Having been on this forum a short while, I have observed that the majority of ways people use to manage their RLS are physical remedies.
Well, this is quite right. RLS is in the brain not in the mind, it's a physiological condition.
This doesn't mean, I believe, that psychological aspects should be excluded.
I have experienced some quite indignant reactions to this. People say, it's not all in my mind or take it as implying that they are a "weak" person. I'm not clear why some people take it as a criticism.
Some of the comments I have read indicate emotional and cognitive reactions to RLS. People write of feeling suicidal, at the end of their tether, self harming, apparently willing to use extreme measures or risky medications. Is this not this a psychological element?
Introducing some key health psychology concepts.
Resilience.
Self efficacy
Locus of control
Coping strategies
Resilience is our capacity to cope with the ups and downs of our health. Would you believe you can find courses in "Resilience training". That is, you can improve your resilience.
Self efficacy is our belief in how effective our actions are in managing our health. If we don't belief we can act effectively then we probably won't try. It can be developed.
Locus of control is about our perception of how much control we have over what happens to us. Is control located externally, i.e. we have no control and it's a matter of chance, circumstance or up to others. Or, is it internal i.e. WE can be in control. Realistically we can't control everything, but we can control some things.
Coping strategies tend to fall into either being problem focussed or emotion focussed. Problem focussed coping is where you identify and try to deal with a problem. Emotion focussed is where you do things to make yourself not feel so bad. Classic Freudian defence mechanisms and "maladaptive" strategies. In the longer term, it's probably more beneficial to try to solve the problem. A problem solving approach can be learned.
Like any health condition that has a significant impact on our life and well being, cancer, heart problems, trauma these psychological concepts may be of considerable benefit in helping us deal with the consequences of RLS.
No, RLS is not all the mind, but there are means of adapting to it, that are.
So if I ever suggest some psychological remedy, please don't think I'm being dismissive of the physical nature of RLS or demeaning you in some way. Both physical and psychological remedies can work together to provide a more holistic approach to improving our well being.
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ALL ILLNESS AND CONDITIONS HAVE A PSYCHOSOMATIC COMPONENT.
I think that is what you are trying to say - our moods and environment like stress effect every single condition known to man or woman.
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Hi Raffs, not quite what I was trying to say. A lot of conditons that used to be called "psychsomatic" have now been found to be autoimmune disorders.
For genuine psychosomatic disorders, psychological remedies will eradicate the symptoms. If a condition has a partial psychsomatic element, then psychological remedies will partially relieve the symptoms. RLS may have a psychological element e.g. there is a link between the Hypothalamic- Adrenal Axis (stress system") and RLS. However that';s not what I was referring to.
I was referring to how we deal with the experience of having RLS, not treating it.
As an example if you saw the much talked of The New Cure programme last Wednesday, there waa a guy who said he'd broken two toes and it showed him thrashing about in his bed. If he'd taken a problem solving approach to this perhaps he would be more likely to see that perhaps he needed to get rid of the bed rails! Wouldn't treat his symptoms, but might prevent broken toes.
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Ah right got you.
I had posted on the show last time how the same guy should have been using post-it notes if he had problems remembering, and yes the bed needed to go - this time he made the excuse about not affording a new one then the solution is to remove the frame and put the mattress on the floor
I must agree with you on this Manerva. Three nights ago I was 'suffering' with my RL throughout the night. I was at a stage where I didn't know where to go treatment wise as my local doctors don't have an understanding of severe RL. It was awful and I was not coping very well.
Roll on two days and I'm still up at night, It's 11.30 and although I've been to sleep I'm well awake now. However, I'm not 'suffering' quite as much because now I have a 'treatment plan' of how to deal with my legs and a plan how to get the help that I need. Nothing has changed physically or with the disease but the way that I'm handling it is a lot different.
I'm afraid that I disagree, but then I disagree with most people on here, but then I seem to be the one who can control RLS with diet, and no one else seems to have found a lasting solution.
I disagree with the idea that, anyone should accept the fact that they suffer from rls, and put all their focus into learning to live with it.
Rls is due to neurological damage. In many if not most cases, you can undo chemical damage because the body has amazing powers of plasticity and repair. Given the right nutrition and stimulus even people who have had strokes can recover enough to live an almost normal life.
Hi again, Eryl. I don't think you're disagreeing with anything I've said. Perhaps just what you think I said.
I agree you shouldn't put ALL your focus into dealing with RLS in a psychological way.
I guess most people will try whatever works for them to control the consequences of RLS. Why not include the psychological as well. If you've ever been on a cancer rehabilitation programme, you'd see how this works.
I didn't say learn to live with it and if I had I wouldn't mean passively accepting it.
Actually you may be a good example of someone who is resilient, has a sense of self-efficacy and who feels that they have control over their symptoms. You are very lucky, not everyone has what you've got.
I also have my RLS mostly under control by adhering to a diet. In my case I am on the FODMAP elimination diet. I am having trouble expanding the diet without restarting the RLS but I ensure I am getting enough nourishment so I'm happy where I am and looking for ways to improve.
What diet are you on? I am always interested in details of anything that might help a whole lot of us.
There are quite a few people who have found that diets help them Some just gluten free, some vegan.
There's a cure, or at least relief, in there somewhere but it might not be the same for everyone and there are others for whom it just wont work. I think applying a systematic approach will find the answer quicker than guessing. I would suggest others start with the FODMAP or the Prince Alfred Low Chemical diet and seeing what happens.
Mine is a very long story of discovery. (including the RPAH diet which helped me find that E202 was a trigger for me). It would be akin to a series of 'Silent Witness', but in short, I had been taking a load of supplements for other problems, but none were affecting my rls until I realised that It came on about half an hour after I had eaten something sweetened with sugar. I cut down drastically on food containing added sugar, but noticed that is still came on at the end of a day when I'd eaten a lot of foods containing refined starches. So I cut down on those as well.
Then some members on here put up links to Drs Georgia Ede and Terry Wahls. and things started to fall into place. All the supplements I was taking were on Terry Wahls' list of essentials. and there was only one I wasn't. I then came across the name of Professor Robert Lustig who is on a crusade against added fructose, so has most the commercial food industry fighting him and calling him a maverick, but all his reasoning makes sense to me (except when he tries to explain the biochemistry of the cell!)
I now follow the principles of the Wahls' Protocol. Basically, avoid added sugar and processed food. Cook at home using as many basic ingredients as possible with as little processed ingredients as possible, and keep grain levels down.
I'm now going to trial avoiding inflammatory foods like nightshades, and lectins to see if I'm possibly sensitive to those.
One thing I would add is to be careful of the term "added sugar" you can get plenty of unhealthy sugar from sugar naturally occurring in many products. A good book on this subject is "The Great Aussie Bloke Slim-down" by Peter Fitzsimmons Published by Penguin Random House Australia. Its easy to read but covers a lot.
If you want to avoid many western diseases then losing weight is a good starting point. To lose weight spectacularly a low sugar diet is a good way to go.
In Australia we are starting to get more and more USA food which is usually rich in corn syrup. A really good way to reach 150 kg if that is your aim.
I would class corn syrup as an added sugar. As Lustig says "if a food has a list of ingredients on it, it's not a natural product". Fruit has sugar in it, but it also has a huge amount of fibre, so it passes quickly through the small intestine where fructose is normally absorbed, and into the duodenum, where the microbiome works on the sugar, and breaks it down into safe chemicals, like gas. As Lustig again says "flab of fart".
Good post Manerva! I agree. Like my neurologist says «there is a two way street between the body and the mind»
When I developed RLS a few years ago the neurologist I had seen over a long period of time said he would see me. I had been seeing him with my wife who has a neurological Movement Disorder. After a while, not finding any provable reasons for my leg movements, he suggested that my problem was psychosomatic. In other words the stress of helping my wife had caused physical problems. By this stage I had done my own research and had concluded I had RLS. According to the conclusions reached by the International Research Study Group I had severe orvery severe RLS. For the neurologist to suggest that my problem may be psychological in origin was difficult for me to digest and it took quite a time before the neurologist did accept that I had RLS. Whenever I see or hear the suggestion that it is “all in the mind” my hackles rise. I had a long period of unnecessary suffering before I got a correct diagnosis and helpful treatment
I'm with you there Martino, I think the word "psychosomatic" was once used as a label for Drs to dismiss what they didn't understand, a more subtle way of saying it's all in the mind.
Terrible when actually, the problem is physiological. There are still several conditions that Drs struggle to diagnose, e.g. ME and Fibromyalgia.
The thing is, "all in the mind" is a cop out. Say the problem IS all in the mind. It's still a problem. This view that mental health problems are akin to an excuse or pretense is positively archaic.
They used to think someone suffering severe mental health problems was possessed. Did your neurologist suggest exorcism?
No! But I was introduced to a book by Dr Suzanne O’Sullivan called “It’s all in your head”. Interesting reading! As an aside I suffer from a type of peripheral neuropathy as well as RLS and on my journey getting acquainted with this I have come across ME and fibro and know what a struggle for diagnosis some people have
It's interesting that a thread which started off looking at health psychology gets diverted into diet.
The concepts I mentioned are text book key concepts in health psychology, but there seems to be an aversion to considering it.
I have a theory, and it is just MY theory. People find it easier to look at the physical , because you can almost dispassionately stand outside of your body. I look at my foot, I know it's MY foot, but it's ME looking at it. I am not my foot.
I am sure there are many examples of problems being in your mind but can my brain decide that it won't allow ferritin to pass the blood-brain barrier. Perhaps it can but what can I do to tell my brain that its OK to allow ferritin in? I can't imagine that there is some thinking excercise I can do that will modify this.
Many, many years ago I was diagnosed with post viral syndrome. A nice meaningless phrase and the symptoms were much like chronic fatigue syndrome. No energy and sleeping most of the day. I was told that it was all mental. My solution was very large doses of vitamins, a chinese doctors "tonic" and to take up running. At first I could run about 50 metres and then walk home slowly. After a (long) while I was running 5 kilometres and my chronic fatigue syndrome was gone. Was it mental? I enjoyed a 3 month backpacking holiday around Europe following the formula 1 races.
My apologies that I'm not getting across my message across very clearly. Perhaps it would help of I said there is a difference between TREATING a condition and COPING with a condition.
I was not suggesting at all that psychological measures can TREAT any physical condition. I don't believe there is any "mind over matter" technique for getting iron across the blood brain barrier or making dopamine receptors perform better.
What can be often observed is that two people with the same (physical) health condition, with the same symptoms can react quite differently. One may be COPING with the condition, the other may be NOT COPING.
I have quite a lot of contact with people affected by cancer. As you can imagine this can present them with quite a lot of challenges. Some of them are "living with" cancer, are cured or in remission but are damaged by the treatment. Some are bluntly, terminal.
The relative quality of life (or what remains of it) is observably different between those who cope with their situation and those who don't.
This is irrespective of any TREATMENT.
The difference is largely a matter of the psychological concepts I was trying to introduce which includes Resilience, Self-efficacy, Locus of control and Coping style.
There are members of this forum that clearly demonstrate resilience, self-efficacy, an internal locus of control and a problem focussed Coping style. Just as there are some that don't.
For those people who don't they can be helped to develop resilience and problem solving particularly. There are rehabilitation programmes that are based on these concepts.
It is unfortunate that no such programmes exist for people suffering RLS, because if you're a member of this forum you are aware of whether you're coping or not.
Such cancer programmes look at such things as pain, stress, sleep, diet, exercise etc. They are delivered by large cancer charities. A pity there are no equivalent RLS charities. Certainly the people in the recent appalling TV programme could be helped.
I sense some anger in some of the responses I've had. Understandable if you think I'm saying RLS is in the mind and that it can be TREATED psychologically.
It can't be and I'm not saying it can.
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Hi Manerva! I know what you’re saying, so I’m going to attempt to back you up. I have a theory as to why it might be so hard for people with RLS to accept what you’re saying.
My theory has to do with the definition of the body losing control — control being lost that is hidden vs. control being lost that is visible. The body loses control in all diseases, right? But...in how many other diseases (those besides RLS, and then maybe Parkinson’s) that you know of is that loss of control actually felt (and felt so vividly)? Let’s take your cancer patient example. In this example the body is losing control on the inside and is not felt. Since this loss of control is not felt, coping methods might well work for these people. They can work on stress reduction, etc. WITHOUT having to FEEL the disease. They know it’s there, but they can’t feel it. They can’t feel the control being lost, whereas in RLS you can.
Interesting theory. I agree to some extent, but it's a different sort of control.
With RLS I lose control physically over my body with the involuntary movements. I suppose this might contribute to me perceiving that I have no control over what happens to me generally.
With perceived "locus of control" it's a matter whether you think you can do anything about what's happening to you.
I note members post about trying this or that remedy, what they've obviously put effort into researching things to help themselves. This demonstrates they have an "internal" locus of control. People who have an "external" locus of control, generally, don't do that.
OK, ultimately, there are some things you have no control over, e.g. involuntary movements, but you can have some control over how you react to them.
People tend to have either a perceived internal or external locus of control anyway, it's what you might call "dispositional" . I suppose the lack of control over our bodies due to RLS or Parkinson's MND, cerebral palsy might reinforce our perception of locus of control.
I'm not sure if it quite works like that however. There is a phenomenon known as "learned helplessness" which as it says is learned and is response to circumstances. I think that might be different. It was first observed in concentration camps WW2
With RLS, as with cancer, it's a matter of discovering what you can do and what you can't. Rather than assuming that you can't do anything.
Who said, something like,
Give me the strength to change what can be changed, the courage to accept what cannot be changed and the wisdom to know the difference.
Yes, you may have an explanation of why it happens with RLS (and many other conditions) , but that doesn't mean that the concept is irrelevant.
There's possibly no worse thing than knowing you have a terminal illness about which you can do nothing to prevent. I've seen people leaving this world in despair and I've seen it with dignity and even serenity. What makes the difference?
“Give me the strength..etc”. quoted by Manerva is one from Francis of Assisi. I jotted it down quite a while ago (in difficult times) on one of my phone notes, because I like the point of view.
A whole lot of trees there Manerva but my concern is you will miss the forest many times. Freud and his like may have helped some people but misled a lot more. Coping strategies can be helpful but never, in my view, the main way forward. If someone is suicidal then there may well be a case for psychological support but this is not an 'element of' rls but a RESULT of ongoing suffering (there is a difference which seems to elude you). Each person is different but we can rightly learn and carefully try remedies others have found useful. Psychology has it's place but that is 2nd place. If we remember that (which I believe you are sincerely trying to) there may yet be discovered a healthier forest where the trees (words/speculations) are not overly numerous.
Thanks Nickbaby. You are quite right, I never intended to suggest that Psychology is the main or only way forward. Physical and/or physiological conditions require relevant physical or physiological remedies.
I don’t think anything's eluded me, I have said
“emotional and cognitive REACTIONS to RLS.”
“Both physical and psychological remedies can work together”
“I was referring to how we deal with the EXPERIENCE of having RLS, not treating it.”
“I agree you shouldn't put ALL your focus into dealing with RLS in a psychological way.”
“there is a difference between TREATING a condition and COPING with a condition.”
Which although they don’t say it explicitly, at least, I hope you can see implies that I’m aware there is a difference between RLS and the consequences of RLS.
Perish the thought that you suggest suicidal thoughts is the only consequence of RLS which can be dealt with using a knowledge of psychology In fact, you could say, suicidal thoughts is a sign that someone is NOT coping.
I am aware that sometimes we all find ourselves in a position where we are overwhelmed and not coping, this is where resilience (for example) can influence how well, or how quickly we get through it.
Perhaps you could read through ALL that I’ve written in this thread if you’ve not also already done so.
I’m guessing that it may be because of the stigma and misunderstandings attached to the concept of “Psychology” that people resist it or feel threatened.
I’m merely wishing to inform and all that I’ve said is evidence based, not my opinion.
Healthy debate is one thing, but in this, I feel like I’m having to keep defending myself and this is the last time I’ll do it.
Yes accept most of yuour reasonings there even if I cannot fully agree overall. I do believe psychological support should be used only has a supplement - unless it is found in a particular person to be the crucial issue. btw ... I only mentioned suicide as an example of issues which might bring the need for psychological support into the foreground. Best regards. 🙂
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I think you’re right about the stigma attached to the word «psychology». I put up my defenses once my psychiatrist started harping on the psychological in connection with RLS. my defenses have since broken down due to his challenges to widen my way of seeing things. The more he chipped away at me, the higher my defense wall got and the more viciously protective I became. You want to know what was so interesting, though? I understood him. He was making sense. He was making sense and I got scared that he was making sense. I mean, to use psychology and RLS in the same sentence!! Are you seriously kidding me???? I got scared of what he was doing, so I started to protect myself.
I think the reason why we are so scared of the word «psychology» is that somewhere down the line we have learned that «how dare others suggest that we need to look more intimately at ourselves». If something goes wrong with our systems Heaven help us that we be part of the problem. We want to blame an external locus. We want to blame an outside force and how dare someone come along to suggest we need to look at ourselves and what we’re doing. It is uncomfortable to look at ourselves; it is much easier to lay blame on something outside ourselves.
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I think we're on the same wave length here.
Pyschology is often associated with "Psychiatry" and either may entail you having to look at yourself.
It's easier to "blame" others or blame circumstances.
I used to get students saying "I failed the exam because the questions were too hard" (hmmmm)
We only have to look at ourselves, it's not a matter of blame.
As Viktor E. Frankl said
(I haven't a clue who he was!!!)
"When we are no longer able to change a situation - we are challenged to change ourselves."
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What do/did you teach?
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Retired lecturer. Various subjects including, (as you might guess), psychology and human physiology. Faculty of Health and Social Care.
If anyone's interested you can test yourself.
The Brief Resilience Scale - the higher the score the more resilient you are
I couldn't access the scoring scale for this one without signing up to something I didn't want. I can give a rough scoring guide whch is NOT the validated one. You use my guide at your own risk.
On the coping scales Questionnaire -
Give yourself a point for every time you answer Always or Often to questions with the following numbers
These scales are freely available on the internet and the organisations that post them must deem it safe to post them. I presume that the organisations have considered the issue of intellectual property rights. I am merely posting the links.
I was asked by my GP if I would consider seeing a Psychologist, which I did. He introduced me to the principle of 'Mindfulness' which was successful to a degree but I still needed medication because 'Mindfulness' relaxes you which then exacerbates my RLS. My RLS kicks in at any time when I try to relax!
Hi, yes Mindfulness has it's limitations. I find it impossible to focus on mindfulness breath meditation when my legs (and arms) are doing an impression of a Scottish ceilidh, (no intended criticism of Scottish ceilidhs).
In the mindfulness CBT course I attended it was said, mindfulness is not the same as relaxation. The intention isn't to relax.
But there are some mindfulness techniques that might work in that situation e.g. deliberately focus your attention on the shaking, let it happen, don't judge it and if your thoughts turn to thinking, this is terrible or I have to stop this, as my facilitator used to say, "pat yourself on the back for recognising that your attention has wandered. Then turn your attention back".
"Each time your attention wanders, pat yourself on the back again and turn your attention back again".
Doing this may not help every time, but if you try it on a regular basis it will develop your "mindfulness muscles".
I usually try it in the bath. Keeping the shower screen shut of course and don't put too much bubble bath in!
I find it impossible when I'm just getting the sensations of RLS and the "urge to move". I think I'm lucky because I don't have that so much, because it very quickly turns into involuntary movements.
Additionally, if you can, practice mindfulness techniques at a time of day when you can stay still without RLS attacking you. 20 minutes here or there can carry you through the day.
If there is no such time during the day, then you are suffering augmentation and that isn't amenable to psychology.
The odd 2 minutes also helps to bring back your attention to the here and now. Sometimes it helps to just stop for a second and take note of how you're feeling and what you're thinking. I used to stick little blue stickers around in my house to remind me to do this. On my shaving mirror, (I am a guy by the way), on the front door handle etc. I also have a mindfulness bell app on my phone. Remember to switch the app off in company, it can attract hostile attention when you "bong" in the middle of a meeting or restaurant!
Waiter, there's a bong in my soup!
NOTE* there are different kinds of bong, I am referring to the sound of a gong, a gong bong.
On another level, problem focussed coping is a kind of "meta" technique which involves actively seeking information to -
Analyse and identify the problem
Formulate a SMART goal that you'd like to achieve
Plan actions that will help you achieve the goal
Carry out the plan
Evaluate whether the goal is achieved or not and what affected it
SMART is an acronym "A" stands for Achievable : "R" stands for Realistic! These are both vital, don't set yourself up for failure
This works better if you believe you have some control over things, that yours action can be effective and this will promote your resilience.
You DO still need medication, mindfulness will not stop your legs kicking.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Low score Internal 
Tramadol - All in the Mind!!
All in the mind?
Is there a dedicated support function for people suffering with Sleep disorders in the UK?
Medscape article on RLS
RLS UK CAMPAIGN FOR EDUCATION OF GPS IN THE UK
