Is there a cure for RLS?: Is there any... - Restless Legs Syn...

Restless Legs Syndrome
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Is there a cure for RLS?

Ruccsack
Ruccsack
64 Replies

Is there any cure to RLS. Constant sleep disturbance day and night until I take 4mg eg 2x2mg of Ropinirole,2 x150mg of Pregabalin and at night I also take Targinact 20/10 for pain.

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Elisse2

Sorry but there is no cure for RLS, so it has to be managed the best way we can. The 4mgs of Ropinerole you take, it might be that you are augmenting on that med, which basically means its not helping and making your RLS worse. Lots of post on here on augmentation and what it is and how it needs to be dealt with which means coming off the ropinerole and trying a different class of med. The search box is where you can type RLS and augmentation and lots of posts will pop up.

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Ruccsack
Ruccsack
in reply to Elisse2

Thank you very much for your reply. I thought as much that the more Ropinirole I took I was making my RLS worse. I am a 70yr who cannot sleep much because of other physical disabilities. But RLS is actually making me even more tired and I catch some sleep when I can until RLS kicks in. ŔLS ruins peoples lives.

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Salgados
Salgados
in reply to Ruccsack

Hi,I am 67years old i have shuffled from to a for most of my life ,just started when I was very young and got it a couple of times a year,but over the years I now have it every day endlessly at night,and on plains,I just run my feet for hours and hope for the best ,any suggestions on tablets anybody,

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Svengolly
Svengolly
in reply to Elisse2

Why r u saying this ??

Most can be cured by raising Ferritin levels .

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gypsy49
gypsy49
in reply to Svengolly

But most control it with their ferritin level even when it is controlled RLS is NOT cured just controlled for a while depending on how well your body stores your Iron Ferritin level .

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Svengolly
Svengolly
in reply to gypsy49

Not sure what your getting at .

If i say food is the cure for hunger .. would you say there is no cure for hunger because you have to eat everyday or the hunger comes back ?

Cure

VERB

1. Relieve (a person or animal) of the symptoms of a disease or condition.

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LotteM
LotteM
in reply to Svengolly

"Most can be cured..." If only that were true! The recent paper of IRLSSG on RLS, iron and oral iron or iron infusion reports towards the end a "puzzling" response rate of about 50%. And it adds that people either do or do not respond, but that so far there is no telling in advance who will respond.

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Svengolly
Svengolly
in reply to LotteM

Plz share link ... thx .

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LotteM
LotteM
in reply to Svengolly

ncbi.nlm.nih.gov/pubmed/294...

There is a link somewhere on that page to the full text.

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macewan13
macewan13
in reply to Svengolly

Most people on this forum have had their ferritin levels checked before they even start on medication. They are posting because that hasn’t worked.

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Svengolly
Svengolly
in reply to macewan13

A- How can u possibly know that ?

B- Even if u r correct ..how is that helpful to the many people who haven't .

C - Most Drs. & even specialists ! ... don't even know to check .

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Abookwriter2

I never knew enough to have my ferritin levels checked and neither did my doctor; he just prescribed gabapentin. I have an appointment tomorrow after a month or so on gabapentin to do so but I have decided to do the RLS.com food cure as it’s worked for deadly cancer for me. I had no idea rlcure.com existed til I started searching Facebook. I’m posting daily for a couple weeks then once a week. I am not taking OxyContin or more dosage of gabapentin.

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nightdancer

That is not true. SOME people can be TREATED by getting Ferritin up, and it is not most people. it is actually only about 12%. But that 12% are lucky. But, if your ferritin goes down again, then the RLS CAN show itself again. The iron/ferritin CAN help as a treatment, but can assure you it does work for the majority. But, they are doing a big ferritin study at Johns Hopkins in the US.

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Svengolly

Firstly ... what is not true ?

Second .. where did you get that 12% figure ?

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nightdancer

It is not true that "most" people can be "cured" by raising their ferritin. 12% comes from the Mayo Clinic, so that is a number I go by. Also, in 28 yrs of managing groups, since you ask, I have met thousands of people with RLS, and I can count on 2 hands and 1 foot the amount of people I have seen who have had their RLS "cured" with ferritin levels being upped. My own experience- my ferritin was at a lowly 6 at my first sleep study. We did 3 iron infusions, 1 week apart, and got my ferritin up to 157! Did not affect the severity of my RLS one bit. So, I can ask back atcha, where do you get your numbers that "most" people can be "cured" with iron. it just is not so, and it is not a cure, it is a treatment. :)

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Kaarina
KaarinaAdministrator

This link may hopefully be of some help to you, Ruccsack: sleepreviewmag.com/2015/02/...

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Ruccsack
Ruccsack
in reply to Kaarina

Thank you for the link very much appreciated.

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Yes; you might be augmenting. If you are you might find your symptoms are less severe after you have gone through the withdrawal process.

Raising iron levels results in improved symptoms for many sufferers.

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bauerannec

I agree with you about raising Iron levals.I have been anemic off and on throughout my life now I'm 69 yrs.,and have restless toes syndrome. I haven't had my iron levels checked ,but I'll probably do some research to find out which iron supplements work the best.

My Doctor did a blood test and discovered that I am extremely low on VitaminD, so he gave me a prescription for VitaminD2, 50,000mg, he wants me to take one capsule per week and then after that ,take one capsule per. month.

So I'm wondering if real low levels of Vitamin D,may cause RLS to be worse.

I hope these things I've mentioned will help everyone that tries them!

Good Luck and God Bless !!

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Svengolly

There is a bit of evidence about D helping . But a ton showing Iron .

Specifically stored Iron ie .. your Ferritin Level.

Ferritin level is what needs to be tested & raised .

I was anemic & got iron infusions within 2 weeks my reeeeally bad ..

year long rls evaporated , as well as 30 years of insomnia !!!

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nightdancer

Well, you are one of the lucky ones. So, was it ONLY getting ferritin up, or are you on dopamine meds, too? I remember you posting about that a few months ago. Seems to me about 3 months ago, you had tried a dopamine med, then asked about other meds because your RLS was so bad and you could not sleep? Did you get the iron infusions in the last 3 months?

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Svengolly

Was on gabapentin etc . with partial relief .

Now no meds , no rls, no insomnia :)))) ...

What is the highest you've gotten your ferritin up to ?

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Elisse2
Elisse2
in reply to Svengolly

Nightdancer has mentioned her level she got to in a comment above on this thread. Can you say what your level is now. ?

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Svengolly
Svengolly
in reply to Elisse2

I remitted all symptoms at ferritin level 70 .

But i have read ( I think from rls specialist Dr. Buchfuhrer ) that some people don't respond until they hit ferritin level 300 .. or even 400 .

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nightdancer

I told you, 157, which is plenty high for MY body according to my sleep doctor and my internist and neurologist. How long ago did you have yours, and how high? And, I take mega dose of Vitamin D, as in the 10,000 units once a week for 10 wks, then lay off for 10 weeks, then go back on, so got that covered too.

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Svengolly

I remitted all symptoms at ferritin level 70 .

But i have read ( I think from rls specialist Dr. Buchfuhrer ) that some people don't respond until they hit ferritin level 300 .. or even 400 .

How your specialists can know what YOUR body needs in regards rls or anything is beyond my ken .

But i have read ( I think from Dr. Buchfuhrer ) rls specialist that some people don't respond until they hit ferritin level 300 .. or even 400 .

The normal range is 30 .. 565 .

If your Drs. can know what YOUR body needs in regards rls ... i would sincerely like to know how they know .

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nightdancer

THIS is why there is a BIG study being done on ferritin. I have other issues concerning iron, so my doctors DO know what is safe for me, and so do I. :) In people with NO RLS "normal" is 12-15. They ARE saying they can go higher than 150, if it is conducive to co-existing condition. Iron OVERLOAD can kill you. So, what is "normal" for people with RLS is changing all the time, used to be up to 100, and now they are going for higher doses and longer treatments in studies, which is lasting 18 months. There is no "normal" for people with RLS. Yes, Dr. Buchfuhrer, who I am well acquainted with, says you can go higher, too, depending on each individual's needs. There is NO ONE thing ow way to treat RLS, and again, you did not answer me how long ago were your infusions, and how many did you have? they had to have been VERY recently. At 70, if you drop some points, eventually your RLS may show itself from lurking around, so I am assuming you are having frequent ferritin levels done. Usually it is every 3 months for the ferritin checks to see if your body is going to store it.

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Svengolly

The mayo clinic states : Ferritin For women, 20 to 200

As far as i know Iron overload is around 1000 .

This is my second go round with rls .. the last recovery lasted 3+ years .

I had six100ml infusions of Venifer over 6 weeks , but my rls as well as 30 years of regular insomnia vanished in about the second week :)))

My ferritin went from 7 to 70 after the first 5 infusions.

Yes this recovery was recent & yes i will monitor it often .

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LotteM

Ibidem all of the above.

Of your current cocktail of meds, the Targinact is most likely to help - even if and with augmentation. If you indeed have augmented, pregabalin will not really be of help until you have come off the ropinirole completely.

Sorry to hear that you are suffering so much. I almost hope that you have augmented, because that means your RLS is most likely going to be better after complete withdrawal from ropinirol.

Educate yourself and keep us posted. We’re here to help, advise and support.

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Ruccsack
Ruccsack
in reply to LotteM

Thank you for your kind comments. I did not realise that RLS affected so many people. I cannot remember how and when my RLS started. I am not very active because of spinal problems, (four herniated discs), both hips have avascular necrosis, osteoarthritis in both shoulders and knees. Perhaps my RLS has been brought on by my inactivity. I was fit in my younger days, I am an ex soldier and former policeman. Many thanks to all you kind people on HealthUnlocked for your info.

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nightdancer

I have lots of spinal problems, surgery coming up, and I really am not too active right now myself, it will be an SI joint fusion, so 6 months to recover, at least. :) But, I have to agree with the people who are saying you need to learn about augmentation. In 28 yrs of groups, augmentation is the ONE thing discussed every day, from dopamine meds. Good luck!

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Inactivity is unlikely to be the reason for your rls. A sudden drop in iron levels, injury trauma - particularly back injury, a sudddn fever, reaction or certain meds and genetic predisposition are all much more likely reasons.

I really hope you manage to get it under control. It is a miserable condition.

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Ruccsack

Thank you for your comments. I hope to take on board some of your comments and try to get a bit more active.

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Joolsg

Hi there,

Is there a particular reason your doctors gave you Targinact as well as Ropinirole? Targinact is licensed for refractory RLS when other drugs, like Ropinirole, have failed.

As you have been so excellently advised, you are on the maximum dose of Ropinirole and could be suffering Augmentation.

You will find a way through this- I think if you are augmenting, once you get off Ropinirole, you should start to feel a lot better.

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Ruccsack
Ruccsack
in reply to Joolsg

Targinact was given to me a long time before I started having RLS. I attended a pain clinic for my spinal problems and the doctor prescribed Targinact for pain that I was having. I cannot recall when I started having RLS to be honest. It seems to coincided with me cutting out red meat and other foods. I don't eat a lot of meals I much prefer to have either toast or a sandwich for a meal. I have eliminated caffeine totally and I do not drink alcohol. Thank you for your interest in my problem of RLS.

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involuntarydancer

Ironically, some people find that a cup of coffee in the middle of the night helps to calm the nerves. The theory is that it works on the adenosine system which is implicated in rls symptoms.

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Abookwriter2

A cup of coffee in the middle of night?! I might get up for that:) I have one half decaf in morning-I love coffee.

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involuntarydancer

If you look carefully enough you will always find the silver lining! Even though I wish I didn't have the need of it, I enjoy my nocturnal cup of coffee. For me, it really does work - not super reliably - it's not man enough for severe symptoms but if it is a case of minor symptoms creeping through the coffee often settles them down.

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rls_optimist

Hi, Ruccsack, I second all the good advice you've received here. And I want to emphasize the importance of getting your blood iron levels checked, specifically ferritin (that's the protein that stores iron and carries it in the blood). Get the actual ferritin level number after your blood test. Because levels that are "normal" for most people are nit high enough for RLS sufferers. For us, it needs to be at least 100, and for some, even up to 300 or more. If yours is below 100, consider oral iron supplements (say, 25 mg ferrous bisglyconate on an empty stomach, e.g. at least 2 hours after dinner). Do that for a few months then get retested. If still low, you may need IV iron infusion. I did that, and it really helped reduce my RLS symptoms.

More activity may very well help, but the iron is likely a major factor in your case. Good luck!

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Ruccsack

Activity is very restricted because of hip, spine and knee problems. Another medical condition I failed to mention is, I suffer from severebalance problems which can cause me to fall over should I bend down. Not being treated by my GP as yet.

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bauerannec
bauerannec
in reply to Ruccsack

Hi,

I'm 69yrs.and I also have rls and arthritis, you're not alone I also have bad balance problems.I started using a HURRY CANE,that's its name and with it's three prongs it's pretty stable, Recently I got a rollator ,it has four wheels and a seat if I need to sit down.

I just love mine I ordered mine from Amazon, it really helps me to get around better, you may want to look into a rollator ,it may help you to get out and walk, with a rollator you have plenty of support with a sturdy frame for support. I know what you mean when you said you have a bad balance and you feel like you're going to fall if you try to pick something up. I have a long devise that I use to pick things up ,because of feeling like I'm going to fall if I bend over to pick something up ,so I use use this long devise that picks things up,using this is better than feeling like I'm going to fall .

Take care and be careful because of your balance problem, Good Luck and God Bless!!

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Ruccsack
Ruccsack
in reply to bauerannec

Thank you for your comments.Looking into the hurrycane and hopefully make a purchase.

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Ruccsack
Ruccsack
in reply to bauerannec

Hi, I bought a hurrycane as you recommended with your kind comments bauerannec, and I feel very comfortable using it. I use it everytime I need to go indoors and outdoors. The really good thing about it. Its adjustable to suit my height 6'2" and can fold up. Thank you for your comments about the hurrycane.

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Eryl

I've managed to eliminate my rls by changing my diet. I haven't followed any specific diet, but it turns out that what I've done is go o a ketogenic diet, and cut out an artificial preservative. I've tried to cut out sugar as much as I can, the main concession being a little marmalade on toast at breakfast time, the occasional (one every two or three weeks)bottle of craft beer, and a daily banana. The artificial preservative I avoid is E202 (potassium sorbate), which has a reputation for causing nerve related problems. You'll find it in almost every margarine, and several dips and sauces.

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Abookwriter2
Abookwriter2
in reply to Eryl

Awesome to hear about your Keto diet which was devolved for epileptics as are the drugs we take. I’m just attaching my severe, two month-old RLS with Keto, no sugar, minerals and other fermented foods. I’m better (well, two days) already from severe RLS the previous two nights. Those nights made me look up ‘natural cures.’ It’s fiod, of course.

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Eryl
Eryl
in reply to Abookwriter2

I've now cut out wheat altogether and take a daily kelp suplement as the Wahls Protocol recommends and take a daily kelpand see some benefit, so I'm moving over to following the protocol much closer than a ketogenic diet. I tested myself a month ago, by eating a small packet of sweets, and felt no repurcusions, so I think that my nerves have gained some resilience, and I try to follow the protocol's advice on essential foods quite closely at home, so that I can be more relaxed about my diet when eating out.

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Svengolly

Yes .

For a large percentage of sufferers (including me) Iron is the cure .

Have you had your Ferritin levels checked ?

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Ruccsack
Ruccsack
in reply to Svengolly

Not checked by my GP as yet.

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BJamn

I would also like to add something to the conversation. This may be obvious to you and everybody else but I was ignorant of the hazards of weening off of dopamine agonists. The condition is called DAWS and you may want to research this before attempting to go off of your dopamine agonist. It hit me like a ton of bricks and I was only taking .5 mg. I cut it in half and had severe withdrawals....rls moving to other parts of my body, rls all day, profound, unexpected depression. Nasty stuff. I am now down to .125 mg and contemplating where to go from here. Good luck an d God Bless.

BJ

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Ruccsack
Ruccsack
in reply to BJamn

Thank you for your valuable info, very much appreciated indeed for all your input about RLS.

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SGRLS

Hi everyone, I would highly recommend wearing a knee cap to provide relief from RLS. I've been wearing it for 3 nights now and it's worked wonders for me. Hope this works for you as well!

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Windwalker

There is no known cure, only treatment and that varies from patient to patient.

The so called experts cannot tell you if the signal comes from the brain. itself, the brain stem or some place along the spinal cord. So if the cause is unknown and no research that I know of, is going on, we are to simply wait and suffer. The only drugs are OFF LABEL.

BIG PHARMA IS HAPPY TO KEEP IT THIS WAY. sales of the scrambling of OFF LABEL drugs are soaring and profits are high. It will remain an orphan disease until the president of a big pharma firm or his wife or son or daughter gets the disease. Suddenly it will be a priority.

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Hgaguk89
Hgaguk89
in reply to Windwalker

Is there some way we can promote research? There must be RLS charities with *some* clout

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lsd245
lsd245
in reply to Windwalker

you got that right 101 % !!!

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Zita13

Hello, anyone tried LDN (Low Dose Naltrexone) ?

What are you using for sleep?

Does exercise help?

My symptoms get worse with walking, after 15-20 min feels severe constriction around my thighs. Recently tried yoga which also made my legs worse to the point that I was in pain all day, it felt "I ran a marathon".

Thanks any input.

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LotteM
LotteM
in reply to Zita13

Hi Zita, are you sure you’ve RLS? One of the diagnostic criteria is that movement (walking, stretching) relieves the symptoms - however temporarily. Maybe you’ve got something different?

Re LDN - I did. After reading several posts on here of people that used it with good effects. Although initially I thought it helped with daytime tiredness, not eith RLS though, I stopped a while ago, as I still felt and feel tired during the day. Not as much as before, but that is owing to my improved sleep as a result of effective medication (oxycodon ER).

I don’t use anything specific for sleep as I don’t have the alerting side-effect of oxycodon.

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Windwalker
Windwalker
in reply to LotteM

LotteM are you in the USA? the doctors I have had won't give a prescription for Oxecodone and if they issue one it is a 10 day script.

I'd be very happy to take a time release codine which is the best RLS treatment and we all know it, except for Big Pharma,The AMA, 99% of Doctors, and anyone who never had RLS. The relief is an uphill battle that we will have an uphill climb to get some relief.

There was a time we could go to a drug store and ask for an opiate call Paragoric, (probably spelled wrong) but it was an Opiate which the old timers used for their RLS.

My modern politically correct doctor is afraid he'll loose his license to practice, and we suffer. Addiction is usually the recreational user, not those seeking relief from illness.

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Windwalker

The way to relief using methadone is to administer large doses under protected conditions, not outpatient. Keep up the high doses until the patient is clean from all the junk they took trying to get relief. After they are clean except for methadone, start reducing the dose until the patient is sober and not dependent on the off label junk. Reduce the dose until only RLS shows its ugly head, then increase the dose 1mg a day until the patient can sleep without uncontrolled movement, about 5mg a day at 6 in the evening. It is low cost and the case I am familiar with 14 years without an increase in dosage.(no Augmentation) YOU WILL NOT FIND MORE THAN ONE NEUROLOGIST IN A THOUSAND WITH THE BALLS TO DO THIS FOR US.

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LotteM
LotteM
in reply to Windwalker

Hi windwalker, no, I am in the EU, in The Netherlands. Two suggestions, one is this recent Mayo Clinic paper on the use of opioids for RLS: mayoclinicproceedings.org/a... It may help to give your doctor scientific ground to prescribe an opioid or even codeine longer time. The other is to try and find a doctor through the US RLS organisation rls.org. Also nightwalker knows about a lot of knowledgeable doctors in the US, maybe write her a PM to help you find one.

I hope this is useful and helpful information. It’s a nasty disease, isn’t it?

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Windwalker
Windwalker
in reply to LotteM

LotteM

I am a patient at Mayo Clinic Phoenix AZ.My Urologist says he has never heard of any study done by Mayo. I clicked on the link you gave me and it came up saying ,''no such page exists'' I am afraid it is a cruel hoax. Yes it is a nasty disease!

Windwalker

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Windwalker
Windwalker
in reply to LotteM

I Meat Neurologist not urologist. It is early AM here and I didn't sleep much and mistakes are common under those conditions.

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LotteM
LotteM
in reply to Windwalker

I’ll give you te ncbi link. Below the abstract there is a link to the full text of the paper. ncbi.nlm.nih.gov/m/pubmed/2...

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LotteM
LotteM
in reply to LotteM

The first author of the opioids for RLS paper, Michael Silber is at Mayo Clinic, Rochester. Maybe your neurologist can read the paper and if needed contact Silber him/herself if he/she needs further clarification etc?

Gosh, how we need to be our own doctors....

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