Miracle cures.: This is not really a... - Restless Legs Syn...

Restless Legs Syndrome

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Miracle cures.

lorri214 profile image

This is not really a question. Just have to let off steam. I am so tired of reading or hearing about all these miracle cures for rls. I try everything with the hope of some kind of miracle. I purchased the relaxis pad for $1000., all sorts of rubs, supplements, cbd gummies, medical marijuana, etc. Spent a fortune and have not found my miracle. I guess I will keep trying though because this rls is the worst thing you can have. No one can understand unless you experience it! The other night I was out walking at 10 pm because I could not stay still. Please someone find us a miracle!!!

108 Replies

I hear you! And I understand.

I have a buprenorphine patch that keeps the symptoms quite well in check but it comes at a price. And of course it is no cure. If only someone would start looking into why we don't get enough iron in certain parts of our brain, maybe a cure could be discovered in due course.

Meanwhile, hang in there!

rrggrr profile image
rrggrr in reply to LotteM

LotteM ... just gave up on Belbuca (Buphenorphine). Curious, what is your experience? I quit because it turned me into a sleep-aholic zombie.

LotteM profile image
LotteM in reply to rrggrr

Well, my case is not that bad. I just can get around to starting and continuing doing things. Little focus, a bit brain fog like. And I feel tired most if the time. From late morning onwards I feeI can sleep, but actually falling asleep is difficult and the sleeping or resting helps only marginally.

Currently I am trialling methylfenidate/Ritalin to combat the fatigue. It helps in the morning, but the downside is that even when I take follow-up doses I need to sleep and most of the time do sleep 1-3hrs in the afternoon. It feels like a counter-effect. I will continue for a while and see whether it settles.

LotteM profile image
LotteM in reply to LotteM

Rrggrr, what dose of Belbuca where you on? I am on the lowest patch dose and still get this side effect. 😒

And what do you do or take now to deal with the RLS?

WideBody profile image
WideBody in reply to LotteM

In a recent paper I read which I can't find it (Adenosine Hypothesis of RLS) discussed RLS being caused by a deficiency of the CNS. My two favorite doctors wrote this paper in 2008.

pubmed.ncbi.nlm.nih.gov/175...

LotteM profile image
LotteM in reply to WideBody

Correct. Not enough iron in certain parts of the brain. But why? Nobody seems to address that.

But I must admit it has been a while since I read the adenosine papers. Also, they were not very easy to read. Far too much technical language, even for a seasoned scientist 😉.

WideBody profile image
WideBody in reply to LotteM

I understood it to mean both peripheral Nervous System and Central Nervous System. The thing I don't understand is why iron deficiency is such a well understood cause and mechanism for RLS, yet it does not help some people? It seems we are lumping more than one type of RLS into a single category.

LotteM profile image
LotteM in reply to WideBody

I think because it is hard to replenish the iron in the affected parts of the brain. Iron does get into the brain but as far as I have been able to find out and understand that mechanism is only unraveled in very general terms. Far from specific enough to understand why there does not seem to be enough iron in the substantia nigra of people with RLS.

Here is an review from 2014 on the subject. The above is from the top of my head, the paper may give different and certainly better information:

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

Hope61 profile image
Hope61 in reply to LotteM

Is it worth having an iron infusion ?

WideBody profile image
WideBody in reply to Hope61

For me, an iron infusion was the best thing ever for my RLS. I know take oral iron supplements.

SueJohnson profile image
SueJohnson in reply to Hope61

What was your ferritin and transferritin saturation percentage?

Hope61 profile image
Hope61 in reply to SueJohnson

ferritin 22 saturation 19

SueJohnson profile image
SueJohnson in reply to Hope61

Absolutely ask for an iron infusion with your saturation less than 20 and your ferritin so low.

Hope61 profile image
Hope61 in reply to SueJohnson

Oh yes I have it schedule for 5/16. I had two infusions two weeks apart about 5 years ago but other than radiant the ferritin levels way up for a couple of months it didn't seem to do anything but I was on mirapex at the time. So maybe this time it will do something

Niepowiem profile image
Niepowiem in reply to Hope61

did nothing for me and some ppl report ugle permanent skin discoloration tattoo like look

Do you keep an intake diary?

lorri214 profile image
lorri214 in reply to Madlegs1

what do you mean intake? food or meds. i have kept many drug diaries years ago. no more though.

Madlegs1 profile image
Madlegs1 in reply to lorri214

I mean a record of all things put in your mouth-- drink ,food and medications.After keeping the diary for a few weeks ,hopefully you may notice coincidences between a particular item and an awful night of restlessness.

For me it is msg, artificial sweeteners, high salt meal and many more.

There are many medications that set off rls-- such as antidepressants, antihistamines and statins.

I totally agree with Madlegs. Except in my case, the diary took months, not weeks. Everything I put in my mouth-even topical treatments (like peppermint rubs, since our skin absorbs these things and they get into our system via the skin), all activities during the day, and a clear description of my symptoms and the time of day they happened, as well as their duration. Back when I first discovered this site and learned to keep a diary, I was no longer sleeping and was having symptoms nearly constantly, so I had to keep my “diary” with me at all times. It was exhausting but also empowering. We are all so different, so you sort of have to do something like this to figure out your own triggers and the things the help you, specifically.

what did you learn from this diary. seems like a lot of work.

It was a lot of work. But honestly it was a relief, feeling like I was channeling my efforts toward a potential solution. Before finding this site (and learning about a methodical way to approach our illness), I was in utter despair and completely exhausted. I felt so confused about what was happening in my body and why it was not letting me sleep. I was crying all the time. Especially whenever I thought of trying to go to bed. I saw immediate results with the diary. They were baby steps, but they were helpful. And when you’re not sleeping at all, suddenly being able to get an hour or two of sleep feels like a miracle.

You asked what I learned. I learned, over time, what I, personally, needed to do to get a full night of sleep. I don’t necessarily like the changes I’ve had to make in my lifestyle, but I LOVE sleeping and I love feeling like getting good sleep is within my power. That’s something I’ll not take for granted again. No “fix” is likely to work forever and if/when my current routine begins to fail, I’ll pull out the diary and start again.

Great result. Powerful that you kept at it and defined what was causing the bother!

Once I found a doctor willing to prescribe low-dose (10 mg/daily) methadone therapy, my RLS symptoms vanished. Immediately.

Merny5 profile image
Merny5 in reply to TheDoDahMan

So you are not taking methadone any longer? I am on the fence about switching to methadone from oxycodone.

TheDoDahMan profile image
TheDoDahMan in reply to Merny5

Sorry, I didn't mean to imply that it "cured" RLS, just that the methadone has eliminated my symptoms, and that as long as I continue to take it, my symptoms continue to be eliminated. And from all that I've read, methadone is a superior opioid for RLS than is oxycodone.

Lolly53 profile image
Lolly53 in reply to TheDoDahMan

Same story for me. Has been a game changer and I am so thankful for it. Hard to fine a doctor who will agree to prescribe it though.

TheDoDahMan profile image
TheDoDahMan in reply to Lolly53

So, you've already switched over to methadone then?

Lolly53 profile image
Lolly53 in reply to TheDoDahMan

Five years ago! Fortunate to find Dr. Ondo in Houston Texas, a neurologist who is published and an expert in RLS and related sleep disorders. Am currently on 7.5 mg Methadone daily,, up from 5 mg which did well for me for four years. I am so thankful to be able to live relatively RLS free, with very rare symptoms when I don’t take the medication. I wish more people had access and more doctors could learn about it.

Merny5 profile image
Merny5 in reply to Lolly53

Were you on oxycodone prior to the methadone.

SueJohnson profile image
SueJohnson in reply to Merny5

Is your RLS under control?

Merny5 profile image
Merny5 in reply to SueJohnson

Hi Sue, I’m not sure if you were asking me or Lolly53. Unfortunately, 20 mg. of oxycodone just doesn’t cut it for me. I’m just afraid that if I switch the methadone won’t work. I know methadone is pretty much the end of the road and the scares the hell out of me.

SueJohnson profile image
SueJohnson in reply to Merny5

Yep I was asking you. Looking back at your previous posts I see that you were on 900 mg of gabapentin. Are you still on gabapentin? If not why did you stop?

Merny5 profile image
Merny5 in reply to SueJohnson

No longer taking gabapentin. I think I moved up to 1800 mg. near the end. It didn’t help and made me lethargic

SueJohnson profile image
SueJohnson in reply to Merny5

Have you tried dipyridamole

Merny5 profile image
Merny5 in reply to SueJohnson

No I have not. Is it used off label for RLS?

SueJohnson profile image
SueJohnson in reply to Merny5

Yes and it has been very effective in eliminating symptoms in many people. Google dipyridamole and RLS. Worth a try.

Merny5 profile image
Merny5 in reply to SueJohnson

Thank you

gabapantine works. LDN works

Joolsg profile image
Joolsg in reply to Niepowiem

Not for everyone. Gabapentin did nothing for my RLS.

Hi Lorri, I also had tried so many things over the years and all had failed. I was getting maybe 2-3 hours of solid sleep each night. I now use a massage gun which cost me about £60 and use it on my legs each night for about 7-8 minutes and it really does help. I now sleep at least 6-7 hours most nights. It doesn't work all of the time, but it is the best thing I've tried and I've been using it for at least 7 months now. I know different things work for different people, but it's definitely worth a shot. I wanted to try something instead of medication as I was on Pramipexole for over 12 years which ended up making my symptoms 10 times worse. I still get restless legs every night but but once I've used the massage gun, the restlessness goes away.

Hope61 profile image
Hope61 in reply to barbarylane

where did you buy something like that? do you use it before the symptoms stop or during?

barbarylane profile image
barbarylane in reply to Hope61

Hello, I bought my massage gun on amazon. I usually use it just before going to bed before the symptoms start. 2 minutes on each calf muscle and then 2 minutes on each thigh muscle, 8 minutes in total. There are multiple heads, I tend to use the round ball head. Also, if my symptoms start before going to bed, I'll use it on the area affected and the restlessness will go away. Sometimes I do wake up through the night but I'll give my thigh a bit of a massage and I'm straight back off to sleep. It has really helped for me.Here's the one I bought.

amazon.co.uk/Medcursor-Perc...

they don't have the exact same one in the US but this one is very similar

amazon.com/Medcursor-Percus...

Hope61 profile image
Hope61 in reply to barbarylane

Thank you ! I just ordered it , it is worth a shot. Gabby is work 75% of the time for me and with this maybe I'll be 90% I appreciate the info and link !😀

barbarylane profile image
barbarylane in reply to Hope61

You're welcome, I hope it works for you as it does for me

TheDoDahMan profile image
TheDoDahMan in reply to Hope61

Hi, Hope(s!),

Please let us know how it works for you. I may buy one too!

SueJohnson profile image
SueJohnson in reply to Hope61

How much gabapentin are you on?

Hope61 profile image
Hope61 in reply to SueJohnson

200-300 mg

SueJohnson profile image
SueJohnson in reply to Hope61

It's no wonder that it only works 75% of the time. That is a very low dose. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." Ask your doctor for 100 mg capsules and increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, take it at least 3 hours before gabapentin as it interferes with the absorption.of gabapentin. Have you had your ferritin tested? If so what was it? Increasing it to 100 or more reduces symptoms in 60% of people. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't at

Https://mayoclinicproceedings.org/a...

Hope61 profile image
Hope61 in reply to SueJohnson

I was o. 1300 mg and it made me very sick and had bad side affects. I was being over medicated and flat horrible. I feelGood now and suffer very little compared to what I went through on Mirror

Hope61 profile image
Hope61 in reply to Hope61

On Mirapex sorry for the typos

SueJohnson profile image
SueJohnson in reply to Hope61

Understood. Have you tried dipyridamole?

TeddiJ profile image
TeddiJ in reply to barbarylane

Hi, Barbarylane. I am very interested in your comments because you took PRAM for 12 years. Could you tell me how many mgs you took?

Also-how long did it take for you to get to a place where natural solutions, like the massager, worked for you? Was it weeks after withdrawal? Months/a year after?Thanks for your info!

barbarylane profile image
barbarylane in reply to TeddiJ

Hi, I was on the maximum dosage of PRAM (3 tablets a day) but I started augmentation in my arms and legs. It was hell, so I decided to wean myself off the tablets slowly, which took about 6-9 months. It was hard but I didn't want to go back on the PRAM after the horrible effects it was having on me. I then decided to try out natural remedies, like turmeric, magnesium, iron etc... All of them stopped the restless leg briefly but it came back. I was having sleepless nights for a couple of years, thrashing about in bed but a friend suggested the massage gun to me last year. So I thought I'd have to give it a go, and if it didn't work on my legs then I could also use it for tense muscles. It does really help me, it's not the perfect solution as sometimes it doesn't work as well as other nights, but I am having much better sleep without medication.

in reply to barbarylane

You don’t know the max dose do you? Prami is really only recommended 3x a day for Parkinson’s, but that’s the first thing you see on the internet when you Google it. It’s once a day a few hours before bed for RLS. It’s interesting that you joined one month before Medcursor was incorporated. Are sales down? Just sayin…

barbarylane profile image
barbarylane in reply to

Hi, I'm not sure I like what you are trying to suggest. I'm just sharing my story, and would like to try and help others by not going down the medication route as I know it was hell and I wouldn't want to go back on the tablets again. It was a few years when I came off PRAM so I don't remember what dosage I was on, all I know is that my GP said that I could go up to 3 max per day, which I did, as 1 or 2 tablets didn't help. I had nausea every morning and when the augmentation started I knew I had to give the tablets up. The only reason I sent the link to the Medcursor gun was because I knew people would ask what gun did I use. It really frustrates me when there are people like you on forums like this, when all I am doing is giving someone a bit of help, as I know the gun works for me. Not always, but it's been much better than anything else I have tried. So please try to be a bit kinder in your responses.

in reply to barbarylane

Massage gun aside I think what we really need to know is what your doctor gave you to help you come off the DAs or did you do it like most - cold turkey?

barbarylane profile image
barbarylane in reply to

I did it cold turkey. I work from home so if I had a bad night sleep it wasn't affecting me getting to work. So I was lucky really. It took at least 6 months to ween myself off the tablets, reducing it by half a tablet at each stage.

in reply to barbarylane

Yep you’re the real deal. My apologies. Most people on here know the best way to come off max dose of a DA after 12 years of use is to ween off slowly and stop cold Turkey - no more drugs at any point. Glad your GP knew what he was doing. Taking another drug to help you get off only prolongs the agony. Very happy for you. I might give up the iron and buy one myself.

barbarylane profile image
barbarylane in reply to

It's definitely worth a go. As I said it's no miracle cure, but it really has helped a lot for me over the past 7 months or so.

in reply to barbarylane

I think I’m gonna get Amazon’s bestseller. Not Medcursor but I always go with Amazon’s Bestseller in category. Visit the DDVWU Store4.8 out of 5 stars497 Reviews

Massage Gun Deep Tissue Muscle Massager for Pain Relief, Upgrade Super Quiet Portable Handheld Relaxation Electric Sport Massager(Black)

#1 Best Seller in Magnetic Therapy Products

Massage Gun Deep Tissue Muscle Massager for Pain Relief, Upgrade Super Quiet Portable Handheld Relaxation Electric Sport Massager(Black)

barbarylane profile image
barbarylane in reply to

Sounds good, I like the fact that it is super quiet too. Mine isn't the quietest but does the job. Might upgrade if the motor ends up burning out.

lorri214 profile image
lorri214 in reply to barbarylane

I just got a massage gun from Amazon for my rls. Curious when you use yours. Do you use it at bedtime, before a rls attack or during a rls attack. I need some tips. I tried it tonite and it didn't help that much.

TeddiJ profile image
TeddiJ in reply to lorri214

Hi. This is what she said above: " I usually use it just before going to bed before the symptoms start. 2 minutes on each calf muscle and then 2 minutes on each thigh muscle, 8 minutes in total. There are multiple heads, I tend to use the round ball head. Also, if my symptoms start before going to bed, I'll use it on the area affected and the restlessness will go away. Sometimes I do wake up through the night but I'll give my thigh a bit of a massage and I'm straight back off to sleep."

barbarylane profile image
barbarylane in reply to lorri214

Hi Lorri, sorry I've not replied sooner. I've got Covid at the moment and haven't been too good. Today is the first day that I feel a bit better. I generally use the gun as soon I get into bed before any symptoms start. I use the round head on the second level, I think it's 2400. I start with both calf muscles slowly working from the ankle upwards, in a straight line. I may hurt a little as your muscles might be a bit tight, but bear with it and over the next few days your muscles will soften up and won't be as tense. Then I start working on the thigh area, from the side of the thigh by the knee area and work upwards in a straight line, working to the front of the thigh. 2 minutes on each part. Keep going with it for a week or so, as it may take some time. As I've got Covid at the moment, I've been in bed a lot, so last night the symptoms started earlier than normal, so it gave the area a blast of the massage gun and after a few minutes or so, it went away. Hopefully it'll do the same for you but as we know, everyone is different. Good luck! Michael

lorri214 profile image
lorri214 in reply to barbarylane

Sorry to hear you got covid. Thanks for your information. It is very helpful. Last night I woke up with rls. I used the gun and eventually the rls went away. I am hopeful. The gun is very quiet. I will keep at it. Hope you get better real soon.

barbarylane profile image
barbarylane in reply to lorri214

Thanks so much, starting to feel better in myself today. Glad to hear the massage gun is helping. Wouldn't it be lovely to be able to sleep without having to do any of this.

SueJohnson profile image
SueJohnson in reply to

You imply that you don't want any more drugs but gabapentin is now the first line treatment for RLS. I take gabapentin after augmenting on ropinirole and it completely controls my symptoms. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know about it including the latest treatment and refer your doctor to it at

Https://mayoclinicproceedings.org/a...

lorri214 profile image
lorri214 in reply to barbarylane

I appreciate all of your information.

barbarylane profile image
barbarylane in reply to lorri214

Thank you. Anything to help.

lorri214 profile image
lorri214 in reply to barbarylane

I just looked up the massage gun on Amazon. There are several to pick from. Which one do you use.

barbarylane profile image
barbarylane in reply to lorri214

Hi, I bought a Medcursor gun, but I think they are all pretty good. Just check the reviews before you buy one. Here's a link to an article regarding massage guns and restless legs. restlesslegssyndrome.sleep-...

TeddiJ profile image
TeddiJ in reply to barbarylane

Thank you! This is very interesting because we are told quite often that after many years on DA's we won't be able to rely solely on natural methods. That we must use gabapentin, horizant, etc. or an opioid. You are one of the few I have read about who takes nothing after a long stint on a DA.

So, what *I* really need to know is: how many mgs. Does .125 sound familiar? It might be standard.

Sorry about that test question post, too-it was ridiculous but glad to see the apology. It is quite clear that you were suffering, on a journey, and trying to help the rest of us!

I myself was gifted the Theragun, which I think is considered top-of-the-line. It is very nice, for sure. I have used it here and there but not in the way you do. So, thank you.

So far I can't seem to find anything that works naturally. But, I haven't been off the DA's long enough without also coming off of an opioid (withdrawal causes awful RLS so you can't tell where your baseline is).

That is why I was wondering if you knew how long it took you to get back to your baseline rls. Some people say it can take up to a year, and some say it can't happen at all.

in reply to TeddiJ

I don’t know that you’re gonna get an answer any time soon from her.

You remind me of Dorothy in the Wizard of Oz (and I am the wicked witch) who doesn’t realize she’s home. I don’t care what Dr. B said, you have to trial what your RLS is like without the HRT. You can go right back on if your RLS does not improve significantly.

I think you should stay in touch with RKM7. healthunlocked.com/rlsuk/po...

You two are really the dynamic duo in terms of cobbling together a road map for recovering from the DAs. RK suffered too much at first. Unacceptable! Especially in light of the fact that you discovered a six month period of methadone got you thru what was a living hell for RK. Granted you were tortured with the fear and uncertainty of refills but other than that the methadone worked out well for you. Then using Kratom to get you through those bad days coming off the methadone was brilliant. So if people would combine what you did with what RK is doing now (and has been for quite a while) I think that they will have a lot easier time coming off the DAs.

Mind you, people with unbelievably severe RLS from a young age or people with certain diseases may have to stay on the methadone long term, but everyone else??? I say at least try limiting the methadone to 6 months. Plus, doing the things that RK is might enable even the worst of the worst to lower their dose of methadone or other opiates.

I believe she was hesitant, but RK had to come off the statins completely because she realized that no matter what time of day she took them, they were worsening her symptoms. I think the same is true with you and the HRT.

The problem is the hesitancy of doctors here and in UK to prescribe methadone. Maybe if people tell their doctors they just want it for 6 months (asyoudid) as part of a protocol to transition to a more comprehensive non-opiate based treatment plan they would have more success in getting a script for the methadone or some other opiate? Though I think methadone does the least harm to our receptors and even allows them to crawl back to baseline post DA - more so than some other opiates.

I love you but you’re holding up the show. You’re the last of the long suffering, Fast Five: PoorRichard, WideBody, RKM7, Sher78, Teddi; to find near nightly relief without DAs or opiates.

This is my last incarnation. I’m going to message you my private email and RK as well. I’ve run out of ideas and more people on here are finding relief than not. Plus our country has lost its collective mind. When the highest court in the land thinks it’s a good idea to allow a 12 year old girl raped by her father be denied an abortion (by a bunch of old white men/religious zealots in the government of red states) then all really is lost. I want to get on the next flight to DC and scream my frickin head off.

TeddiJ profile image
TeddiJ in reply to

Hi! I was able to talk my neurologist into methadone for DA withdrawal for only 2 months. When I went through withdrawals, I then had to find another doctor (which was SO VERY difficult, even in a huge city!). I had 4 more months and was cut off again and forced to withdraw with Kratom (for those reading who don't know).

I did try to cut out the HRT but it didn't seem to help. Not sure if I did the experiment correctly or not though.

Great-I will email you and thank you very much for the above tips and comments.

barbarylane profile image
barbarylane in reply to TeddiJ

Hi TeddiJ, sorry for the last reply, I've got Covid at the moment so haven't been able to respond earlier. Still feeling like crap but at least I'm up and about now. I will try to find out the mgs I took for PRAMS. I am sure I kept an old box of the tablets for future reference (like now) but I'll have to start the hunt to find it. I'm not really sure how long it took to get back to my baseline RLS, as I remember only a couple of years ago that my legs would drive me crackers all night for a while. It certainly has calmed down now, but not as perfect as I would like. I still have to sleep in a separate bed to my partner, but hopefully one day we'll be able to sleep together again.

I really feel it for everyone who suffers with RLS, I don't think a lot of people give us the sympathy we deserve. I'm just glad I managed to go cold turkey without having to be put on to something else.

Michael

TeddiJ profile image
TeddiJ in reply to barbarylane

so sorry you have Covid! oh, no.

thanks for the reply but you don't have to look for the box. I bet they were .125.

yes, you did great getting off of the PRAM without having to use an opioid! Sounds like it was brutal-you must be a very strong person.

i know-it is impossible for anyone who doesn't have it to understand!

right now I am using THC and kratom to get through the nights. I am avoiding starting an opioid again, after going through quite a lot to get off of one. that is why i was so interested in your journey-you were on a DA for a long time, too.

anyway-feel better soon! hopefully you will find a good solution on this forum so that you can get back to one bed, too!

lorri214 profile image
lorri214 in reply to TeddiJ

I am trying THC. What kind are you using. I have to find the right strain.

TeddiJ profile image
TeddiJ in reply to lorri214

You should get the indica strain. (Definitely not Sativa.) From what I see on here: ideally you should get it with a balance of THC to CBD and it should have some CBN (for sleep, I think).

I am using a very strong indica with a thc of 73%. It works for rls for a while and definitely makes you sleep. But, it is too strong to repeat in the middle of the night when symptoms return.

So, be sure to look at the amount of THC-if there isn't any at all listed, it probably won't work for your RLS (I have bought indica in the past with no thc listed). If it is too strong, you can only use it once or else you might lose the entire next day.

Hope this helps as I have been trying to find the exact right THC product, too!

FiziUK profile image
FiziUK in reply to barbarylane

I bought a massage gun when I started getting leg cramps at night - probably caused by exercise (no amount of stretching/magnesium/electrolytes/salt etc helped). I very soon realised that the massage gun also helped my restless legs. A couple of things for new users to look out for is amplitude (how deep the head travels) and speed (obviously how fast it goes and if it's variable). I can't remember what the minimum is any more, but google will help :)

Hope this helps. I've only recently found this forum, but many thanks to everyone who tries to help. You're lifesavers and given me lots of new things to try. Glad the massage also worked for you barbarylane.

lorri214 profile image
lorri214 in reply to FiziUK

I just got the massage gun last week. Not sure how well it works. Last night I was having a bad night with rls. I kept trying the massage gun, but it really did not help. Do you ever use it once a rls attack starts. Or is it too late then.

FiziUK profile image
FiziUK in reply to lorri214

I haven't tried once an attack starts. I usually get up, do some housework, even do the ironing, or anything rather than lie there thrashing about - that's just me - I get cross!

I use the massager just before I go to bed. I start with my calf muscles, then my thighs (hamstrings and quads) until they are relaxed. I don't spend more than two minutes on each muscle group.

If I can keep the RLS at bay, and get off to sleep it doesn't wake me up until early morning (this morning it was 6am) and I got around 6 hours of uninterrupted sleep.

I also take Ropinirole but had to cut that back as it caused me to eat compulsively (something I was unaware might happen).

lorri214 profile image
lorri214 in reply to FiziUK

I have the problem with eating too. At night when a rls attack occurs, I cant stop eating. Its terrible. I cant lose weight!!!

SueJohnson profile image
SueJohnson in reply to FiziUK

Have you thought about coming off ropinirole? Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment.

Https://mayoclinicproceedings.org/a... Dopamine agonists like ropinirole used to be the first line treatment for RLS but no longer are. Gabapentin is. It completely controls my RLS symptoms. Also, have you had your ferritin checked? Improving it to 100 or more helps 60% of people with RLS and in some cases completely controls their symptoms.

FiziUK profile image
FiziUK in reply to SueJohnson

Thanks for mentioning it, but yes, I’m just about there. I was taking 4 x 0.25 mg at night, and I’m down to the last 0.25 mg. Fortunately, I haven’t been taking it for long as it didn’t agree with me. I’m not sure what my next step is going to be.

I’m 61, but extremely active, always out on the bike etc. In fact we are off on a cycling break in the next week or so. I find this helps tremendously with just the whole stress of the thing, as does going to bed with fatigued muscles and using my massager which (for me) keeps the RLS away long enough to get to sleep. It’s all something that I’d do anyway, so I’m lucky in that respect.

It’s funny, I remember in my twenties (when Jane Fonda was doing her “feel the burn” type workouts LOL) that crazily doing heel to toe lifts until my legs gave out stopped my RLS for a while so that I got to sleep - my version of pacing, I guess! We’d never heard of RLS in those days, but my mother was also a sufferer. Wouldn’t wish it on anyone.

Of course, the clock is ticking, and I won’t always be able to manage things the way I do now, so I’m definitely looking for a different path. My GP is largely ignorant regarding the latest treatments, but very open to helping and suggestions. So, I’ll probably look at iron first, although I’d be surprised as I have loads in my diet.

Anyway, I’ve waffled on enough! - but thanks for asking.

SueJohnson profile image
SueJohnson in reply to FiziUK

That is great that you have come down so far and are so close to coming off it. Do check out the Mayo Clinic Algorithm and I highly recommend gabapentin for your next path. 1) If you do decide on gabapentin beginning dose is usually 300 mg gabapentin. Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. 2) Having enough iron in your diet is often not enough for people with RLS. When you see your doctor ask for a full iron panel. Fast after midnight and have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100 and your transferritin saturation to be over 20% but less than 45%. Improving it to that helps 60% of RLS patients. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you may need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with its absorption. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months.

Is your RLS under control?

I know what you are saying. The one that drives me crazy is the ointment you rub on your legs or the neurologist who proclaims to be a RLS specialist and doesn't know jack about the condition.

It is soul destroying, I also have nearly tried everything and am now dependent on opioids which no longer help. Mine came on at 10pm and I was walking inside till 2am, totally exhausted as I use a walker.Hang in there….we don’t have much choice 😊

SueJohnson profile image
SueJohnson in reply to Nanpat

Have you had your ferritin checked?

Nanpat profile image
Nanpat in reply to SueJohnson

Yes I have , it’s ok…..105

Hi, lorri_ I emphatize with your desperation on your RLS;

_ with no arrogance e lots of humilities (demanded as a kind of protocol for those who use Energy Techniques), I must say I found out a something nice for my RLS (I have also UARS), since 7 (now 69) some 2.5 years ago, after trying Pramipexol, Clonazepam, Pregabalin, CDB oils, and more stuffs.

However, definitively it was not a miracle, rather lots of studies and daily tasks to accomplish at night,. Not to cure, but easily battle the crises; the strongest, the easiest! That were the approaches, sort of combination of, which allowed move out of suicide zone :

(a) knowledge on alternative Energy and Psicology Medicine ( my masters: Dawson Church, Gary Craig, both on EFT.... Stephen Co, on Pranic Healing....and Dona Eden, on Energy Medicine). Just in case, to facilitate you could start reading everything from Dawson, starting with his Website EFTUniverse. EFT is the best science-based studied technique these days. Lots of more science-based literature, in particular, on EFT is available;

(b) rigorous Sleep Hygiene, including sleeping in two stages sometimes (0;00 to some 3;30-4:00, interval - up to 90 minutes sometimes - to use the Energy Techniques and meditation during main daily crisis, and back to sleep up to some 8;30hs). My sleep keep having lots of interruptions and wake ups, due to mild nightmares, which I have not been able to manage yet. But life quality end up rather satisfactory since some 2.5 years ago;

(c) Almost all nights, by about 3:00 to 4;00, I have to use those techniques, by a total time of some 25-30 minutes; sometimes I can go without Pranic Sweeping (ultimate shot when needed);

(d) Oh, yes, yet I could go without some medication, I use 0.4 mg of Clonazepam. which helps a lot, without any side effects;

(e) keep studying and trying to improve Energy Medicine and Energy Psycology, at least some two hours all days, for the rest of my life, sure enough;

You might find some more of me on my " Replies". By the way, I am not the only person who somewhat succeded by using those techniques; you might find some more in Gary Craig website, emofree, and Dawson , EFT Universe

all the best and good luck

Same here. Finally got the right specialist. Sleep study revealed I have obstructive apnea in addition to severe refractory RLS. CPAP stops the apnea. Opioids stop RLS but cause insomnia. Medical marijuana, Indica strain in drops, stop the insomnia.

Good luck finding the right physician. It shouldn't be this hard.

lorri214 profile image
lorri214 in reply to Qalba

I have the medical marijuana - the cartridge and mct oils (grape ape) I was hoping for a miracle with that. When I tried it, I stopped the oxycodone because I was told not to take the two together. So I tried the oil and did not take the oxy til 2 hours or so later. Do you mix oxy with marijuana drops. I am going to go back to get a different strain that might help. I have a friend who took the marijuana and whamo the RLS was gone. He said it was a miracle!!! and this is what I was hoping for. The problem is when I take the drops and they are not working, I am waiting for a couple of hours to take the oxy.

Qalba profile image
Qalba in reply to lorri214

I used Indica drops 30-40 prior to Norco. But there is no magic. Repeat in 4 hours because the extended release Norco is hundreds of dollars a month. Even this is no perfect cure. It is still rolling dice every month as to timing and what will help!

lorri214 profile image
lorri214 in reply to Qalba

are you saying you take 30-40 drops before Norco. Or 30-40 minutes before taking norco

Qalba profile image
Qalba in reply to lorri214

I have found that I only need 3-4 drops taken 30-40 minutes prior to the hydrocodone allows me to be sleepy before the hydrocodone causes insomnia. If timing is right, I fall asleep right after taking the hydrocodone!

HI I totally agree!!! You are not alone. I even got talked into a couple of pairs of socks $40 dollars EACH ( VOX LIFE) She insisted so many people were helped by the magnetic force in the socks! Hey, when you are desperate you do do desperate things and purchase items that you pray will change something. She told me they could be returned. But, each time I told her I did not feel a difference she continued to encorage me to try just a little longer. Yep, she had me try right out of the return period. So, when I finally insisted they were not helping and I wanted to return them she told me she was sorry but the return period had ended! Total scam, don't buy them!

Same, I tried all the drugs. Bought the massage tools and weighted blankets, compression socks. Everything worked for a week, but "RLS finds a way." I tried every vitamin, mineral and amino acid. Diets and fermented foods. Warm baths, sauna's and jaccuzi nothing helped.

You are right. The goal is to keep trying, even though cussing seems like a good option.

I could never live with the side effects of DA drugs, in fact it almost killed me.

Gabapentin worked at first but really muddles the thinking.

THC, unless it is edible is probably not a healthy choice. Weed also muddles the thinking.

Yoga helped me cope. Focus and breathing. That is really all we have at 10pm when the lights go out.

It order of what helped me.

Iron - It all started with an infusion. Now I take Iron Bisglysinate (MWF). I need to retest soon.

Vitamin D - It was low and getting my levels higher seems to help

Dipyridamole - pretty much eliminates RLS, side effects... headaches. I am now decreasing my dosage to 225mg a night.

Keep trying... and it you find it. Please report it here, in bold so we all see it!

Hi, lorri214! I've suffered with RLS for many years. I was put on Requip and it helped for many years and I started having a rebound affect. I was then put on Gabapentin and just recently I started having a rebound affect from it, too. My son got me a weighted blanket and that helped some. I'm now waiting on a call from my doctor to see what else I can try. Having RLS is horrible!! I hope you can find something that helps you. My doctor is a Rheumatologist and she's the one that takes care of my RLS.

What sort of rebound effects are you having from gabapentin?

Such an interesting discussion today. I also am glad to be off dopamine agonists (Pramipexole) and am now on 600 mg of Gabapentin nightly. I also take 2.5 mg LDN, 5 mg of Delta 8 gummy ( THC from hemp) and CBD drops. I get adequate sleep without symptoms with about 1 hour of awake time in the middle of the night. My issue is having such a foggy head until at least noon. Do others have this side effect from Gabapentin? I hesitate to increase dosage for fear of being a total zombie the next day.

Yes it can be a side effect of gabapentin for some.

I understand your frustration - I have had RLS for 40 years. Doctors rarely look at food as a cause or as something that may exacerbate RLS even though 50% of dopamine is made in our gut. I recently discovered that if I stay on a low histamine diet my symptoms are very mild and I can sleep for 7-8 hours/night. Prior to this discovery I was lucky to get 3 hours/night. You can Google "list of low histamine foods." Good luck!!

Have you tried gabapentin? I take it and it completely controls my symptoms.

a bottle of red will do, trust me

I’ve had RLS and what feels like total body RLS, for 15 yrs. I believe mine is a symptom from my diabetes related neuropathy of total body. Neuropathy simply meaning nerve damage. I have tried everything spoken about in this group, and the only thing that relieves the agonizing pulling, pushing, tightening, and squirming of this kind of nerve problem or nerve damage is pain killers that get to the root of the nerve. Forget mild medicines. A daily prescribed treatment of OxyContin/ oxycodone or whatever the prescribing doc feels is right for you. For years the RLS just lived in the background and meds sustained my comfort. Then when the gov cut down all doses of opioids to everyone, to protect addicts, my doses were lowered and body restlessness, restless legs, etc returned with a vengeance. I don’t like having to take opioids, and I am absolutely not an addict, but if the choice is opioids or suffer, I take the drugs.

If you or any other readers are not getting relief, unfortunately opioids May be the only answer and doctors are not wanting to prescribe for any pain, or not perscribe enough

Hi Faith, you have the perfect storm going on it sounds like. Neuropathy, an SSRI, and HRT. Any one of those alone could give you whole body RLS, although I’m actually not sure about the peripheral neuropathy.

1mg of melatonin or less and I had RLS in every cell of my body. You’ll never know what is truly making your RLS so bad until you stop the SSRI and HRT for a brief period. Once those two drugs are out of your system you should notice an immediate and substantial improvement. If not, then go right back on. Between drugs like Wellbutrin, klonopin and trazodone I would hope you could keep the OCD at bay while you try the experiment, should you decide to give it a go. Besides, opiates are known to help with OCD as well.

You can’t be pre-disposed to RLS and take an SSRI or HRT, you just can’t. Insulin is a life-saving drug for which there really aren’t alternatives. The same is not true for SSRIs or HRT. The point is not to get off the opiates, but to see if you can make due with less.

Just to note that not everyone finds HRT a problem for RLS!

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