RLS and TENS... my story

[scooterspal]

Hello to all.

My name... my real name... is George and I live in Connecticut. I'm a real person and I have RLS. Have had it since I was a child. I'm middle age now.

Years ago I had had enough of the twitching and jerking so I sought out some way to put and end to it and do it with out medication. To be honest I take very few meds. Some nasal spray for allergies is about all. Not boasting just making my point. I hate meds. My doctor hates them more. We get along just fine.

I had some background in electronics and I had played with what we used to call "ticklers" when we were kids. Try to get the girls to hold your hand and then grab the tickler stick with the other. She, and you, would get this mild electrical shock. She ran away screaming and you stood there laughing. Harmless fun.

TENS, stands for trans-cutaneous electrical nerve stimulation, for the uninitiated, is a really just a grown up form or a tickler. When connected to the human body it sends out a mild (meaning controlled) electrical current. Used properly it can correct or modify conditions in the body.

TENS can be used for RLS and it does work. I'm living proof of that. My life would much less enjoyable had it not been for my TENS unit. Lately the RLS has gotten much more intense but by using TENS I can deal with it in short order. You can probably understand how good a feeling that is. To know in just a few minutes the situation will be corrected... without using any drugs... with no side affects later on.

I believe strongly in TENS and to that end a few years ago I created a web page dedicated to using TENS for RLS. I even show the device I built and use to this day.

http://www.webtfg.com/rls.htm

Before you give up hope and especially before you load up on drugs consider giving TENS a try.

Questions? Ask and and I will be happy to try and answer them, here.

George

[ViewsAskew]

Thanks for your story, George. So glad that this helps you and hope it continues to for a long, long time.

There isn't much research about it. Several people have tried it and reported here over the years - it helped some, not others.

It's recently been hypothesized that small fiber neuropathy is concurrent with WED in some cases. In these cases, the TENS would very likely work.

My brother-in-law, who has diabetes, swears that this machine helps him with neuropathy. It works very differently from a TENS unit: http://www.rebuildermedical.com/index.php

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[scooterspal]

Glad to hear this is working for your brother but that price tag of $500 to $800 has me stumped.

There are no specifications of any kind listed. Nothing about the signal it is administering.
To quote the FAQ page for this unit:

What does it feel like?
Answer: The ReBuilder feels good. The signal feels like a tiny tingle that pulses on and off...

That sounds a lot like the description for the unit I made... for $10.

Frankly, I cannot see what you are getting for the high cost of this unit. Would like to see some electrical data or even waveforms of the signal it is supplying.

[Polar Bear]

When I had a sore shoulder I bought a Tens Machine for around £30. And I think they even went much cheaper.

[ViewsAskew]

Glad to hear this is working for your brother but that price tag of $500 to $800 has me stumped.

There are no specifications of any kind listed. Nothing about the signal it is administering.
To quote the FAQ page for this unit:

What does it feel like?
Answer: The ReBuilder feels good. The signal feels like a tiny tingle that pulses on and off...

That sounds a lot like the description for the unit I made... for $10.

Frankly, I cannot see what you are getting for the high cost of this unit. Would like to see some electrical data or even waveforms of the signal it is supplying.

No idea . He doesn't have RLS/WED - rather severe neuropathy. He is an engineer and has used and built other units. I think he went through discussions with them before he bought it. Like you, I was skeptical when I read it - nothing to make me feel it was worth trying!

[badnights]

Hi scooterspal

I checked out your page. Lots of description on the unit you built, which is great. Not much description of what your symptoms are like that you are fixing with this unit. Can you describe your symptoms better, please? The reason I ask is because there are quite a few conditions that mimic RLS but have different root causes, so would respond to different treatments.

[LucyBrown]

George! You're with this group! I just found your website a few days ago through the RLS group on Facebook and I tried your location of the electrodes on the legs (hamstrings) for the first time last night. It was instant relief. I left it on for three hours and slept wonderfully. So far today, at noon, this is one of the best days I've had in a while.
I have been drug free for two months (after being on gabapentin/Horizant for two years) by using the wrist stimulater that is sold for nausea/motion sickness. It electrically stimulates the median nerve. I had it in the house because I need it for airplane flights.
After that helped considerably for a couple of weeks, I thought TENS might be even better, and I was afraid my hand would get tired and so I wanted to try other parts of the body. I ordered a simple, inexpensive TENS device. (I don't know what people are seeing for $800. You can get them from a physical therapist for $40 and even cheaper on the internet. I saw one for $7.) However, the TENS didn't work well for me (at first) and I tried it on my legs, too, BUT I put it on my ankles, knees, calf-- I never tried the hamstring!
The simple TENS doesn't stimulate the median nerve well, either, as sold. Soooo, just this weekend I cut down the electrodes and placed them approximately the way the motion sickness device places the contacts. It worked well, but I think bursts are necessary for the optimal effect on my RLS through the median nerve. The simple TENS devices don't make it possible to adjust bursts. Your placement on the hamstring did not need the bursting.
Anyway, this is great and I am going to try to get this into the medical literature. I was going to write up myself as a case, but now I can add you! And I see that there are others who are helped. Even if a few people are helped,it's worth it. But people have to know that TENS has to be placed and used in very specific ways to do anything for WED/RLS. Hmm. I'm not sure everyone will see this. I may have to make a new post and include all this plus my symptoms that are helped. I'm a newbie here.

[ViewsAskew]

So glad to see you considering writing it up.

It would be really interesting for all the people who've used TENS to describe exactly what they do. We have several people here who use one - but don't think that most have had stellar success. Placement may be key - and may vary depending on what "type" of WED/RLS a person has. We know several genes are implicated, so could be that the genetic variety has an effect on where/how to treat it.

[LucyBrown]

Exactly, ViewsAskew! I would love to hear from everyone who has tried TENS or who is using it. I see it as an important adjunct that may reduce drug requirements. At least one person I know of uses it exclusively. From people who use it on this discussion group, I would like to know their symptoms, and how they use/used the TENS device. I hope that I can reach everyone with the questions, at least. Their answers may help a lot of people. It would be important to know exactly what they do/did.

[Polar Bear]

Some time ago, a few years, I got a Tens machine to use on my shoulder, never could decide if it helped much.

When I read here of folks trying the Tens I hauled it out to see what would happen. But I didn't know anything about placement. And because I have WED symptoms from the groin down and also in my arms... well there was lots of choice for placement. It was a case of stick it on .... like a pin in a haystack.
This discussion about placement is very interesting.
It is likely that different folks would need different placements, for instance sometimes my arms are 'going' and my legs are ok.
And would it work for the moderate to severe sufferer.

[LucyBrown]

Some time ago, a few years, I got a Tens machine to use on my shoulder, never could decide if it helped much.
... And because I have WED symptoms from the groin down and also in my arms... well there was lots of choice for placement. ...This discussion about placement is very interesting. It is likely that different folks would need different placements, for instance sometimes my arms are 'going' and my legs are ok.

Well, according to one theory, the hamstring muscle placement on the back of the legs Could help both arms and legs: The stimulation may be affecting a brainstem circuit for walking, and we swing our arms when we walk, so the effect might incorporate legs and arms together. (I'm a neuroscientist who studied the motor system for years, especially the basal ganglia. ((now I study the brain systems of love!))). The hamstrings are essential for walking and their representation in the brainstem may overlap with all parts of the legs and arms. There is a study in Annals of Neurology by Bucher et al from 1997 titled "Cerebral generators Involved in the Pathogenesis of Restless Legs Syndrome." In that study they show evidence for pathology in the brain stem where "walking circuits" might be located. With this rationale, it's worth a try to put electrodes on the hamstrings even if arms are involved.

A wrist placement on the median nerve might work better for arms, though. It just has to be tried. The wrist placement may just release endogenous opioids.

And would it work for the moderate to severe sufferer.

I would love to know the answer to that question.

[Polar Bear]

Thanks again for this information.

[badnights]

I'm going to volunteer to go to Sweden..... http://www.sciencedaily.com/releases/20 ... ce+News%29

Or, here's a copy of the article, it's from ScienceDaily -

Suited for Treatment of Brain Damage

Oct. 14, 2013 — For those with brain damage or neurological disorders -- such as MS or Parkinson's -- treatment could be as close as the wardrobe.

Improved range of motion and reduced pain for people with brain injuries and neurological disorders may now be available with a specially-designed elastic body suit fitted with electrodes, which was designed at Stockholm's KTH Royal Institute of Technology in collaboration with health care and business partners.

The Mollii garment provides an alternative to painful treatments and surgery, by treating the body with electrical stimulation to ease tension and spasms. The result is reduced pain perception and increased mobility.

The idea originated with a Swedish chiropractor, Fredrik Lundqvist, who worked with rehabilitation of brain-damaged patients. Lundqvist struck upon the idea of sewing electrical stimuli -- similar to TENS (transcutaneous electrical nerve stimulation) electrodes -- into garments that the patient can wear.

He turned to KTH researchers Johan Gawell and Jonas Wistrand at the Department of Machine Design at KTH. "They produced a prototype of the product, and today they are working full time on the development of Mollii," Lundqvist says.

Designed with ordinary swimsuit material, the body suit has conductive elastic sewn into it, with electrodes located at the major muscles.

Battery-powered light current is conducted via silver wires to 58 electrodes attached to the inside of the garment, which in turn stimulate as many as distinct 42 muscles, according to the patient's needs.

Batteries are placed in a small control box fitted at the waistband.

"The idea is that the clothes should be used for a few hours, three times a week, and the effect is expected to last for up to two days," Lundqvist says.

Users are advised engage in movement through training and stretching during the treatment.

"To enhance the quality of life the patient may choose to use Mollii before it's time to go to work, school or to a social event. That enables the body to function as well as possible when it is really needed," he says.

The garment has been shown to be highly effective in patient examinations performed in collaboration with a PhD student Stockholm's Karolinska Institute, Lundvist says. "One-hundred percent of the participants in the survey say they have experienced improvements in existing function or quality of life," he says.

Stroke patients with paralysis on one side have been found to gain increased mobility in spastic limbs, in that they had improved gait and their arms and hands worked better after treatment.

"As a bonus, the patients often sleep better, and their pharyngeal motor skills and speech improved after using Mollii," Lundqvist says.

"It can also help children with physical disabilities or motor difficulties in the feet, such as constantly walking on toes or with their feet at inward angles," Lundqvist says.

Treating patients with movement difficulties and pain due to neurological damage can often require surgery, injections of botolinumtoxin (neurotoxin) or strong medications.

"These treatments mean high costs and side effects, while our clothes are simple and safe to use," Lundqvist says. "You can reduce the number of hospital visits because the therapy can be performed at home. And when the mobility increases, there is less need for walkers or wheelchairs."

Mollii is an approved CE marked medical device, but independent clinical tests have yet been performed. But the company behind the treatment, Inerventions, has launched a scientific study of the clinical effectiveness of the garment, in partnership with Sweden's Rehab Medical clinics. Lundqvist says the results should come next year.

Today, Mollii is available through the Swedish health care system as a personal tool prescribed by physical or occupational therapists. And the garment can also be purchased directly from Inerventions.

The price is about EUR 5,600 for two years guaranteed spasticity treatment. If the suit during that time becomes too small, the patient can switch to a new, tested garment at no additional cost.

In Denmark, the garment is already subsidized with municipal funds for treatment of nerve damage, based on recommendations from a physiotherapist.

Inerventions' goal is to establish Mollii in Europe, the U.S. and Japan. The garment can in the future be used to help patients with chronic pain and people with Restless Legs Syndrome (RLS).

[ViewsAskew]

WAY cool!

[cornelia]

I wish, I wish that this could help us. Who knows?

Corrie