciriani

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Post by Nicky »

A few years ago I bought something called the Rebuilder System device online as I had developed peripheral neuropathy (PN). So I started daily use of the machine, which also has a EMS function that you use about a month into the treatment. I had mixed results as I think (maybe) the device may sometimes have stimulated what I now know to be rls/PLMD (it is said that PN can lead to rls). I haven't been back to the device for a while but after reading these posts I am going to try to give it another go so that I can get onto the EMS part of it. Basically you put your feet in a divided foot bath, the device sends a signal thru the foot, up the leg, across the spine & down to other foot & back again. Maybe the EMS part, which I haven't got onto, may help more than the PN function as mine is stable according to my nerve conduction study. The Rebuilder company answered my questions by saying it can help rls (as well as spine problems & it's primary function, neuropathy). I think I may try it again for my neuropathy as for a while I did feel my feet feel almost back to normal (less numb, less burning but I as always suspect it may have just been a good phase). I'll try using it again & get onto EMS setting this time. You can see I'm trying to tackle my rls from all sides. I think it's complicated for me as I was always gonna get rls due to the prevelance in my family but the neuropathy may have 'kick started' it. Sorry if this post seems garbled or repeats anything previously posted. Also it now occurs to me that as this device is marketed for spine (sciatica) issues isn't there dopermine in the spine as well as the brain? I'll give it a go again & let you guys know how I get on.
Nicky

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Post by ViewsAskew »

Nicky, you are spot on - there is dopamine in the spine and some recent research suggests it may be where the dopamine/RLS problem starts. But, as with all research, it's just bits and pieces. I hope that in the next two years they make some progress putting these pieces together.

We're due!
Ann - Take what you need, leave the rest

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