When I talk to people around me without RLS about it, I always mention the massive divide between the two camps which based on the number of posters, not number of posts, seems to be around 50/50. This post is inspired by comments about of all things, compression socks. I have used socks, but I prefer knee wraps as a tourniquet, or for tight compression. They are fantastic to stop symptoms and it is impossible to ‘lose a limb’, but that is not the subject of this.
The first camp are all about doctors, neurologists, sleep studies, quoting papers about RLS as a neurological condition, dopamine, glutamate and brain iron (BID), rock star doctors and researchers, sites that promote this view, and lots of pharmaceuticals as the only real solution. Also they dominate on forums as moderators for endless posts on how great the drugs are, combined with augmentation, bad side effects and never seeming to get any sleep.
The other camp reads the papers on RLS and goes ‘say what?’ You get dopamine down regulation and elevated glutamate from sleep deprivation, low dopamine from SSRIs, BID from oxalates and in autism, yet no RLS en masse in these groups. There is also recognition of the numerous papers on irregularities in the regions of symptoms. This group experiments, and often has success with diet, supplements and physical treatments. They feel normal when they get enough sleep, as if there is no underlying neurological issues. Drugs are an absolute last resort or for never. Doctors are well, for other things.
There is no point to start a debate on the validity of the different views, as these are entrenched, but it would be interesting to see which camp RLS sufferers are in and why.
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I am of the camp that that will try anything (even bar of soap that worked for one night!)
I relentlessly research everything about rls and its medications ( even though my limited intelligence does not allow me to progress very far)
I listen to all reasonable proposals and make supportive comments where appropriate.
I sometimes try to lighten the conversations with my quirky Irish take, but am often misinterpreted and suffer accordingly.
I try to keep my patience, when the same queries arise, again and again and again. (Dr Buchfuhrer is my guiding star in this respect) I have to zip my lip constantly.
I often feel like folding up my tent and walking off into the sandstorm, but then feel that if I am helping just one sufferer in a year, then my contribution may be worthwhile.
I'm not sure to which camp you would assign me , but does it really matter.
The real issue is the number of doctors who don't even have a tent.
I was just recently cleaning out my bedside table draws and found a bar of soap in a sock. I knew it wouldn't work, but I tired it anyway.....and then forgot about it and left it in the back of that draw for a couple years!
Guess that puts me in the I"ll try anything category! lol
Oh dear - mind you don't get yourself arrested, we would miss you!
Thanks, an interesting read.
I can't say I fall readily in either camp.
I hven't gathered any statistics on members of this forum in terms of which camp they seem ti be in nor how severe or debilitating their RLS is.
I suspect that members of this site aren't particularly representative of people, generally, who have RLS. Perhaps only those most affected by it bother to join and post.
My own view, based on a superficial observation is there may be several reasons for the two apparent camps. Two of which, I think, stand out.
One is the severity of the RLS, the other is the myth that "RLS" is a singular "disease" and has a singular cause.
I don't think anybody wants to take potent drugs along with their side effects and risks if something that causes less iatrogenic issues is effective. That's an individual choice to make i.e. do the benefits of taking a specific action, (exercise, drug, device, vitamin, bar of soap etc), outweigh the negative consequences.
I would imagine, as is reasonable, that if symptoms are relatively mild and or have minimal effect on a person's quality of life then the risks of drugs may appear to outweigh the benefits.
It seems reasonable to also assume, that if non-pharmaceutical mesaures have failed and RLS is severe and debilitating then the benefits of the drugs might appear to outweigh the risks.
Add in the factor, that if risks are known, ways of avoiding them can be considered. Many of the experiences that "drug takers" experience are because they haven't been forewarned.
Also note, saying someone's RLS is "mild" is not intended to be an insult as some posters seem to think. There is a validated scale for measuring severity more objectively and even mild symptoms should not be dismissed.
There are many causes of the RLS "syndrome".
There have been studies which have cast some light on the causes of Idiopathic (primary) RLS. Not all, but some of these appear to be valid, reliable and hence credible evidence of the involvement of genetics and various biochemical elements. To dismiss them entirely is to dismiss science and hence technology as these are based on the same underlying epistemologies.
Knowing a possible factor in idiopathic RLS is a lack of dopamine D2 receptors does logically suggest a dopamine agonist (DA) can help. It does. To repeat, if anyone considers the benefits of a DA to outweigh the risks, that's their decision and nobody should be denied the choice.
The causes of secondary RLS are perhaps more varied and it may be that remedying the underlying issue is sufficient e.g. correcting vitamin D or iron deficiency. Additionally, specific remedies only work for specific causes. E.g. if RLS has a vascular element, then compression stockings may help, if not, they probably won't.
Despite the issues that pharmaceuticals bring with them, they are tested, regulated and controlled whereas as the diets, supplements, devices etc are not. Despite the number of responsible suppliers, you can't ignore the number of unscrupulous manufactureres dealers and retailers who promote an overwhelming variety of products for which there is no real evidence, many of which are simply ineffective, possibly scams or even dangerous.
I would say, prove to me that some particular RLS remedy is as effective as the current remedy I use and that it is less risky and with less side effects then I'll use it and recommend it.
Adverts claiming benefits for a product or members on this forum posting that something works for them or that something is a miracle is NOT proof. The severity of their RLS may vary, the cause of their RLS may vary. It may be a placebo effect.
I accept it's not DISPROOF either, but it's definitely not sufficient for me to give up my current remedies to try it on the off chance. When my RLS is uncontrolled, it IS severe.
Part of the problem of there being two camps. IF this is so, is perhaps that there are some people who strongly promote "alternative" therapies, along with the idea that you should ONLY use these and that somehow you're moraly weak or simply wrong to take pharmaceuticals.
I welcome the concept of "complementary therapy" and see no great difficulty with it. Why not be in both camps?
There is a limit : I read recently of a lady who decided to take turmeric instead of chemotherapy for her breast cancer.
Most overviews of the treatment of RLS I've read do NOT recommend the immediate use of pharmaceuticals. They do suggest some commonly accepted non-pharmaceutical measures. Pharmaceuticals are only recommnded for persistent severe RLS, the risks are identified.
Perhaps those who are of the drugs "only" camp (if they exist) should be open to the possibility that other things may help. However, those of the other things camp, should be open to the possibility that they might need a pharmaceutical. Or both.
Entrenchment in extremeties is maybe the real problem. not the the existence of two supposedly opposing camps
As regards the compression stockings I can only say that in the UK some years ago, medical compression stockings were banned! I doubt if anybody's leg dropped off, that may be a flippant exaggeration, however the decision to ban them wasn't without good cause.
They were reinstated with strict guidellnes about correct fitting. If anybody tries them, why not? Then it's a simple enough matter tio make the measurements and ensure they're the right size and instructions are included on how to put them on safely.
I can only assume that stockings advertised as one size fits all are designed to be safe for all sizes and hence. for some people, they might be ineffective.
I understand where majority views on RLS come from, but I disagree with them.
My perspective is based on a personal interest in general science, and as having jobs in which most of my time is free, having done insane amounts of time reading papers on physical fitness, life extension, diet, and for practical application on a close friend, impact of diet on cancer treatment. I’m also into optimal fitness training, and all the physiology that goes along with that.
My RLS was only an inconvenience for 8 years, and I didn’t even know that’s what it was. It didn’t impact my overall sleep, with symptoms easy to treat with a stretch and I felt normal generally. Overnight it went catastrophic due to reasons requiring a post of its own, and my physical and cognitive decline commenced.
First thing was to manage symptoms from a physical perspective, second was to experience and explore what was happening. This means not moving and working out what was happening. I’m an advanced meditator, but enduring symptoms was the most difficult thing I have done. But experimentation indicated what is happening clearly.
I read numerous papers that were highly flawed. Science is done by humans, so there are always problems of bias, tunnel vision, commercial agendas, egos and just plain idiot authors. Then I saw a cult that followed these papers consisting of sufferers, researchers, doctors and mainstream media. I seek out opposing information and perspectives to prove myself wrong regularly; it is important on any view in life. So it became clear the herd mentality was why RLS is, and will always be as it is now, a total mess with no progress. I hope I’m wrong.
The issue and divide isn’t as simple as drugs or not, but born from the perspectives on cause, mechanism and the unhelpful view that there are different RLS types, causes and breeds; this degree of freedom to speculate with confidence doesn’t exist in any other condition with a clear mechanism. For the average RLS victim this is not important, as survival is the priority; although it still shapes a bias on the condition. The issue is the direction of research and treatment, which is currently unsatisfactory in all aspects. If you want to see some truly bad science on RLS, check out the paper on RLS and ADHD, then the follow up that shows it correlated with sleep deprivation not the condition. This is a bit of a clue on most RLS research.
Of course this is my perspective, and I don’t discount any alternative views as being valid. But there is a small resistance to the mainstream agenda in science, as well as the mostly silent RLS sufferers that succeed outside this dominant culture. The point is that ‘unknown’ is just that, and that anyone’s speculation caries equal weight at this time; even if it is plainly wrong.
I’m currently dumping oxalates and my RLS symptoms are bit of a ‘trip through time’ and range from getting better to pure hell, so the full range of treatments are being used. You can’t just throw a treatment at anything so it is a bit of a full time job at night. I will be brief, but you can ask for more detail or I will create a new post.
There are treatments during the day, before bed and symptoms stoppers. Symptom stoppers most of the time means sleep for the rest of the night when good. I will just list the symptom stoppers:
Nerve activation point – pressure on the painful part along the bone feeding the muscle. Pure magic when it works. Luck and skill is high.
Compress nerves behind knee – I use my thumb or hang legs over bed frame, magic again when works. Skill medium, luck medium.
Sciatic nerve compression at top of leg with wrap – the right pressure blocks the messaging, on before sleep for a full night symptom free. High luck value.
Compression wraps – target an area, or above to numb the area with combination of blood flow restriction and nerve pressure. Medium skill, low luck needed.
TENS/EMS – if symptoms recurring and treatment working, pads placed before sleep under compression socks to keep them in place for a quick hit. Sometimes hit an area before sleep. High skill, medium luck.
Flexing – haven’t used this for a while, it was for higher on the calf. Exhausting for about 5 minutes, full night’s sleep ensued, I can't remember why I stopped.
Frozen water in a container – A pain to manage the ice block, but a good last resort behind knee, for sciatic, local and sometimes for all over the calf. Medium luck.
Sciatic targeted by bending leg out to side or face down with both knees out – I got almost 2 months of glorious sleep from this by easily stopping symptoms and with minimal effort until symptoms worsened due to daily exercise.
Good old stretching – sometimes I forget the basics and a stretch will do it. I have a small step for a full calf stretch, a knees to chest lower calf stretch and roll out ankle straight leg stretch. Why people walk around for hours confuses me, as a short walk to the bathroom can sort out the feet.
There is more such as elevated legs, plantar fasciitis socks, massage balls and in frustration assaulting the calves with the ball; which often works.
Edit: I missed that you may need to place your hands on the area of symptoms and not move to feel what happens when they occur. This should help to make them more localized.
Can we please stay off politics. I don't think this is the place for it.
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Apologies.
It's good to have a bit of humorous banter now and again, but neither religion or politics are suitable themes for this, I agree.
Spot on Manerva. Not suitable themes for this forum.
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I can't see why they aren't OK for a joke. IF, and I'm only saying IF, a joke made about a politician/political cause you like/dislike stops you from getting help then it is not joking that's the issue!
With regards this forum being a place for political talk - is health not an inherently political topic?
Is the fact that we cannot avail of cannabis not a political topic?
Are surveys forwarded to the RLS-UK AGM not political?
I for one struggle with RLS, (and M.E. among other conditions), and I NEED A LAUGH AND A SMILE - I don't care if it is at me or my family or if you are laughing with me as long as there is laughter and a little more light. This place and the craic I have here goes a long way some days to making me want to go on.
I have joked about myself most often with the other topics coming as distant runners up. I have had a number of people make jokes about me (keep them coming I deserve them) and I enjoy each and every one.
The world has become a place where humour is being eroded in the name of respect and 'safe spaces' - where is MY safe space? Where can I crack a joke and have a smile without fear of being labelled [insert current term of censorship here].
When you have advised that some one try gentle iron, in the evening, on an empty stomach, with a little orange juice to help absorption, low iron = poor dopamine transportation for the 12,25252,7446,656th time that week you might need to poke a little fun to keep your chin up and keep posting.
Sorry for the hijack but Dear {insert deity, cause, non-denominational, non-spiritual, corporeal scientist or academic of your choice} can we not, as adults, allow each other to have their own beliefs and accepting as mature beings that others who hold contrary beliefs are not a direct threat to us?
Please?
PS Knock Knock
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Who's there?
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I'd say a ban if I finish this 😛😁
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OK, I confess, I'm like the character in the "Fast Show", if you ever watched it/recall it...Every time somebody said something he'd agree with them even if it completely contradicted what he'd agreed with a few seconds before.
I'm not sure it matters which camp you fall into, or if you fall into the middle ground between both. Posters can be such an enormous help on this site, always ready to prop someone up when they are rock bottom, or take the time to offer advice or their experiences in case they are of help. They show kindness and patience, and information sharing. You rock.
What is not so positive, in my opinion, is that sometimes posts can be very emphatic and bullish, negating or discounting the opinions and even experiences of others, which I imagine would put a lot of people off posting more alternative experiences, or just personal ones, which could be of potential help to others. What is reasonable, sensible, acceptable etc. to one person, will not be to another - that's the human condition. But it's how we go about expressing that which is important because we never know the effect a public rebuke could have on someone.
Call me 'fluffy', 'idealistic', 'oversensitive' - I'll take that!
sorry. You are correct. Thank you for pointing that out.
I believe it's acceptable to have some degree of healthy scepticism and sometimes that might take you into areas that might be contrary to more commonly accepted ideas.
However, I would ask, given the current state of the reesarch (good or bad), pragmatically, what are you suggesting?
If, as you seem to imply, RLS isn't due to a dopamine, glutamate, adenosine. iron etc dysfunction and all the medicines based on these theories aren't necessary, what would you put in their place?
What I find interesting is the success of the low oxalate diet as well as a paper identifying mast cell activation syndrome (MCAS) in RLS. Although unlikely to cover everyone, in these two there is a clear mechanism of muscle/nerve issues at the point of symptoms. This gives a completely new perspective, although viewed by many for a long time without evidence, of a bottom up instead of top down view of RLS.
It now becomes a motor sensory condition, with symptoms initiated by the natural reduction of dopamine at night time or at rest, due to ‘some’ irritation/inflammation of muscles and/or nerves. Or the short version is that RLS is a ‘dopamine dependent muscle inflammation with psychiatric symptoms’. But of course different to usual inflammation as steroidal anti-inflammatory drugs don’t work; most likely the type seen in kidneys from oxalates.
The periodic nature of the symptoms are even covered by brain maintenance pulses that check out muscle 'status' with the response being lets say, unexpected during low dopamine initiated inflammation.
Any theory such as this has to incorporate everyone’s experiences and why there are an insane number of treatments that work for RLS. Apart from iron, alpha-2-delta drugs and augmentation, it sort of works better than expected.
This then makes the complex process that creates unnatural symptoms most likely a ‘potential’ that everybody has. I spoke to a retired psychiatrist in depth about this theory and detailed my experience of RLS. It turned out that he did a paper as a student that included phantom limb pain mechanism and treatment. It was the missing piece for me as the mechanism for the symptoms and treatment is close to identical.
As the forum rules rightly state that we shouldn't have a go at each other I will only say I find some of your remarks patronising.
I would imagine most people that join this forum are having, possibly severe problems with their RLS and are looking for help with practical solutions. and also looking for emotional support. For many, the only help they've sought previously has been medical help which has failed and/or hasn't been supportive.
Others join the site to offer what they feel is a solution, or to be supportiver. Some of the solutions offered are helpful. some not and some potentially dangerous.
Some are appreciative and grateful for what they get from the site. Some aren't and there are misunderstandings.
Ultimately responses which don't comment on possible practical solutions or aren't supportive may be interesting or even entertaining, but they're not helpful.
This discussion has moved to the abstract, for ideas and maybe a better big picture view of RLS.
We still need doctors, pharmaceuticals and of course a community that does its best with what it has. Advice on anything is always going to have hazards with pharmaceuticals and alternatives sharing both practical and madness extremes. We differ on our views on how that should be structured, I think you may be too protectionist with a bias towards your own experiences and I'm the result of being detached from humanity and view of life being 'lets just run the experiment and see what happens'. Should we offer advice on RLS? Why not, we can't do much worse than the average doctor.
However questioning long held views can only be good, but of course with no real overall practical application.
We will review this in 10 years and see if the situation has improved.
I'm sorry you feel detached from humanity. It might explain why you make remarks that I find provocatively patronising. It is possible to debate issues without being insulting.
I'm a it confused because I've heard of Mast Cell activation, and I understand about too much histamine in the body creating inflammation and nerve issues. And I understand that reactions to food and drink that flare RLS symptoms might be due to histamine for some. So where does psychiatry fit into this?
Hello Sampsie, there is some theory that RLS is related to an inflammatory response, even that it is an autoimmune disease.
It's usually ANTIhistamines however that make RLS worse irrespective of the inflammation theory.
The reference to a psychiatrist, I gather isn't a suggestion that RLS is psychosomatic or all in the mind. In which case, it's probably not worth thinking about.
Yes the three actions I've read about for this are:
- anti-histamines - no good for most RLS sufferers
- DAO supplements to increase DAO which naturally limits histamine
- improving gut health through pre and probiotics - I'm a huge fan of the research on positive outcomes of this and very interested in the gut-brain axis. This is my current attempt to get well
I've had years of being subjected to accusations of 'all in the mind' and 'think positive' and it's damaging.
Apparently I’m offending people, so here is a trigger warning or a reminder that we are talking about ideas and if you want to interpret to it applying to you or not, it is up to you. If you disagree that is fine. If you want to join in with other ideas, that is even better. Also, apologies for a big wall of text to follow.
As for Mast Cell Activation here is the paper, interesting but open to interpretation at this stage.
I think it is the term ‘psychiatric symptoms’ that is confusing you. It is a clumsy term that I have used only because there isn’t a better one. If there is a better suggestion I’m happy to use it. This is to describe the worse of the RLS symptoms as tactile hallucinations, meaning they are not real muscle or nerve produced experiences.
The word psychiatric, which has been replaced with mental health mostly these days, covers ‘the diagnosis, prevention, and treatment of mental disorders’, but also includes anything out of the normal experiences. For example, in meditation a small percentage will experience very strange and sometimes disturbing experiences while meditating. These are symptoms of mental health issues being triggered by the experience, without an underlying mental health condition, and only during meditation. Your brain has the potential for a range of hallucinations depending on the situation; recreational drug use is a good example. I personally have had visual hallucinations on drugs, and experienced auditory hallucinations from on old phone notification sound at times.
In phantom limb pain (PLP) it can only be a tactile hallucination, as there is no leg. Migraines and fibromyalgia have also been suggested as tactile hallucinations due to the ratio of incredible pain, yet with no measurable physiological trauma. As you can imagine, people go kind of nuts at this suggestion as they scream highly offended ‘you are saying it isn’t real, it is all in my head’.
Unfortunately the point is lost as some people have problems accepting that your brain could be so cruel as to create something like this, as well as being very literal in that ‘if it seems real, it must be real’. Also this is interpreted as saying they are mad, insane or crazy. But it definitely isn’t, it is being very normal generally but for the mechanism of the condition at that time.
This is very important in RLS. There is a big difference in understanding the physiological if certain sensations are created locally as purely physical, in the spine as in PLP, or entirely in the brain such as with most hallucinations.
Most known health conditions are like an hour glass, with wide causes at the top, wide outcomes at the bottom, but very tight in the middle where there is a key mechanism or process. RLS is just a mile wide tube at the moment. The tight part could be a shared process with PLP, and even migraines and fibromyalgia, in how symptoms are created.
I fall in to the "use drugs as a last resort". Why. Personal experience. DA drugs were a disaster for me, my life and my wonderful family. My RLS went from my legs to a full body disaster in about 18 months.
I reported about 20 symptoms of anemia. I asked the neurologist if we were missing anything, he looked me in the eye and said Ropinerole was my only hope.
Then after 3 days of not sleeping and searching Google Scholar, I found a paper describing how a brain iron deficiency can cause RLS. Looking at my blood test in hind sight is depressing. How could the doctors not have known?
I requested and got an iron infusion. Even though it was Iron Sucrose, the infusion hit me so hard. I took about 4 months to recover, it was an up and down roller coaster. But oh yes, it helped more than ANY drug and I have taken a lot.
I now follow the Clinical Consensus for the Management of Restless legs. John Hopkins Medicine Restless leg foundation. Mayo Clinc Restless leg foundation and Dr. Buckfurer.
I started supplementing with iron, and I can honestly say, I am doing MUCH better. I even sleep through the night.
I know iron doesn't help everyone, but I do think a morning fasted full iron panel should be the absolute first step for ANYONE suffering from RLS. It should without doubt be standard procedure for RLS patients.
I have stop reading most of facebook groups and follow health unlocked and a few people I respect.
Thank you for your post and all the interesting comments.
BTW, in the very beginning, when my legs started twitching, I used compression knee wraps. They worked! I thought I had the cure.... for a week. :-{
Great to hear that your eclectic approach has enabled you to find a solution and that you have found sources of information you feel you can trust.
It's a shame that those who you'd expect to be knowledgeable about a condition that can have a significant impact on your life, i.e. some doctors, aren't particularly knowledgeable.
As an engineer, I'm firmly in the camp of 'analyse the cause' not 'fix the symptoms'. I've found that rigorous control of diet with a few vitamins to help repair the damage done over the years by eating a bad diet works for me. No medication at all. Not only has it eliminated RLS, but I feel generally ten years fitter and younger.
Absolutely, fix the cause. That to me seems the most logical. Yet most Doctors are very quick to recommend drugs. I talked to my Doctor about this and asked why. I can't do justice to his response, but it was something along the lines of, people want an easy fix. Eating right, working out and losing weight takes a lot of work and effort.
When you suffer with RLS, there is no description whatsoever that will enlighten those without it, as to what you are going through. There is nothing that I wouldn’t try to put an end to the hell.
I am grateful for the medications, ghastly side effects & augmentation included, because they bring relief, even if it’s only for a while or temporary. Every minute without RLS is a bonus, is good to be alive & enables one to face the hell again.
For those who make us smile & laugh at ourselves, with your tongue in cheek comments, for those who spend hours researching, for those who take time out to deal with newbies or help someone struggling through the night... for those who pray for us...YOU are the heroes, the ones who make this RLS journey bearable.
Yes we are bearing the unbearable, let us keep on, keeping on to help one another whenever & wherever we can, using our different skills, knowledge & personalities. Thank you to those who have been there for me in all these different ways. You are so appreciated 🌷
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