Things, regimens,etc that are probably RLS worthless.

[fritz34]

THINGS THAT DO NOT WORK FOR RLS

All of us with RLS/PLMD have slightly different symptoms. We have tried various 'remedies' to try to relieve our RLS symptoms. We have read articles, some interesting, some ridiculous (bar of soap) that make amazing promises. And there is an entire array of things to try to obtain some peace for our bodies. Probably the best way to manage our disease is 1. educate ourselves about the disease itself and 2. look into possible remedies.

We know that RLS is caused by out-of-whack chemicals in the brain. This has been proven by many studies. It is not caused by 'heredity' - that's a characteristic, not a cause. We know that there is no cure - yet. And so people become desperate - that is understandable. And people who are desperate will try nearly anything, no matter how unscientific, unconventional or non-medical it may be.

The following is a list of non-traditional practices which have been shown to NOT WORK on RLS, not work meaning significant, long term symptomatic relief. There are no peer-reviewed, clinical or randomized trials or scientifically published papers with regard to RLS for:

Accupuncture

Accupressure

Aromatherapy

Ayurveda

Biofeedback

Neurofeedback

Bodywork

Chiropractic

Diet Therapy

Environmental Medicine

Flower Remedy/Essential Oil Therapy

Folk Medicine

Herbal Therapy

Homeopathy

Hydrotherapy

Hypnotherapy

Imagery

Juice Therapy

Light Therapy

Massage

Naturotherapy

Vein stripping

Osteopathy

OTC (over the counter) products

Sound Therapy

Traditional Chinese Medicine

Vitamin & Mineral Therapy (Mg excepted)

Yoga

Quite the list. And it probably incomplete. Again, none have been shown to be of any value at all in treating RLS symptoms long-term. Of course, the problem is that none of the 'modern' Rx drugs have been shown to work long term either. The best solution for now, for many, is a 'cocktail' of medications - two or even three different meds, adjusted to give optimum results. If possible, the fewer the meds you are on, the better. But it appears as if items in the above list are probably a waste of time and money. However, it is your time and your money. If you find something that you sincerely believe helps you, go for it (hypnotherapy for pain management comes to mind). This posting is information, not judgment. For the rest of us RLS sufferers, the list is probably things to steer of. As always, peace, and I hope this helps.

[Elisse3]

Can you explain what you mean by it’s not heredity that’s characteristic not a cause.

[fritz34 in reply to Elisse3]

Characteristic is an association. The cause of RLS is well known. Heredity does not *cause* anything.

[SueJohnson in reply to fritz34]

Oh - what is the cause? Low brain iron is one cause and there are genes that make one likely to develop RLS. And then there are all the unknown causes.

[fritz34 in reply to SueJohnson]

Science has pretty much proven the cause of RLS - low dopamine in the Substantia nigra in the brain. Iron is essential in the manufacture of a dopamine precursor.

So. Low iron = low dopamine precursor = low dopamine = RLS.

[LotteM in reply to fritz34]

Sorry Fritz, here you are wrong. “Low dopamine” is a misconception. We have plenty of dopamine, but it doesn’t get transmitted across the synaps, that is, from one (brain) nerve cell ending to the next nerve cell. “Lousy dopamine receptors” to transport the dopamine (across the synaps) is a better description.

[SueJohnson in reply to SueJohnson]

From Johns Hopkins: "The cause of RLS is still unknown. Some cases are believed to be inherited. Some cases have been linked with nerve damage in the legs from diabetes, kidney problems, iron deficiency, certain medicines, pregnancy, sleep disorders, and alcoholism." hopkinsmedicine.org/health/...

From the Mayo Clinic: "Often, there's no known cause for restless legs syndrome. Researchers suspect the condition may be caused by an imbalance of the brain chemical dopamine. Dopamine sends messages to control muscle movement." mayoclinic.org/diseases-con...

From WebMD: "The specific causes of restless legs syndrome (RLS) are not known. RLS may be related to abnormalities in brain chemicals (neurotransmitters) that help regulate muscle movements, or to abnormalities in the part of the central nervous system that controls automatic movements. RLS can sometimes be caused by an underlying medical condition (secondary RLS); however, most of the time the cause is not clear." webmd.com/brain/restless-le...

You are confusing RLS with Parkinson's. "Studies have shown that symptoms of Parkinson's develop in patients with an 80 percent or greater loss of dopamine-producing cells in the substantia nigra. " aans.org/en/Patients/Neuros...

[Elisse3 in reply to fritz34]

I have inherited RLS inherited from my father as does my brother it’s genetic passed down from a parent. I could have read it wrong but it sounds as if you think inherited RLS is not a thing please tell me that a not what you think. Primary RLS , apparently more suffer with it than Secondary RLS which is caused by a underlying condition

[Joolsg]

Thanks. Having tried most of the things on your list, I concur.However, there are some meds that do work long term for RLS patients, after they have exhausted the above, and failed iron infusions.

Hopefully, with more education for medical professionals, more RLS patients will be treated effectively.

[Madlegs1]

Not sure what you mean by "diet therapy" but diet plays a huge part in the treatment and control of RLS.

It is quite clear that the management of the microbiome is hugely important.

I don't know of any scientific support for this, but there is a large volume of anecdotal support and experience for this.

Just look at people's experience with food and drink triggers.

Avoiding inflammation also seems to be a major factor in RLS

[fritz34]

The association of the above is sketchy at best, plus a lot of anecdotal evidence is the result of Confirmation or Recency Bias.

[SueJohnson]

Many things on the lists do help temporarily or at least helps their symptoms while doing them and lots of people will be happy with that if nothing else works. You mention Ayurveda, Looking it up it includes yoga, herbal medicine, massage therapy and dietary changes Certainly yoga and massage therapy helps while doing it.

Some herbal medicine and some OTC products can relieve some or all of the symptoms for some. Also red light therapy helps some. Even Vein stripping for a very few eliminates their symptoms.

And changing your diet can completely eliminate one's symptoms for some.

You mention vitamins. Especially if deficient they can help. And iron, which is a mineral, helps 60% of people with RLS and in some cases completely eliminates their RLS.

Heredity may not be a cause but there are genes which predispose one to RLS.

[Hidden]

I understand that you're advising people to be sceptical of certain practices/products - which is a good thing - but at the same time, it's important to avoid posting misinformation.

There is both research and anecdotal evidence contradicting what you say.

It's not the case that all the therapies on your list have been shown "TO NOT work".

Nor is it the case that there are not randomised control trials for some of the therapies you list. A quick search of Google Scholar will reveal this.

Diet therapy (if you mean modifying one's diet in order to bring about a reduction in symptoms) can certainly help in some cases.

Regular practice of yoga can increase GABA levels in the brain which can result in a reduction in limb movements.

And there are studies and anecdotal reports of improvements using light (infrared) therapy.

I could go on, but if you're posting things as "fact", i'd say it's your job to do the research.

[Goldy700]

A bit simplistic - diet definitely helps especially none inflammatory and avoiding sugar, alcohol, staying well dehydrated etc although not a cure. I find that I can get temporary relief, enough to get to sleep by doing yoga - often in the middle of the night. The stretching definitely helps to calm my legs and back.

[Dotmowatee]

My trigger is lack of sleep and ice cream, lack of one and too much of the other and I have immediate rls, avoidance is key, and an OTC remedy which works well. Everyone is different.

[nocturne]

I think this forum has shown that some things help some people some of the time. The maddening thing about RLS is that there's no single magic cure that works for all of us. So, it's left up to us to try things and experiment.

[Simkin]

Acupuncture certainly did NOT work for me.

[Chiby-azul]

Sorry but to me acupuncture, acupressure works very good, I do certain exercises that help me too, I drink a little bit of pickle juice and fennel capsules all those things help me a lot but really good the specific meridians points for that

[Tryffan1]

Ty for your info. Having weaned myself off ropinerole, I am now taking a low dose of gabapentin (400mg). I also take iron every other night. I will not increase the gabapentin until I am sure the iron isn't making a difference. I can cope with this for now, as sleep is improved and PLM has gone. However, what I am sure of is that diet definitely makes a difference. I know tonight will be difficult as I am going out for a meal with friends. I shall just take codeine and hope for the best. Normally I don't eat after 6pm but you have to enjoy yourself now and again!

[MusoBass01]

A very interesting post and a much-needed dose of realism as regards to the treatment of RLS. In my opinion, too, there is no magic cure (although I've yet to try the bar of soap). I think one needs to understand what is going on and how to counter it. Before I consulted my GP some six years ago I bought and read Restless Legs Syndrome by Robert H Yoakum. I found it very useful indeed.

Colour Photo

[PoorRichard]

In my experience, and many others on this forum, the combination of diet, sleep habits, and exercise (in various forms) plays an enormous role in RLS symptoms. High/refined carbohydrates late in the day and caffeine are notable triggers. Your list of factors doesn't hold up to the science of living with RLS for most of us. Your omission of iron supplementation is especially odd.

[SwimLyn]

thanks Fritz for your comprehensive (& maybe controversial) list of waste of timers for RLS most of which I agree with having tried many on there.

I would like to suggest though that although shouldn't be used as cures some of them do give RELIEF probably as a distraction from this outrageous disease & I for one have a leg massage & aromatheraphy when I feel particularly depressed over it.

As long as people are aware that most of them are only temporary & keep on keeping on !!

[Wanted-sleep]

CalMag has given me ‘considerable relief’ from RLS for nearly 2 1/2 months so far.