Just found something that works for me

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.]
Tbascokat
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Just found something that works for me

Postby Tbascokat » Thu Feb 09, 2017 7:45 pm

I am new to the board and actually searched it out after accidentally finding something that works for me. I've tried it twice and it amazed me. I've had rls for about 20 years now. Worse when I am more tired and have had sleep issues due to whatever. My life has been a bit stressful recently and sleep hasn't been what I've needed. The other night I woke up during the night, having an episode with my legs. My boyfriend, who was with me, started scratching/rubbing my back as I was laying on my stomach. Almost immediately it stopped and I fell back asleep. I didn't think much about it at the time, but sort of wondered the next morning. Last night I was so tired, and we were getting ready to go to bed. My legs started, and it was a big episode. I laid down and asked him to scratch my back. Same results. I've tried a few medications years back for it with no success, one even lowered my heart rate too low, so I have just dealt with it. So I started reading up more this morning, and while I still see that nobody seems to know how/why exactly anything about it, it does seem dopamine plays a major role. Is dopamine released when someone is scratching and/or massaging your back? Admit I loooove my back scratched, to the point that I believe it releases a high level of endorphins and seems to give me a high. I've always begged for people to scratch or rub my back. I wonder if for some reason this endorphin release is also accompanied by dopamine? The results were practically immediate. I plan to experiment with this more, much to the boyfriend's dismay of having to be my tester, haha. Curious if anyone else has any similar experience they can share with me?
Thanks!

Polar Bear
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Re: Just found something that works for me

Postby Polar Bear » Fri Feb 10, 2017 1:11 pm

Most folks find that sex/orgasm will eliminate RLS symptoms, at least for a while - I guess your enjoyment with regard to your back is all within the physical pleasure diversionary factor.
Enjoy :)
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Just found something that works for me

Postby ViewsAskew » Fri Feb 10, 2017 8:30 pm

yeah, enjoy! Hope it works for a LONG time.

As to why? No idea. Random - and I mean random - thoughts follow.

Distraction? Dopamine? Also, enough people here have mentioned that the only way they can get relief without meds is to sleep on stomach that I remember it - could somehow be part of it. The spinal cord and what is in it is implicated in RLS, but not sure how that would factor in with scratching. Massage works for a lot of people, but this sounds different. Another things enough people have commented on that I remember, is that the lower back is often involved in some way. People get relief from a variety of things involving the lower back, such as TENS devices, that somehow that could be implicated. So much we do not know...and so easy for us to get relief by something for a short time, only to have it fail later. We never know if is was chance and unrelated, related but placebo, or related but stopped working.

My memory is not nearly as good as it used to be - I used to remember almost everything anyone wrote on here. Now I have Swiss cheese memory - never know what fell threw the holes. But, I don't recall hearing anything about scratching the lower back. You could always search just for fun to see.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

legsbestill
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Re: Just found something that works for me

Postby legsbestill » Fri Feb 10, 2017 8:37 pm

What are you like, PB? This sounds more comforting than carnal. If the relief was sexual (which I admit can be pronounced albeit extremely temporary - at least in my case - insert imaginary scarlet emoji as I ludite and can't get real one in), the boyfriend would not be dismayed at the prospect of repetition.

legsbestill
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Re: Just found something that works for me

Postby legsbestill » Fri Feb 10, 2017 8:50 pm

Tbascokat, I find that lying on my front provides relief but haven't tried the tickling thing. We are all so different but perhaps it is a sort of counter-stimulation effect? If your boyfriend becomes very reluctant you could always try investigating the effectiveness of PB's proposition - at risk of sounding machiavelian (and flippant), you could even trade him extra sex for more tickling. It could be a win/win for you!

Polar Bear
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Re: Just found something that works for me

Postby Polar Bear » Fri Feb 10, 2017 9:50 pm

I also find that lying on my tummy will give RLS symptoms some respite but not for long). My legs have to be bent sharply at the knee with feet up in the air. I shuffle myself whilst on my tummy, down the sofa, getting my knees tucked into the angle of the sofa seat/arm and use that to get a good sharp knee bend and to support the angle.
Must be careful though as too much stress and dip in my lower back is uncomfortable.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Yankiwi
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Re: Just found something that works for me

Postby Yankiwi » Fri Feb 10, 2017 9:53 pm

I'd like to hear how the tickling works after 30 days, not one or two. Many things seem to help for one or two days.

badnights
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Re: Just found something that works for me

Postby badnights » Sat Feb 11, 2017 9:21 am

"I wonder if for some reason this endorphin release is also accompanied by dopamine? " No need to wonder that, you already have your explanation. One of the main meds used for WED/RLS - the most effective, given the frequency of augmentation with dopamine meds - is opioids. Anything that stimulates production of endogenous opioids is likely to help (including orgasm and exercise, as long as the latter is not counteracted by anything like maybe excessive cortisol if you exercise too hard).

Counterstimulation or the pain-gate theory in which WED sensations are blocked by filling the sensory pathways with something else (scratching) is also probably involved.

The tummy thing is interesting but I have no theory to explain it. I first heard of it from my husband (ex) who slept better on his stomach with his feet hanging off the end. (He had RLS/WED. At that point in my young life, I thought everybody did, if I bothered to think about it.) I found no benefit from that, but now, years later, I find I can often fall asleep during mild symptoms by lying in froggy position - on my belly, torso supported by many pillows, knees bent tightly and thighs spread wide at the hips like a frog, toes bent under, wrists bent under pillows and arms secured.

As sensations reduce, toes can straighten so tops of feet are on mattress (or electric heating pad .... ah....), legs can straighten, eventually I can roll off to one side while keeping one leg flung over a pillow. If I'm lucky I can pass into deep sleep from there. If not, I'm just happy I got those few extra minutes or half hours of semi-sleep.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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SLEEPY ANGEL
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Re: Just found something that works for me

Postby SLEEPY ANGEL » Tue Feb 21, 2017 10:07 pm

Re: Just found something that works for me...
by SLEEPY ANGEL... I can't comment on how this scratching of the back works and can't try it myself because I have no one to do that for me; however,
I came to this particular page because I was going to write about something that surprisingly gave me relief right away when I woke up early (4 AM) and had rls... didn't have the energy to start walking around. So I rolled to my back, bent my knees and brought my heels close to my butt, then flexed my feet so that I pointed my toes up sort-of towards the ceiling. I held that position tightly for about 20 seconds, then lowered my toes... relaxed a little...then, once again forced my toes upward to hold for 20 seconds. Off and on for about two minutes. It stretched my calves on the backside I guess. I was able to get rid of the rls coming badly and went back to sleep. MUST try this every time I get the chance, instead of walking around. I hope that tbascokat will keep writing about her experiences with scratching of her back... hope it continues to HELP!--- for more than a couple days!

Polar Bear
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Re: Just found something that works for me

Postby Polar Bear » Wed Feb 22, 2017 10:14 am

Glad this helped you Sleepy Angel. Any help is wonderful.

Not sure that it would be an easy or suitable exercise for sufferers who might be dealing with joint problems.

It's always good to hear of what has helped another.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

SLEEPY ANGEL
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Re: Just found something that works for me

Postby SLEEPY ANGEL » Wed Feb 22, 2017 7:40 pm

by SLEEPY ANGEL---
You are right, Polar Bear... our individual ability to bend (or contort ourselves) will always enter into the picture.
THERE IS SOMETHING ELSE THAT I USE and have used for about ten years, but perhaps I should see if it belongs in a
different Forum since it is a Device...? I'll mention it here and maybe elsewhere if necessary: Believe me, I don't sell
this item. I bought it when I first realized I needed to rub my legs. It's called a Medi-Rub Massager, made in America---
was maybe $200...? Don't recall.... It sits on the floor and when you place your feet on the slanted rubber foot pad and
turn it on, it gives a vibration that travels nearly to the knees up the legs. About 5-8 minutes feels great and I can go
back to sleep. MIGHT help someone? I love it, once or twice per night: www.medirubmassagers.com

Rustsmith
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Re: Just found something that works for me

Postby Rustsmith » Wed Feb 22, 2017 9:41 pm

SLEEPY ANGEL, is interesting that you should mention the foot massager today. I have joined a clinical trial that is evaluating the potential benefits of medical foot massagers for RLS. I find out tomorrow if I get a foot massager or if I am a control. 50-50 chance that I get the massager. They are also looking at whether the addition of a heating pad on the legs would be of added benefit.

I think that the study is being paid for by a different foot massager company, but the pictures of the units look so similar that it could be the same product sold under two different names.
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.

Rustsmith
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Re: Just found something that works for me

Postby Rustsmith » Thu Feb 23, 2017 6:13 pm

I didn't get the foot massager in the trial :( . But I did get a heating pad to use each night before bedtime, so at least I didn't end up as a control subject.

When I spoke with the principle investigator, she said that the reason why they were running the trial was because of all the anecdotal reports that they had received about the benefits of vibrating foot massagers. And of course, the approval of the Relaxis pad by the FDA was also a consideration.
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.

dcb
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Re: Just found something that works for me

Postby dcb » Fri Feb 24, 2017 7:21 pm

Hi. Brand new here. I also sleep way better on my stomach -- takes the pressure off my lower spine and legs which seems to set off the twitches.

BUT -- the best thing by far is that last year we got a fancy pants bed that raises the head and foot (separately or together). None of that helped as I'd hoped but the bed has a slight vibration feature that you can focus on your legs (lower third of bed), torso or shoulders. It's a godsend. I turn that thing on and it's just enough sensation that my brain focuses on it rather than what's happening in my legs. Incredibly comforting sleep with a low dose of clonazepam. Really expensive bed but if you can afford it it's a huge help.

Now I just need to rig up something similar for the car seat, airplanes and my desk!

legsbestill
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Re: Just found something that works for me

Postby legsbestill » Fri Feb 24, 2017 11:13 pm

Hi dcb and welcome.
Your vibrating bed sounds a little like the Relaxis pad which is created specifically for rls and which I currently have on trial. The pad is also eye-wateringly expensive!


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