My RLS is 99% better and I've been able to nearly stop my Gabapentin

[dragonlylover]

I've had RLS for about 10 years. To the point where I feel like I will lose my mind if I have to live another 10 years like this. I'm in my 50s. .. and NO I am not suicidal. At any rate. Three weeks ago, I purchased one of those percussion massagers they have been advertising a bit online. There are several manufacturers of these things, but it pretty much looks like a jigsaw with several options for attachments. I have been massaging my legs with this every night and I swear to you it is working. I also have fibromyalgia. I will say that at first there is pain (because my skin often hurts to touch).. but I fight through the pain and just breath and massage my calfs and thighs for about 20 minutes every night and I have backed off my Gabapentin by 80%. Just to be sure it was not coincidence, I have tried to sleep without the massager and it is impossible. Gabapentin gives me severe constipation and also makes me severely hung-over. My doctor told me I'd get used to taking it, but I never did. At any rate.. I wanted to share this massage experience with you. I am not going to name the brand, because I am here to advertise a product.. but it is a "percussion"-type massager. I hope this can work for anyone reading tis.

[cdto]

Well what I have found is if I cant stop my legs then I toss hot water bottles around in bed.

Other times I need between 1-4 baths a night to calm my legs down before I can sleep. At these times I often think why do I take all those drugs then have to resort to natural living. All these baths take a lot of my sleeping time away. I am pleased that you have found something that works for you

[OFgc in reply to cdto]

I think it has to do with proprioception

ncbi.nlm.nih.gov/pmc/articl...

[cdto in reply to cdto]

Yes I take enough drugs but then there is all the Vitamins. I feel so ill after I take everything. Targin I have found that I get the Cramp in my hand and fingers in the middle of the night for 4 hours. I did read up but it is not a side effect. I mentioned it to Dr but he just brushed it off. I have never had it like this before Targin. I really did not need anything else to keep me awake

[OFgc]

I'm glad you found relief.

Reading you post made me think of two things.

1. Dr. Terry Wahls, who "cured" her self from MS used (or uses) electrical stimulation to regain movement in her body.

2. Chiropractors use a "gun" to shoot vibrations from one's legs to their brains.

It looks rather rapid but somehow it works.

So I think what you found somehow falls into this family of connecting the legs to the brain through vibrations. Does that make any sense?

[cdto in reply to OFgc]

Yes it sure does Thank you

[Allyp69]

Good for you...massage sounds better than high doses of medication.😊

[Joolsg]

Thanks for sharing. It's great to hear good news and I'm delighted you have found something that works for you.

[Hidden]

Brilliant, I'm glad it's working for you and you're able to reduce the drugs.

There is such a device licensed in the USA for RLS.

[cdto in reply to Hidden]

Hi

Does that machine really work? I bet its expensive tho

[Hidden in reply to cdto]

I've heard the device is of some help. Probably for mild RLS. I can't remember what it's called.

It may be expensive but cost is relative.

PS it's called "Relaxis".

[Graham3196 in reply to Hidden]

There seems to be some confusion about the brand of massager "Relaxis" It looks like there are two products on the market with the same brand name or it might just be that they have a similar description.

One design is associated with Doctor Buchfuhrer. This is an american product developed by Dr Burbank. Dr Burbank suffered from RLS and developed this massager to treat his own condition. The other is the machine referred to in the forum reply from Amazon. All I know about the second machine is that it cost GBP29 and apparently shows some promise for helping a couple of people with their RLS. This may not be the same as the “Buchfuhrer Relaxis” but since that is unavailable and this one is only GBP29 it would seem a good idea to buy one and try it out.

Dragonlylover Would you please copy out or photograph the identification plate information as much as possible. I can’t find the product on Amazon Australia so can anyone tell me the brand name of the device called a “percussion massager” that is listed on Amazon in the UK. At 29 quid it has to be worth trying. Besides, my wife has a bursitis and my arm is wearing out massaging it so it might be very healthy for my arm.

Details from the website of the American machine (myrelaxis.com):

“This initial success with Dr. Burbank led to the development of the Symphony™ device (now called Relaxis®). The completion of two clinical, multi-center, double blind clinical studies with 158 patients resulted in FDA clearance to market the Relaxis device.

Relaxis is a “First in Class,” FDA-cleared non-drug medical device that is indicated to improve the quality of sleep in patients with primary Restless Legs Syndrome (RLS) through the use of vibratory counterstimulation. “First In Class” means it’s the very first medical device (vs. drug treatment) to improve the quality of sleep for sufferers of primary RLS.

Sensory NeuroStimulation is located in, and assembles the Relaxis devices in San Clemente, California.”

Doctor Buchfuhrer is associated with this machine and provides a history and explains its action on this page myrelaxis.com/rls-and-relaxis/

I think this machine cost about USD700 but I can’t find that reference. Its not relevant at the moment because they are not selling the machine since 2015 on Amazon or anywhere. I contacted the company to find an Australian agent and I received the following reply from:

Carl Swindle

VP

Sensory NeuroStimulation, Inc.

myrelaxis.com

[e-mail]

Office: 949-429-8428

Customer Service: 888-475-7435

Fax: [phone]

Mr swindle said in his reply:

It is therefore with considerable regret that we are writing today to inform you that we are no longer filling new prescriptions for Relaxis units for the foreseeable future.

Despite our concerted efforts over the past five years to gain a Medicare Reimbursement Code for Relaxis, the Centers for Medicare and Medicaid Services (CMS) and their DMAC subcontractor have denied our application. Without the issuance of this Code, we, as a small, self-funded start-up company, find it impossible to produce additional new units, despite growing patient demand.” And “We do not sell through Amazon and at this time, we do not have a sales operation outside the US.”

He described this as a “temporary setback”and says they will continue to try to get agreement.

All very interesting and if it ends up with us all owning a percussion massager and reduced RLS all around it will be very nice.

[Hidden in reply to Graham3196]

Brilliant information, thanks.

[Alex2308]

I use thera cane type to massage my hips. But the biggest improvement happened after I enriched my food with red meat for iron, also lots of tomato paste mixed with ketchup for potassium. And 40mg of Magnesium citrate. Plus mulivitamins to help the absorbtion of iron, potassium and magnesium. Every day.

[Boldgirl45 in reply to Alex2308]

Would you mind telling me the brands you use? Thank you!

[Alex2308 in reply to Boldgirl45]

Original thera cane and a no name chinese thera type cane too. And Optimum Nutrition multivitamins along with 40 mg of any Magnesium citrate. Brands don't matter much.

[Joolsg]

I bought one from Amazon for £29 & have just spent about 15 minutes using it. I found my calves incredibly sensitive- the muscles & nerves kept jumping’ all the way through. However, once I stopped using it they settled after about 5 minutes.

I’m hoping if I keep using it I’ll get a similar result.

Did you find your calves ultra sensitive when using it at first?

[dragonlylover in reply to Joolsg]

My skin hurt to use it at first. I've gotten used to it now. I did not have any jumping or twitching using it, except when on the bottom of my feet, it felt like popcorn popping, but was not a really unpleasant feeling, just weird. I continue to get tremendous relief with the massager. I'm using it all over my legs and hips and buttocks and try to make a little stretch (like a piriformis stretch) while using it on my glutes. It really also helps me walk better without as much pain also

[Joolsg in reply to dragonlylover]

I’ve now used my percussion massager for 3 nights and sadly, it’s actually made my RLS worse. I suspect it’s because my MS causes my nerves to be hyper sensitive. My daughter is now using it for her post workout tight muscles so it’s been a useful purchase.