Disease , A syndrome, or a condition ? Maybe you call it a life destroying force of evil . Do we give it too much power over us ? It isn't cancer ,but it can ruin your life , and health ., your relationships . I think most people wonder what the fuss is about ?
WHAT DO YOU THINK RLS IS ? WHAT DO YO... - Restless Legs Syn...
WHAT DO YOU THINK RLS IS ? WHAT DO YOU CALL IT ?
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sweetiepye
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56 Replies
•
I think you've opened up the doors for all sorts of comments!
Here's my view of RLS in relation to you questions.
Is it a syndrome or a condition?
A syndrome is a set of signs or symptoms which always occur together. A syndrome can occur as a result of possibly more than one causative condition.
A condition is a singular specific "health " issue
Example - jaundice is a syndrome in which the skin, fingernails and whites of the eyes become yellow. Urine is darker. There can be itching.
There are quite a few conditions which can cause jaundice, e.g. hepatitis, cirrhosis of the liver, gall stones, pancreatic cancer etc.
"Secondary" RLS can (supposedly) occur as a result of an underlying causative condition of which there are many. In which case it fits the definition of "syndrome"
"Primary" RLS appears in the absence of any underlying causative condition and hence fits the definition of "condition".
However, one recent study proposed that even secondary RLS does not occur unless a person has an innate "susceptibility" to it. (A condition).
Life destroying condition. Splitting hairs perhaps, but RLS, in itself is not fatal.
However in the literature the impact of RLS is often described in terms of "Quality of life" and there are (psychological) tools designed to measure this.
In this sense, yes, RLS can be life destroying. This has been well demonstrated.
Note that as well as physical consequences RLS can cause psychological distress, cognitive impairment, emotional and relationship issues, social issues and spiritual issues.
Spiritual? You say "force of evil" which suggests something about your spiritual views.
Do we give it too much power over us?
My opinion is , yes, we do. There are studies that might support my opinion.
Does it destroy our health? I think it CAN do, but it isn't necessarily so. It depends how much you let it.
It also depends how you define "health"
Here's a challenging question, is somebody with diabetes, or somebody with a disabilty, or somebody with cancer necessarily "unhealthy"?
Is health just the absence of illness?
Note above, that I wrote "health issue: instead of illness. One of my reasons for this is that I don't consider mental health issues to be illnesses. I avoid saying "mental illness"
My opinion is that like many other things, RLS is what you perceive it to be!
If you perceive it as a force of evil, then for you, that's going to be true for you.
If you perceive it as a great big threatening thing then it will cause you anxiety, because anxiety is a reaction to perceived threats.
That's one of the reasons that I believe psychological therapy is probably just as important as biomedical treatment for RLS. Just as it has found to be for those living with cancer.
Do we give it too much power over us?
I think this depends on how severe the RLS is.
If your symptoms are well controlled I suppose it would be natural to feel RLS has little power over you.
On the other hand if you are suffering severe uncontrolled symptoms with little or no relief (due to for instance running out of medication options or going through augmentation) then yes it feels like it has much power over you and in fact in that situation sadly I believe it really does.
You can't help but feel helpless and powerless and distressed when in its full grip!
In the case of augmentation only temporarily hopefully.
I suppose it depends on where you are in your RLS journey. 🤔
• in reply toNettles68
Having power over a condition is not a black or white situation.
There are some things you can have control over and obviously some things you can't.
Unfortunately, helplessness is a common consequence of RLS and this can lead to people feeling they have absolutely no power when they may have some power over some things.
It's also been shown that people with RLS tend to have a low internal "locus of control". This is a personality trait which can have a profound effect on how people perceive the world and how they behave.
As you day" I believe it really does". It's a belief, not a fact. That's how you see it.
I've experienced severe symptoms which I could describe as epilepsy without losing consciousness and sure enough, when they occur you cannot by an act of will stop them.
This doesn't mean you can't have some power over how you react to this situation. In addition you can have power over whether you run out of medication or whether you forget to take it.
It's a case of picking the battles you fight not just giving up on the whole war because some are lost.
Nettles68• in reply to
Hello Manerva
I do agree with much of what you say 😊
Even in the grip of severe symptoms we do have the power to control to a certain degree how we react to what we are going through, this helps us to survive!
I am surviving!
I think however, it is understandable that if symptoms are very severe and uncontrolled it becomes much more of a battle to remain positive and in control and therefore feeling powerful! This is where effective medical treatment does come in.
So as to the question of do we give RLS too much power over ourselves, I do still believe that at times it does get the better of us, has more power over us, whether we like it or not!
This is not down to choice, it is just the nature of the beast we face.
• in reply toNettles68
Of course, but my message is we may not always have control or absolute control, but neither are always helpless or with absolutely no control.
I agree that the more severe the symptoms somebody may be experiencing the more theywill feel they have no control. This is demonstrated in at least one study I've read.
This does, I think, support my view that biomedical treatment on its own is not good enough forRLS on its own.
Nettles68• in reply to
Yes I totally agree with what you are saying.
As well as having safe, effective medications prescribed at suitable dosages, we could also benefit from psychological, emotional support.
I think it would be an extra string in the bow especially when RLS is for whatever reason getting the better of us!
I agree with you. Some things I do or meds work for me. But.... when I go through augmentation it feels like I have no control. Which causes me to have anxiety. It depends on your journey with RLS as you said.
I think many feel the same! It's horrible isn't it!This is why Manerva feels some extra support, (emotional/psychological) could come in useful to help us deal with the distress.
Whatever it is, it's not taken seriously enough by the Medical profession.I have advanced MS and that's taken very seriously but my MS symptoms are nothing compared to my severe RLS.
If it's controlled by meds then it's fine but for those who have failed all the available meds, it completely ruins lives.
Hopefully, research in the US will lead to new meds and better treatment.
Just wish doctors would realise how serious it is.
I agree to what you say. It’s amazing that so little is known about RLS, when it such a miserable thing to have. There is a movement to get doctors taught it in medical school here in the UK. I hope it does.
Yes- I started it. But sadly hardly anyone has written the template emails and letters. I just hope more people read the pinned post and send off the emails and letters. Otherwise the belief that it's not a serious disease will continue......
Unfortunately this is not the first time this has happened and it will not be the last. We are not quite sure why sufferers lack motivation in trying to change things in regards to RLS.
• in reply toJoolsg
I agree that more research needs to be done to discover more effective treatments for RLS with less side effects and risks. This is a priority I'd say.
I'd also agree that it's a great idea to try and promote more training for medical professionals in RLS. The GP especially is the first port of call for somebody who suspects they have RLS.
Judging by the answers I've got to the letters I've sent , this isn'r really going to happen. RLS is not a priority.
That's just an observation of how it is,without judging whether it's right or wrong.
In the light of there being no imminent breakthrough in RLS biomedical treatment and of the unlikelihood of change to the priority of RLS in medical training, perhaps other strategies need to be considered.
It could be said that the emphasis on pursuing biomedical treatment development and training doctors is a an example of how an external locus of controi can influence a person's perceptions and behaviour.
The emphasis is on what can happen in the external world to help with RLS when it might also help to focus what we can do ourselves, to help ourselves. Plus getting help and support to do that.
After all, if there are better drugs and better trained doctors this is still just going to improve the bipmedical treatment of RLS and unless it's perfect then there are still going to be other issues that the medical professiomal cannot deal with.
If an "integrated care" approach is now being taken towards other chronic health conditions it could be applied to RLS. Just seeing a doctor and just getting biochemical help is inadequate.
I think thus forum is amazing that you can join and write about your experiences and share problems. It's a good way of feeling you're not on your own, that people understand you and sympathise. It can be cathartic.
However when people apparently start saying how helpless we are and medical treatment is lacking, then other people agree, then others say that's their experience too and it just reinforces their beliefs and strengthens the perception that we have absolutely no control. That is worrying, beliefs aren't facts and perceptions aren't always realistic.
Truth is not a democracy.
Joolsg• in reply to
Some good points. I don't feel helpless. I feel rage. It can't be right that I know far more than my neurologist about RLS and the available treatments/side effects/ drugs that worsen the disease.I'm also dismayed that this disease is not treated as seriously as cancer or MS. Cancer is very serious and yet decades ago, there was very little treatment. Same with MS. Campaigning and research changed that.Unless we continue to campaign and make our voices heard, there will be no research into causes or new treatments. Why would there be if we don't think it's serious enough to make our voices heard?
Instead of feeling helpless, we need to be more vocal and campaign for change.
As Kaarina points out, the apathy is disheartening.
It's no good coming on here for help and advice and then not being pro active for change.
• in reply toJoolsg
I'm sure you don't feel helpless and I don't particularly either. We may be exceptions.
I suspect that a lot of people with RLS do however, it's documented. When I've had the twitches I don't even feel I've had any control over what my own body does, so I can see where it comes from.
If that actually generalises into a personality trait, as suggested, then it can colour a person's perceptiion of the world.
If you have no control over anything then what's the point of trying.
That might, partially, explain the apathy.
It might actully be a more fundamental strategy to educate RLS sufferers, not only about RLS but about how to assert themselves and articulate their experiences in such a way that they are heard.
Thats partly why I sometoms bang on about the doctor patient relationship nd peoples' right to informed consent and shared decision making.
Joolsg• in reply to
Very good point. It may well explain why people don't see the point in trying.Educating people with RLS to take control of their condition & be better advocates. Mmm....
I'm incredibly lucky that my new GP surgery has incredible GPs who admit they know nothing about RLS but will read all the research articles I send them and prescribe the necessary meds. I know from this website that others are not so lucky.
• in reply toJoolsg
Exactly!
Nettles68• in reply to
It was me who said helpless!Yes helpless and the last thing I need right now is to be made to feel shame for expressing how I've truly felt!
At times I have felt utterly helpless! Is that shameful?
And yet strangely I have kept fighting!
Fighting to help myself mentally.
Fighting to get the medication I need at a level I need.
Fighting to educate myself when all those who really should know how to help haven't got a clue!
Fighting, fighting, fighting, when all the time suffering uncontrollable, off the richter scale distressing symptoms which now are again 24/7!
So tired!
This forum has been an enormous help to me and has helped me to fight but to be made to feel ashamed for saying how I feel, like I am lacking somehow... it's almost the final straw for me
• in reply toNettles68
Oh dear, I am sorry you feel like this.
Apologies if I've witten anything that you felt was referring to you particularly as feeling helpless. I've re-read what I've written in this thread at least and I'm afraid I honestly can't see that I've written anything you would interpret as referring to you.
I believed I was writing in general. It is a documented finding that people with RLS in general feel out of control.
I do respect your concern however. If you could please point out out what I've written that's led to you feeling like this that would be helpful. I can then avoid making the same mistake in future.
As regards feeling ashamed or lacking in some way, again, sorry, but also again, I can't see what I've written specifically to make you feel that way.
I can't see that there's any reason for anybody to feel ashamed about feeling helpless. If anybody does express feeling helpless I see that as an indication that they need help and support rather than being some kind of criticism.
I do appreciate that you are struggling and fighting with your RLS and it must be frustrating and consequently cause a lot of anger. This is not unusual and not uncommon. Again, it is also documented.
Please do continue to express yourself as this can help. Feel free to express also any anger you may feel.
If somebody were to say to me, "you're five foot tall", it sounds a little short so I could intepret it as meaning I'm lacking height. The person saying it however may have simply meant, "you're five foot tall" and nothing more.
Nettles68• in reply to
Hi Manerva,
Thankyou for your thoughtful, kind reply.
I apologise, I am tired and fragile and obviously misunderstood you!
In one of your replies you mentioned 'people who start saying how helpless we are and how medical treatment is lacking...'
as if it were a negative thing to mention because it might influence others negatively?
I had mentioned both of those things just before and so assumed you meant my comment, it made me feel ashamed for having expressed myself, as if I'd said something I shouldn't!
Which is ridiculous because feeling helpless is natural at times, especially under severe circumstances, we have all felt this at some point.
Again I apologise! I am indeed exhausted and sensitive at the moment and I no doubt jumped to conclusions!
I'm not angry, just very tired!
The worst thing through all of this apart from the distress of the symptoms has been the complete lack of understanding by those who are in a position to help, this has only added to the exhaustion and distress and yes helplessness!
Funnily enough I may actually at last be getting somewhere there! But what a slog it has been!
You take care and sorry again for the misunderstanding 😊
• in reply toNettles68
No problem, take care.
serengazer• in reply to
Hi Manerva. I also felt a bit surprised by what seemed like a bit of a callous or simplistic response to people’s feelings of helplessness by not only you but some of your responders. I do believe this wasn’t your intent but it did come across to some of us that way. Unfortunately, helplessness is a common consequence of RLS and this can lead to people feeling they have absolutely no power when they may have some power over some things. You asked for some examples…
“It's also been shown that people with RLS tend to have a low internal "locus (focus?) of control". This is a personality trait which can have a profound effect on how people perceive the world and how they behave.
As you day(say)" I believe it really does". It's a belief, not a fact. That's how you see it.
…
This doesn't mean you can't have some power over how you react to this situation. In addition you can have power over whether you run out of medication or whether you forget to take it.
It's a case of picking the battles you fight not just giving up on the whole war because some are lost.”
“However when people apparently start saying how helpless we are and medical treatment is lacking, then other people agree, then others say that's their experience too and it just reinforces their beliefs and strengthens the perception that we have absolutely no control. That is worrying, beliefs aren't facts and perceptions aren't always realistic.
Truth is not a democracy.”
“Unfortunately this is not the first time this has happened and it will not be the last. We are not quite sure why sufferers lack motivation in trying to change things in regards to RLS.”
“Instead of feeling helpless, we need to be more vocal and campaign for change.
As Kaarina points out, the apathy is disheartening.
It's no good coming on here for help and advice and then not being pro active for change.”
“I'm sure you don't feel helpless and I don't particularly either. We may be exceptions.”
I realize these may be out of order, not exhaustive, etc, but you may get the general idea of the over riding message for those of us who are at our wits end and exhausted.
Each persons situation depends on so many things. For most people the facts of their existence is their truth. Each person needs to be able to speak of their experience honestly. How many decades have they been seeking help, treating and adjusting their existence to accommodate RLS?? The medical and psychological help they can or can’t access, the support systems they can or can’t access(including personal and professional), the accompanying conditions like sleeping disorders, fibro., etc.
I have had RLS since pre-memory, earliest struggles I remember was probably 3 yrs old, told it was in my head all of pre-twenties and definitely caused me to suffer in many aspects of school, continual loss of sleep, have struggled with health profession to get any treatments, pregnancy was a nightmare I still can’t think about without cringing, since my 30’s have tried every treatment allowed(and not), consumed supplements, reacted negatively to too many medications, and then on top of this, I read about treatments in other countries that even my neurologist is not allowed to prescribe as my government won’t allow them to(even though different Drs and specialists have sent in special requests- so frustrating), add to that chronic insomnia and fibromyalgia.
Yes, in the middle of a dark night I feel totally helpless, not understood by my family and friends (they have no clue because they don’t know what I am experiencing!) truly would rather not be alive and sometimes just cry as I walk the floors of my dark house because I can’t sit, stand or lie down. Two marriages down and won’t even consider living with someone as it takes a special person to put up with my twitching and night walking. I try to dance, read, think of others or send positive thoughts to struggling places in the world, I take extra magnesium etc etc. Yet often I watch the sun come up and then choose to enjoy my new day with a smile which surprisingly I usually can honestly do. Because I do love life!
However after nearly 62 years of participating in this dance to stay active, positive and to not go insane; in the area of RLS, I do feel quite helpless and worn out. The only way I keep on going is focusing on the good things in my life and waiting for the next sunrise.
I am truly grateful for and glad for those that have found ways both pharmaceutically and through psychological help to feel hopeful and at least partially in control of their reality. That is encouraging. To those who have had positive responses to their campaigns for recognition, fantastic. It doesn’t seem to work that way in my country.
To those who have stronger symptoms or haven’t been able to access great treatment, that are too tired to fight, just know that you aren’t alone in this.
It has been the greatest thing about this website to know there are others like me out there and that this isn’t in my head so to speak and that I am not just being a weak person. That the fact I am still alive and smiling at 62 is almost a miracle! This is my reality!
A big and sincere thank you to all of you that still have the energy and the avenues to fight for change. I am standing(walking) behind you and definitely sending up prayers as I walk at night!
• in reply toserengazer
Thank you very much for sharing this heartfelt message with the forum and me, apparently, in particular.
I am sorry that your life has been so plagued by RLS and it's consequences.
I am quite touched by what you've written.
I'm not clear however what the point was of including some quotes from.what I've written and what others have written. Especially the latter.
I'm sorry if you felt what I and others wrote was callous.
I know that I've experienced feelings of helplessness and I believe others will have too. I don't see myself, that anybody has intended to be dismissive of that. I'm also not quite clear why it might have come over to you that way.
I had thought that the overiding message was that people with RLS can feel helpless, that it's understandable, it's nothing to feel ashamed of and actually, maybe there's some things you can do about it.
Along with this, perhaps also maybe you're not as helpless as you think.you are.
I am disappointed in what I wrote, because I don't feel I developed it into any practical solutions for dealing with feelings of having no control, although I have touched on this in other threads.
I hope this clarifies it a bit for you.
Your comments are of value.
serengazer• in reply to
Thank you Manerva, I originally was responding to Nettles68 where you asked them to clarify why they had thought your letter was meant for them. So when I changed the response to you I included the quotes that you had asked Nettles for. Haha. Sorry if that was more confusing!
The problem with the written word is that we can only cover a fraction of what our brains are processing and our life experiences so that it is inevitable that what we write will be right on for some folks in that moment and miss the point for others.
At this moment in time I felt some condemnation, as someone who was unable to do more for my own plight. That is on me…
Thanks for all the research and knowledge that you bring to the table. Every thing that is shared brings new things into the light, helps us know our selves better and hopefully spurs us individually into positive change. For those that still feel able to promote change and education in the scientific fields, a heartfelt thank you. For those of us right now that are just hanging on by our fingernails, bless you and know that you are not alone in your experience.
• in reply toserengazer
Ha! You are quite right, I can never write down everything I have in mind.
Best wishes
This! I just went to see a new Neurologist and she had all the buzz words in her bio. Drove 80km. Her comment at the end threw me off. “You know all this, how can I help?”
I was hoping for answers where there are none.
The final answer was 1) sleep study to confirm no apnea. 2) low dose opioids.
Now I am sitting here, pondering if I should make the appointment or not. I have control, I want guidance.
I am one of those that haven’t written. It’s not lack of incentive or motivation. It is possibly that I’m worried about privacy of what I have written.. I do feel something must be done, possibly more up front.It seems the thing that catch the attention of the media is the media itself.
I hate to say this but protests and demonstrations catch people’s eyes. It has to be something that brings shame. The bringing to the fore front in the public eye such as how many people have committed suicide with restless legs.
Yes it should be taught to medical students, but this will take much longer to carry out.. it takes 5-7 years to train a doctor if it was introduced now, it would have to be taught in the present final year of study, to bring any immediate affect which would be what I wanted. Perhaps this is selfish wanting something to happen now, but when I think of the horror of the nights I have had, I can’t help wanting recognition now.
To have an immediate effect it needs to be taught to present day doctors.
Doctors have to keep updated, by reading medical journals tutorials lectures. It also needs more research. For this to happen, it has to be brought to the public eye, for the need to be recognised.
As Covid is hopefully going, could there be a meeting of people with restless legs themselves to bring together those as yourself, who can initiate some sort of action together that would bring about recognition of this nightmare condition?
Thankyou for your honesty 🤗
There is an annual AGM every year. The campaign is to get RLS taught at undergraduate level AND to GPs. That's why we've asked for people to write to the RCGPs. GPs have to take part in continuous training. As most RLS sufferers only ever see a GP about their condition we're asking for it to be taught to GPs.If you write only one letter, then let it be to the RCGPs.
As far as the media- there was an article in the Daily Mail last month and a Channel 5 tv programme ( not very good).
Demonstrations might be helpful but only if backed up by lots of letters to MPs.
We have to start somewhere.
I feel that this may not be the best place to start. Thinking about this it occurs to me who is going to teach the Doctors? There are quite a few restless legs groups, could one of the groups instigate a training programme of volunteers who have restless legs themselves? Who better to teach Drs than a sufferer? It is only these people at present that can lead the way.. they are the only ones that can say what it’s like, the problems faced and the effects on family life. As treatment is hit and miss for lots of people because GPS don’t know how to manage this condition, and perhaps not enough research is done, and the findings presented widely, this could also be presented by the volunteers
In other words , get volunteers who have restless legs, employed voluntarily by the Restless legs Societ,y w ho has the ability and empathy to pass on the problems faced by those with restless legs to GPs. Perhaps become a charity to raise funds so this can be done as in other illnesses such as MS.
I am an old nurse with restless legs. There must be other nurses who have restless legs who would be willing to spend a couple of hours a week in forming this. To find people who know other people that can help. Then these people can train the new GPs.
Well these are my thoughts. Thanks for reading it.
I agree. I volunteer twice a year as a guinea pig for medical students at St George's hospital in London and the students confirm they aren't taught it so I spend 15 minutes talking about it.This forum is run by RLSUK which is the only UK charity for RLS and they backed my campaign to get it taught both at medical school and to GPs.
I also have MS and 28 years ago, no research was being done. That's all changed because people with MS raised funds and campaigned.
RLS UK is desperate for funds but members of this forum seem unaware that they can help by joining RLSUK and paying the small membership fee and buying all online goods by using apps to gift money to RLS UK.
Hi ! It seems that with Manerva letter and yours, that more must be done to raise awareness in the patients themselves as well as Drs. I have to say I’m not aware of most of what is going on. Possibly because I don’t always look at face book or read the letters. Sometimes it seems that reading letters brings my worry on and I feel my restless legs coming on. Perhaps others are the same, which may be why so few take part. It is not apathy but fear. The same is with travelling to meetings. My legs can be very uncomfortable at times when travelling in a car. The problem may lie with ourselves to begin with, to make us more aware of what is being done already. It is only because I read your letter that I’m aware. I never met any one or saw any literature in hospitals that I worked at. I worked in out patients for a while, and there was everything on everything …. Except restless legs and where to get help from. I didn’t have restless legs when I was nursing, but where’s I can remember other literature and read those I I never Remember reading about restless legs, and where to get help. Are there pamphlets on it in hospitals?
It does seem that we need someone to champion the publicity of restless legs, to get money to raise awareness and people to teach about it. It seems a lot to do and how?
Hi Continuous,
There are leaflets that you can order free of charge from RLS-UK for distributing in hospitals, GP surgeries, libraries etc. rls-uk.org/get-involved
I have tried locally on a few occasions and it is not at all easy to get them accepted if they are not NHS leaflets. The surgery was not interested at all but the Day Hospital gladly accepted a large RLS poster which I put on their noticeboard as one enters the building. The library say they have no room on their noticeboard. A local Health shop did accept one - they were aware of RLS but it was not there that long as the pegboard was tiny. The local chemist across the road from the surgery did accept but some time later told me they were only putting NHS leaflets in their rack.
RLSUK does have leaflets about RLS and I have handed them to my neurologist in the past, asking her to put them in the Neurology waiting room where there are many leaflets on MS, Parkinson's. Stroke, epilepsy and tourettes. She smiled and did nothing. So, yes we need to get those leaflets in every hospital Neurology waiting room.Like Manerva, the replies I have received are very dismissive and disappointing. The RCGPs say Health Education England are responsible for the curriculum. HEE say it's RCGPs. They all say they can't fit it in the curriculum. However, Cauda Equina is on the curriculum but is a rare condition. RLS affects over 1 million people in the UK, 12 million in the USA. Of those, 15-20% will have severe RLS.
Severe RLS is far more serious than MS. I speak from experience as I have both. I receive constant, excellent care for my MS but have had to fight tooth and nail to get help for RLS.
I totally agree with your point about not reading too many posts on here. I go through stages of avoiding the website as it's too upsetting and distressing to read over and over again about the appalling suffering and the total lack of help the majority receive, or the criminal negligence some encounter.
It is very upsetting and stressful but that's why I thought I would start a campaign to get it added to the curriculum.
The ABN head of education was tge most helpful. He was very pro changing the curriculum but it has to come from RCGPs and HEE.
The only other thing I can think of is a mass demonstration outside Parliament but how many people would show up? It's easy to copy and paste letters and send them but hardly any forum members have done so. Would they bother to travel to Parliament?
It's a tough one.
I think education leaflets for members may be a better route. If we educate all membersof this forum, they can educate the doctors and hand the leaflets to their GPs.
It will clearly take time. The USA organisation is very proactive, funding important research and regularly arranging demonstrations at Capitol Hill in Washington. However, care in the USA is still poor with many Americans still being refused meds and told that RLS isn't real, it's psychological.
Big Sigh......
I am quite willing to deliver leaflets. Perhaps just putting them with others while looking at them. Perhaps if these leaflets brought shame on the Drs they might do something! A reaction of any sort would be good. If the leaflets where truthful then they would have no argument. Who prints these leaflets, and where does the money come from?
RLSUK. The money comes from the annual membership fee for being a member. It funds this website as well. They are desperate for membership donations as it's a tiny charity. Although 14,000 people use this website, only a fraction of those pay for membership.If you want to join, go to the main page of RLS UK, and sign up.
• in reply toContinuous
I agree with you. I did send the letters and did get two replies.
The overall answer is, I 'm afraid, that RLS is not a priority in an already packed curriculum.
I think it is possibly worth pursuing, but I also think there's other actions that could be pursued.
I agree that another approach would be to raise public awareness. I believe this is actually quite difficult to do as people tend to ignore information that they don't think applies to them.
I think possibly a more significant strategy would be to raise awareness amongst RLS sufferers themselves.
This could be done by preparing people to become "Expert patients". This is a recognised strategy in relation to other chronic health conditions, particularly cancer.
I hope to write a post about this soon.
Going back to doctors. You cannot expect doctors to know everything. However, you are right, they are supposed to engage in CPD, continuing professional development as a requirement for maintaining their registration. At least in the UK. However, it's their personal choice I believe, regarding the focus of their CPD.
More significantly, when a doctor is presented with a clinical problem they're not entirely sure about they are obliged, I believe, to either consult somebody who is likely to be able to help them
OR, they should seek out further information for themselves. I imagine that a part of medical education is not simply imparting knowledge, but also it's about developing critical thinking, problem solving skills and skill in seeking out, appraising and applying evidence.
Whether they're allowed time for that or not, I'm not sure. Probably not.
It looks quite bleak then!
This is why my favourite strategy would be to develop a RLS Expert Patient package. Expert patient programnes are delivered by expert patients, sometimes alongside a health professional.
It would be so helpful for me and hopefully others to have those of you who have responded here reply briefly with exactly what you take for your RLS on a daily basis. I understand that RLS treatments vary significantly between people but I’m so curious to read what works for each if you. Thank to everyone for their thoughtfulness and encouragement. This forum is so helpful.
Nothing worked for me until I was prescribed low-dose methadone (5 mg, twice daily). Since then, I'm back to sleeping 8 hours per day. I consider this prescription to be life-saving.
Thanks for sharing. May I ask if you had any side effects from the drug?
Amazingly enough, I have felt no significant side effects from my low-dose methadone regimen. Perhaps a desire to sleep an hour or two beyond the eight hours this blessed medicine affords me. But as a 75-yr-old retiree, this may just be a normal effect of aging. If I try to get by on less than my prescribed 10 mg per day dosage, I get breakthrough RLS symptoms.
Some people, including myself, wonder whether there might be a creeping tolerance in that methadone, after all, is an opioid. It hasn't happened to me, and I have talked to other RLS patients who have assured me that, even after 10 years, it hasn't happened to them. Perhaps that's because we're on such a low dose. I've been using it for about 3 years.
Do you live in the U.S? I live in Nevada, but have had to go to California to find a doctor knowledgeable and brave enough to prescribe methadone for refractory RLS. I hear that UK sufferers are being denied methadone, but do have access to some other opioids, perhaps with a more hit-or-miss efficacy. Temgesic (cf. buprenorphine) is often mentioned on this board as being an up-and-comer substitute for those unable to access methadone, but note that it is also an opioid.
So glad for you. I told my neurysbout methadone because of this site but the Canadian government won’t approve its use for RLS so no go!! Disappointing
Kayakcarole, I think the only way for you to see what people take and what works for them is to read individual posts from the last few years.It's clear that what works for one person may not work for another. You will see that a large number of people manage to control their RLS by taking a magnesium pill or spraying oil on their legs. Others swear by diet or electronic massage devices. Those with severe RLS need iron infusions or meds.
The overwhelming recurring thread on here is that dopamine agonists work brilliantly at first and then fail totally causing horrendous suffering.
The alternative meds are the Alpha2Delta ligands which seem to work well for many but don't work for those who have had really bad augmentation and difficult withdrawal. Finally, low dose opioids. Again, there are huge differences in which opioids work and which don't.
Methadone is the most effective but at present seems to be available only in the USA, not elsewhere. Buprenorphine is showing incredible results and has been prescribed to many in the UK and Australia.
Thanks so much for your reply, Joolsg.
You’re absolutely right about the huge variety of resources people use for relief. I’ll keep reading posts.
I have personally tried most of the remedies and drugs. Over the last 25 years I have been on Ropinirole, then after augmentation and withdrawal, I tried tramadol and gabapentin. Then Oxycontin and pregabalin.I've tried ALL the supplements and diets for very long periods of time. I've had an Injectafer iron infusion. Just started Buprenorphine with miraculous results and will post about it shortly.
Happy to chat about any of them. No drugs, remedies, diets or gadgets have ever helped since Ropinirole. My RLS was 36/40 on the severity scale even when on Oxycontin, pregabalin and medical cannabis.
It's clear that everyone responds differently so unfortunately it's a case of trial and error.
I'm convinced that if I'd had the iron infusion in 1997 when first dx with RLS during pregnancy, I would never have needed to go down the drug route. I'm sure Ropinirole permanently damaged my dopamine receptors.
First step should always be blood tests and raising serum ferritin to get iron into the brain.
So happy for you that you managed to get prescribed Buprenorphine!
I am so pleased that it is working well for you and I hope that it continues to do so especially knowing how badly you have suffered up to this point!
Really wonderful news! 👍🎉👏
I am taking BUPRENORPHINE AND NALOXONE IN ASUBLINGUAL FILM. it's called Suboxone and I take 1/2 strip at 7:30 am and 1 1/2 at 7:30 pm. 2 mg/o.5 mg per strip. I also take Pregabalin 150 mg capsules. One in am and two in pm. It has taken almost a year to get this dosage and the timing right for me. I still get some breakthrough RLS at night which wakes me and I walk around for 10 min and go back to bed. I can live with this and as my doctor says I may never eliminate it altogether. I also get my iron checked periodically and will have an infusion if it's low. This really works well for me. It's important to get the right kind of iron for an infusion and I will try to find out what that is and will post it here. Apparently it isn't the kind normally used. I am also starting to keep a food journal because I believe that's a part of this whole thing. The above is the result of my having been on ropinirole for years , well over six. I augmented severely and had no idea of what was happening to me . This site and the people here are what saved me. I searched for doctors who would understand and treat me with opioids to help me detox from ropinirole. It took a long time and I had terrible experiences with some ignorant and unfeeling doctors before finding a competent professional sleep specialist . If you are in this situation you have to be persistent . No one will understand what you are going through...On my worst days when I was augmenting I couldn't get through a meal without falling asleep with my face in my plate. Sometimes I would fall off my chair. There was no warning, it just happened and when I woke it took a moment for me to come round. At night I would wake because I had walked into a wall and hit my head. There is just so much more, too much to tell here. So when you think of going from there to where I am today it is a huge improvement and I feel hopeful for my future. I went on vacation this year for the first time in many years . It is still a hard life with constant monitoring and paying attention to med. and diet etc. That probably won't ever change. There is a part of me that knows what is working for me now may not work forever and I may have to go through another circumstance . Stay strong.
Sweetypie, I am so happy for you you have finally found a good, helping dr and especially a quite successful treatment. Well done. And sorry to hear it is still a but of a struggle and a hard life. I hope that will settle a bit more.
May I ask why you take pregabalin together with the buprenorphine/naloxone?
Intake it for the breakthrough RLS, but it doesn't work totally. I'm on a low dose so it could be increased
I'm so pleased Buprenorphine has worked for you. There definitely seems to be a link with women who have been on DAs, augmented severely, had a hellish withdrawal and then found nothing has helped until Buprenorphine. Women and men respond differently to meds but that is always overlooked. Buprenorphine seems to work on women with severe, refractory RLS who have failed other opioids.
I think this needs to be shouted from the rooftops!
Sleep well.
Indeed
The best way to answer this is that “Restless Legs Syndrome” should be used rarely because no one takes it seriously. This neurological disorder is also known as Willis-Ekbom Disease. Stick with that. It’s not a force of evil but rather a lifelong condition that can cause pain and suffering. It’s to be taken seriously.
This post was meant to be a conversation starter and is not necessarily how I feel. It is a good way to get a response and will result in a lot of information. I don't really think RLS is a force of evil, but after I have gone without sleep for several days and walked the floor endlessly I might say that . I am glad you engaged.
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