Can we have a campaign to change the ... - Restless Legs Syn...

Restless Legs Syndrome

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Can we have a campaign to change the name of Restless Legs Syndrome?

Wairahi profile image
Wairahi

RLS is a serious and in its moderate and severe forms a completely debilitating and life-destroying disease. I am sick and tired of friends, acquaintances, and medical people alike treating me as if I am some kind of self-indulgent hypochondriac on those occasions when I need to explain that I am on heavy medication for it. My legs are not “restless“. They thrash violently and involuntarily, as do my arms. It’s a very silly, misleading, and counter-productive name and to be taken seriously as a patient group we need to get it changed. What action do we need to take? Do we need to get up a petition or something?

77 Replies

How's about Willis- Ekbom disease?That should grab a bit of attention.

Sounds important and impressive.🤔

Wairahi profile image
Wairahi in reply to Madlegs1

Sounds good to me. But I would have two questions:

1. Are they identical syndromes?

2. If so, how do we go about getting the medical community to adopt the name?

Parminter profile image
Parminter in reply to Wairahi

Yes, they are. I agree with you entirely, but everyone says that this battle has been fought before, that polls and surveys and votes have been taken, and it still comes out to RLS.And that somehow it is therefore set in stone. (And it costs a bit of money to change the name - how mean and short-sighted).

RLS ought not to mean rigid thinking, but it does, somehow.

It is particularly ridiculous because the nasty feelings are a symptom, not a cause.

I have no doubt that the top specialists would agree. Being a specialist in restless legs, almost universally seen as a bother for neurotic old ladies, is not very good for them, either. Some of them call it WED, and so should we - certainly those of us for whom the disease has been a life-destroyer.

Words matter and I have no doubt whatever that, with a more serious name suitable to every serious condition, we would have solved a lot of our difficulties long ago. So call it WED, Waihari.

Wairahi profile image
Wairahi in reply to Parminter

Thanks Parminter, I hear you.

It’s difficult to understand how sufferers could act against their own interests by allowing this unhelpful name to be perpetuated. How about we have another try?

One has to wonder what possible argument there could be in favour of calling it Restless Leg Syndrome.

Alison7 profile image
Alison7 in reply to Wairahi

I agree with you completely. I think it’s because no one who doesn’t have it can possibly imagine what it feels like whereas for most other conditions there is a way of tuning into it, and 2ndly, and in some ways the most frustrating, very many more folk have the milder version ( & wait till some of them get older, I was one of these people ) & themselves belittle the god awful version we have. I had no idea what my poor Mum was feeling as she fidgeted in the evening or at the theatre or what the night was about to hold foe her.

beeckey profile image
beeckey in reply to Alison7

When we were out walking she would just sit down and say she could not walk any further.Ifeel guilty as i never thought how bad it was but we started taking a wheel chair with us but no one ever put a name to it.My mum explained to me how it felt and i started with it after having surgery after a back operation.Ithink it is hard for people to understand unless they suffer from it but it is the wrong name for it and and people have not a clue

F3dup profile image
F3dup in reply to beeckey

I’ve been on a plane when it was so bad I would have jumped out that’s another side to this travel can be misery and even prohibited to be on public transport is embarrassing when you have no control

OffKilter profile image
OffKilter in reply to Parminter

I agree: I often use Willis-Ekbom Disease in conversation, which requires an educational explanation. Other times I call what I have severe RLS.

Parminter profile image
Parminter in reply to OffKilter

Those who argue to retain the name, usually for indefensible reasons, fail to understand that a name lacking dignity will produce results lacking gravitas.Compared to diseases of similar seriousness, the money for research into WED is utterly derisory.

In a lecture, as I recall, in a given year there were something like 400 research papers for WED compared to many thousands for Parkinson's Disease.

That is what words do.

After one hundred years of the pharmaceutical industry, we still have no medications solely for us. They are all money-making spin-offs from other conditions, and all are very troublesome.

Words, words, words.

Mike-tyson profile image
Mike-tyson in reply to Parminter

I am currently taking 400mg of Gabapentin for RLS backed up with Magnesium butter applied to my lower legs and ankles before I get into bed which helps but the bottom of my legs seems to get dry skin now so use E45 moisturising lotion as required now especially when I am going to bed 😊😊

1Ginge1 profile image
1Ginge1 in reply to Madlegs1

OK, dumb here. Who is Willis Ekbom and I am sure I am going to regret asking this.🤨🤭😱

Joolsg profile image
Joolsg in reply to 1Ginge1

Dr Willis was an English doctor in 1600s who first described the disease and treated it with Opium. Dr Ekbom qualified in Sweden and his work on the disease in the 20th Century led to greater awareness.

1Ginge1 profile image
1Ginge1 in reply to Joolsg

Thank you. I appreciate the history lesson.

F3dup profile image
F3dup in reply to Joolsg

I’m on OxyContin for cronic pain when the rsl kicks in I take more which kicks it back but that means the rsl picks up on this so now the problem is worse cannot see me getting off OxyContin even if they fix the pain I’ve had good results with rick Simpson oil but that an addiction route

kelirock profile image
kelirock in reply to Madlegs1

Willis Ekbom disease is the correct name

99selkies profile image
99selkies in reply to Madlegs1

Yes I think that would be better and its already an established medical title for our symptoms

Restless is not the right word...sounds too trivial...we all know it's far more serious .. Chronic Neural???

Niepowiem profile image
Niepowiem in reply to Allyp69

Hi,

very good question how to change the picture of rls to sound a kill. my view is:

acute peripheral (legs) nephropathy , i hope that sound good for you,

cheers

N

Allyp69 profile image
Allyp69 in reply to Niepowiem

I can't pronounce that!

If only it were acute. Maybe idiopathic?

kelirock profile image
kelirock in reply to Niepowiem

It has already been re named correctly. The name is not used, it needs to be introduced

Manerva profile image
Manerva in reply to Niepowiem

Hmm

Sorry I think if we're going to do this we have to come up with a few names and have a vote on them. We also need to check for accuracy.

Sorry

RLS is not acute.

It's not a peripheral condition it's a condition of the central nervous system.

Its a neuropathy, a nerve conditon not a kidney condition.

I am worried that many people like yourself will bravely put forward suggestions that will get rejected. Not really what I want do.

F3dup profile image
F3dup in reply to Allyp69

That’s the right word trivial that’s how the NHs sees it

I totally agree people dont understand that rls is not only legs it is all over body jerking and restlessness. In people that have this it makes them totally depressed weak and feeling very ill. I have a spinal OP. And a second disc out of my spine which as left me with drop foot, but none of that is any where near the suffering I have with this awfull disabilating rls. Please doctors take us seriously and let's get more research into finding a cure. Yes I wood be the first to sign a petition.

Hi,

doctors don't care unless the is gov.support or big pharma pouring money etc.Imagine, you are a GP see 35-45 patients/day, and 1-2 a week is with rls. What that makes? 200+_ and 1-2 of us well 1% , 2% ? nobody cares, sorry that what it seems to be

N

You know you're rite & that's what matters "I got a new partner 10 months ago & she's more than understanding 'I hope 1 day you will have the same luck as me 1 day 💖

I couldn’t agree more, with you Waipahu something has to change. I agree with Alison7 and Sillyvester19 , whatever else I have ever suffered I would be happy to go through again if I could swap for this awful destructive disease. I have a wonderful, brave friend who also suffers, she has Lupus, has a severe heart condition, had two strokes, had to have bones broken because Lupus had deformed them, yet still says that the restless legs are far worse than any of the above. I feel guilty because my mother was a sufferer and when she would tell me that she never goes to bed, hasn’t slept all night I would say things like “you must of slept a little, nobody goes 24 hours without sleep” or “maybe if you lost a bit of weight it would help”, little then did I know that would become me! I am grateful that I have the opportunity to know, via this site, that I am not alone, my Mother didn’t and must have felt very alone.. I fear for my daughters (my son already suffers) and I pray that a cure is found for them and anyone else’s sons and daughters who may yet suffer. It is debilitating, destructive and frightening for sufferers and their partners who have to witness the suffering and who feel helpless. They are also often the subject of verbal abuse for being able to go to bed and sleep all night!!

I think someone really has to experience it for themselves to understand how awful it is. Even the doctors just cant grasp the devastation of the symptoms and don't have the sympathy or concern as they should. I had a girlfriend experience it ONE night and called me the next day and said " Oh.... Linda I am sooo sorry with what you go through." Other neurological diseases get noticed like Parkinson's. Maybe....Nocturnal Hell Disease.

Hi,

so you were following advises from ppl. was there any for LDN? your life could be different.

cheers

N

lindabass profile image
lindabass in reply to Niepowiem

Are you taking LDN? I'm assuming that you are. How is it helping you?

Niepowiem profile image
Niepowiem in reply to lindabass

Hi,

as you know rls got a few components to it, so ldn takes away the most painful of them. Ldn is not perfect fix as it brings some side effects not permanent or harmful but cumbersome, and everybody is diff. some ppl don't get any side effects at all. I conciser my ldn v.welll controlled.

cheers

N

lindabass profile image
lindabass in reply to Niepowiem

I'm glad it is helping you. Great news! Thank you for sharing because anything that helps you can also help someone else. I will be checking into LDN.

Niepowiem profile image
Niepowiem in reply to lindabass

v,true, if we can help even one person it is a winning already, sadly ldn was never on this forum, it maybe because LDN is not the main stream treatment and not approved by medical establishment so it falls in a gray area as a bar of soap under the sheets. But funny thing enough is that gaba, paba all the stuff is on the table. I went through augmentation (hell) so ...but again ldn is not a free ride just to pop a pill, dose not work this way, it takes some time to find a proper dose. But never the less it works from day one.

cheers

N

LotteM profile image
LotteM in reply to Niepowiem

Niepowiem, LDN has been on this forum. Several times. But not recently. Several people have tried it, some, but few, with success. I tried it as well, after informing myself thoroughly. As ever seriously and for a long enough time. It didn't do anything for me, sadly.

If it helps for your RLS, would you mind to share? About your RLS, what you did before and how you went about using LDN, in what amounts and frequencies etc.? Sorry to say, but just writing "try LDN" is not too helpful.

Niepowiem profile image
Niepowiem in reply to LotteM

hi,

I know what you mean. Ldn is not easy to obtain that would be first barrier "go and try" won't work. And secondly how to take dosing and time wise is very complicated, a lot of ppl can't do it and it won't work for them. I had to give up ldn 3 times, "hitting a wall" if you know what I mean. There is tonnes of recommendations and thousands of ppl so different that this is no simple process at all. Been there but at 3mg it does work. Unfortunately one can't just jump and take 3mg and thing all is done. From my 1 year if I were to start again a fresh man I'd take 3mg for one or two nights to see if ldn is gone. If not I'd not go for it any more. But if it does work than the play begines. Needed to start very, very slowly 0.5mg for a week than increase by 0.25-0.5/weekly to build up. Maybe not even weekly, 2-3 week per increase as ldn boost candida and dormant viruses. An out brake may happen. I had that. After getting your body adjusted to ldn say 1.5mg- max 3 mg I'd jump over to 6mg as per a new Norwegian procedure to avoid its maximum effect at 4.5 mg where I had to give up 3 times due to side effects. Jump right to 6mg where all is milder and ldn is ok. I know it sound weird but that what it is, I hope LotteM that helps, I have a pdf for it or at least had it somewhere (google if interested). But mainly the idea is jump pass 4.5mg to 6-7mg instead.

cheers

N

Hi, I did write a reply to this before but for some reason it evaporated into cyberspace!

I fully appreciate what you say and do agree the name doesn't really express how awful RLS is.

Unfortunately, I think a campaign to get the name changed would be spectacularly difficuilt.

The reason for this is, I believe, that this is the official name for the conditon as identified in the International Classification of Disease (ICD 11).

The latest version of this was published by the World Health Organisation (WHO) in 2020. The ICD is internationally recognised. I've no idea how to campaign with WHO.

ICD 11 names RLS "Restleless Legs Syndrome" and it's classified as a "sleep related Movement Disorder" Code : 7A80.

It may be that individual countries also use their own "coding" system. Then each country may have to launch its own campaign.

In the UK I guess the organisation that could be contacted about the name is the National Institute for Health and Care Excellence (NICE). NICE do publish Clinical Knowledge Summaries (CKSs) on various conditions and update them periodically. The CKS for RLS was updated last year and isn't due for review for some years.

The NICE CKS defines it as Restless Legs Syndrome aka Willis Eckbom Disease, (WED).

As an alternative I don't think Willis Eckbom Disease is particularly evocative either.

In contrast the names of some conditions sound horrendous, but the actual condition isn't e.g. senile dermatosis.

It might be bttber overall to have a campaign to change peoples perception of the condition.

As an example the word "cancer" in itself isn't evocative of anything really. The name of a constellation.

However, if you say to anybody it will immediately evoke a response because it has connotations.

If it's any consolation what the iCD 11 says about RLS is this -

"The symptoms are sufficiently severe to result in significant distress or impairment in personal, family, social, educational, occupational or other important areas of functioning "

NICE CKS states -

"RLS can have an impact on quality of life comparable to that of chronic medical conditions such as type 2 diabetes and osteoarthritis"

cks.nice.org.uk/topics/rest...

Wairahi profile image
Wairahi in reply to Manerva

Hi Manerva, I appreciate very much your experience and your innumerable wise comments and advices. However, on this particular subject I have been involved in lots of campaigns with various bureaucracies over my lifetime and have discovered that it is actually much easier than it first appears. Initially, barriers go up. However, they fall much more easily than expected. Usually all it takes to get a result is 2 or 3 very persistent people writing letters and enlisting the media, over and over again. This is not just me talking, it is a fact well known in the field of issue campaigning, that most change is brought about by just two or 3 leaders with the mostly passive support of a few dozens of others. For example, in my own country, New Zealand, I have a friend who literally single-handedly caused the government to reject expert and departmental advice to adopt the Australian standards on herbal medicines. The Australian standards are written by the pharmaceutical industry to avoid any competition from herbal products, and my friend was able to stop them being introduced here, despite the fact that our government usually kowtows to the Australian government on such matters. So he was up against the big players and won. So my conclusion is that we should “give it the country try” as the expression is, meaning give it another shot.

I would say the first step is for everyone to write to their neurologist and ask them to write to the relevant authorities. I have met quite a few very sweet neurologists in my time, very kind people, and I would expect that by-and-large they would be receptive.

Manerva profile image
Manerva in reply to Wairahi

Thanks for the information. Giving it another shot is probably worthwhile.

We still need some suitable alternative title however.

In addition it may still need some public education about whatever it's called means.

When I first said to my wife "cancer" she didn't blink an eyelid. She had no idea what it meant.

Manerva profile image
Manerva in reply to Wairahi

I can see you know about these things and in which case I suggest yes. Start campaigns.

However, it's still necessary to come up with an alternative name.

I still think there needs to be more widespread awareness about whatever it's called actually means.

To use the same example of "cancer".

Some years ago I told a work colleague I had prostate cancer. Her response was "That's nothing, you have an operation and it's cured".

When I first used the word with my wife, she didn't even blink. Didn't have a clue what it meant!

The work colleague however didn't have the excuse that she's not English.

WideBody profile image
WideBody in reply to Manerva

I do wish this was better known, I have personal experience. It’s not a consolation, it’s life.

"The symptoms (of RLS) are sufficiently severe to result in significant distress or impairment in personal, family, social, educational, occupational or other important areas of functioning "

NICE CKS states -

"RLS can have an impact on quality of life comparable to that of chronic medical conditions such as type 2 diabetes and osteoarthritis"

Yep.

I agree totally people do not understand the seriousness of the condition.They just think it's something you make up even with a note from your GP it's still thought as just in your head.

WideBody profile image
WideBody in reply to landdebbie

I believe my wife, a nurse does not understand RLS. I am not saying my wife has not suffered or has empathy. Indeed just laying next to someone with RLS would be impossible for me. This a very hard disease mentality, at least for me.

In the beginning, I didn’t think the doctor or my wife believed me. Even I didn’t know if this stuff was real or I was making it all up in my head. I know I have the ability to make my RLS really bad by focusing on it. In the beginning, not knowing what was happening, I turned RLS into full blown panic attacks.

Of course the DA drugs and DAWS created enormous problems of their own adding to the mix.

I now believe and understand that my Doctor and wife are really trying their best to help and understand. Ultimately though, it is all on me to figure it out since I am the one experiencing it. That takes a lot of effort and I have been doing this for way too long.

1Ginge1 profile image
1Ginge1 in reply to WideBody

The Dr.s and RN's need to subscribe to this website and READ it. After a few days of reading they shouldn't have any doubts of RLS existence.

Considering how many decades it has taken to get the term RLS known, I would be against that. Most people I speak to know what it means now, so leave it alone, I'd say.

Wairahi profile image
Wairahi in reply to lorrinet

In my experience even nowadays many people have not heard of it and those who have tend to think it is something trivial. I was just in the hospital with another condition for four days, and when I mentioned it to the doctors there was the usual sudden vacuum in the air, by contrast with the “real“ condition I was in for. You could just hear them thinking, “Oh yes, that minor issue“

lorrinet profile image
lorrinet in reply to Wairahi

Perhaps I'm lucky, because I haven't found that. What has surprised me recently is the number of people who reply, usually with a groan, "ooh, I get that too" when I mention RLS.

Wairahi profile image
Wairahi in reply to lorrinet

Yes, a surprising number of people have milder versions -- which can make it all the more difficult for them to understand what the more serious versions are like. I have had the disease for 50 years. It started when I was about 19 and for the first 40 years I treated it with intense yoga (at night) and herbalised oils (which worked very well) and I never imagined I wouldn't be able to keep it under control.

But by 2011 it had gone past that point to where I had to start on DA's and whatnot.

Kaarina profile image
KaarinaAdministrator

This is a 6 year old thread entitled WED Foundation reverts to name RLS Foundation.

healthunlocked.com/rlsuk/po...

Manerva profile image
Manerva in reply to Kaarina

Thanks Kaarina.

I note that there was mention of the "medical" name being changed to WED, but 2 major health organisations currently call it "restless legs" i.e. the WHO and the UK NICE.

I don't know if if it was ever actually changed?

If I was asked if I've got WED, I'd probably say three times!

Kaarina profile image
KaarinaAdministrator in reply to Manerva

RLS-UK carried out a postal vote to its members first so no change was made, thank goodness. It could have been a very costly mistake.

Manerva profile image
Manerva in reply to Kaarina

Thank goodness. I agree.

I've just finished a Zoom call with the Project twenty21 team. They're the medical cannabis team in the UK. I'm doing a video for them about how the cannabis has benefited me and they asked why it's called RLS as it's such a serious disease and the name gives the impression it's just a mild inconvenience.That is from 2 health care campaigners working with Prof. NUTT at Imperial College.

If medical professionals think the name doesn't reflect the seriousness of the disease, I can only imagine what GPs and the general public think of it.

Manerva profile image
Manerva in reply to Joolsg

Just out of interest, I just checked how many "syndromes" there are.

This is where a syndrome is defined as a group of symptoms which consistently occur together or a condition characterised by a set of associated symptoms. I'm really not sure whether RLS is a "condition" because conditions usually have a particular cause.

In any event there are hundreds of syndromes.

Of these a quick scan suggests that not many are named according to their cause (not relevant when there are many causes). Most of them seem to be named according to their symptoms or consequences. Logical since they are symptoms.

Quite a few are fairly horrendously misleading e.g. "CHILD Syndrome".

" Rabbit syndrome".

If you think of some of the nasty sounding words used to describe conditions, you'd have to be careful not to also create a wrong impression (the other way) or just be inaccurate.

E.g. "malignant" - immediately think.of cancer, not all things described as malignant are cancer, but that's the immediate impression.

The only syndrome I found was "neuroleptic malignant syndrome.". It isn't cancer.

"Chronic" isn't always entirely accurate. There are only five "Chronic" syndromes.

To cut a long ramble short, perhaps I'm just a smartie pants, it might be a better strategy to spend energy getting people to recognise that RLS, is serious, debilitating etc.

Thanks for your work with the Project twenty21 team.

I would agree with that and a new name sounds sensible to me. But I fear easier said than done. The medical establishment would need to agree - worldwide.

I do most earnestly think we need a new name. ~~ RLS is terrible horrible and most of us are totally over it.

~~ WED is clumsy because saying “W” adds three syllables (dou-ble-u),

~~ and used as an acronym WED is confusing because it sounds like “married.”

So I suggest the next step is to ask some friendly neurologists what name they would suggest, while at the same time making suggestions ourselves. I suggest that as a group we aim to come up with about 50 alternatives, the more the better. Once we have them in a list I think the right one or two will just stand out as obvious.

Here’s my first suggestion:

~~ Tinagmotic Syndrome, (TS)

~~ “Tinagma” is a Greek word which translates variously as “jerk, jolt, toss, shake, jolt, twitch.

~~ “-osis, -otic” is a suffix occurring in nouns that denote actions, conditions, or states (leukocytosis; osmosis), especially disorders or abnormal states (chlorosis; neurofibromatosis; tuberculosis).

Here’s my second suggestion:

~~ Trelacrotic Syndrome, (TS)

~~ “Trela acra” is a Greek expression which means “crazy limbs“. [Trela:crazy, acra:limbs]

~~ “-osis, -otic” is a suffix (as before) occurring in nouns that denote actions, conditions, or states (leukocytosis; osmosis), especially disorders or abnormal states (chlorosis; neurofibromatosis; tuberculosis

I agree. But know matter the name is it's the actual explanation of what's happening to you and how you suffer is what others don't comprehend. Everyone of us is unique in how RLS impacts our lives. There's nothing concrete upon which those who don't suffer can relate to. They try. Oh they try. Try stretching. Try taking a bath. Try this try that. It's these kind of responses that make you want to poke someone in the eye. It's similar to the stigma around mental health. Just think yourself better.Guess I'm off to bed to think myself to sleep.

Wairahi profile image
Wairahi in reply to ziggypiggy

Very true. And of course one important step in educating family and friends is to give the condition a serious name. If you hear that someone has MS or Parkinson‘s you know immediately that they have a very serious condition and part of the reason is that the very name itself doesn’t belittle the condition or the sufferer.

Manerva profile image
Manerva in reply to Wairahi

Sorry to disgaree with you. If you hear someone has "Parkinsons" you wouldn't know it was necessarily serious from that name. It is ony a man's name. You only know it's serious because you recognise the name and know something about it.

If you'd never heard of it before how would you know how serious it is from the word "Parkinson".

Hence it's more important to educate people about what RLS means, a name which a lot of people may not recognise, but over the years many will have come to recognise. Why then change it so that most people will never have heard of it.

Sorry too about the names you suggest. A name is supposed to indicate what the core or main symptoms of the syndrome are.

Tinagmotic sounds reasonable, but I don't think it could work. "Tinagmotic" doesn't sound particularly serious in fact most people would have to look it up to see what it means.

jerk, jolt etc are not core symptoms of RLS. It's true that some people with RLS do suffer this, but many don't and none of these terms are included in the offcial diagnostic criteria.

Simialrly "crazy limbs"

I think you underestimate the scale of what you're proposing it's one thing to undertake a campaign on a political issue in one country. This is not a political issue and you would be taking on the international medical community whose power should not be underestimated.

I believe you can't expect such organisations as the RLS Foundation (USA) who changed the name to WED six years ago, then changed it back, RLS-UK who never changed it The International RLS Study Group, the Eoropean Alliance for Restless Legs Syndrome and the World Health Organisation to respond to a tiny campaign.

Nor can you expect neurologists to respoind to patients writing to them saying the name should be changed.. They may respond to research studies and authoritative papers published in scientific medical journals because that's what they're trained to do.

When votes were taken six years ago, the majority voted against a change.

Now if you could come up with a plan for a campaign to make both professionals AND the public more aware of what Restless Legs Syndrome is, and how serious it is, that would be great. I'd forget trying to change the name.

LotteM profile image
LotteM in reply to Manerva

I second Manerva and others (eg Munroist, sorry about the others I forgot) that argue for education about the seriousness of RLS rather than focussing on a name change.

Several of the main things that strike me in various official guidelines are:

(1) that RLS is called "inconvenient", but harmless. By the time a person with RLS decides to see her/his gp, RLS most likely has moved far beyond the stage of inconvenience. And as we know, RLs is progressive and severe RLS has a huge detrimental effect on the quality of life, to the point of an increased chance of suicide;

(2) that idiopathic RLS is supposed not to have an underlying cause. It has! It is now widely accepted that vert likely brain iron deficiency (BID) in a specific part of the brain is causally involved in RLS. And instead of patronising and mostly ineffective behavioural advice (no coffee and alcohol, more activity), doctors should first and foremost look at the iron status of patient and at possible causes when it is low to RLS standard (not normal standards);

(3) that RLS is temporary. It is not. It may wax and wane, but in the long term is it chronic. And progressive, meaning it gets worse over time.

What also strikes me time and again is that gos and other doctors don't "see" many people with RLS. How is that possible? An average gp practice in The Netherlands has about 2000 patients. 7-8% of these, that is 140-160 patients will have/develop RLS. And 1-2%, thus 20-40 patients will have/develop severe RLS. I can only conclude they don't get recognised. Which is exactly the reason why we need to raise awareness about the reality of RLS. But how? I am happy to join in, btw.

Manerva profile image
Manerva in reply to LotteM

Gosh, I'm shocked to hear that some guidelines describe RLS as "inconvenient, but harmless"!!!!

The World Health Organisation states

"The symptoms are sufficiently severe to result in significant distress or impairment in personal, family, social, educational, occupational or other important areas of functioning (e.g., due to frequent disruptions in sleep). "

LotteM profile image
LotteM in reply to Manerva

Yep, they are 😱. First lines of the guidelines for gps in The Netherlands. The NL are very conservative in some ways. I have often wishes the UK NICE guidelines would apply in The Nl as well. They appear far more informed and balanced.

Manerva profile image
Manerva in reply to LotteM

They are quite informed by references to studies carried out by names you'd recognise e,g, Garcia-Borreguero and Dr Earley.

They're still not quite up to date however, but very detailed.

Parkinson’s is a good example. Innocuous name but most people know it’s a very impacting progressive and degenerative disease which while not strictly fatal still leads to severe impairment of life and ultimately worsening health . I’d suggest the two names are well established and will probably be ok and what is needed is greater clarity on the impacts and outlook. As far as I’m aware the main impact for most people is sleep deprivation and most people know that in it’s most severe form that leads to many other health problems some fatal including dementia (there’s a good book on sleep by Matthew Walker). Most people will also be aware of how debilitating just a few nights bad sleep can be so imagine a lifetime. I’m not forgetting those who get daytime symptoms which can make life hell for those who cannot rest or partake in activities involving stillness which is a particularly cruel impact as we all know the benefits of rest. Bottom line is that people need to know how it impacts our lives rather than a name change in my view. Some visibility on Radio TV and the press would be good, focusing on the severe impacts and the surprising lack of research and targeted medication. If more women than men are affected then a slot on radio 4 Woman’s Hour about the “forgotten” or “hidden disease”?

In fact the more I think about it the more I believe what is needed is a sort of “press pack“ highlighting the debilitating effects and long-term consequences, the lack of targeted and effective medication, and behind it all the lack of understanding of the underlying mechanism. That would need to be endorsed by the RLS-UK organisation as well as sympathetic neurologists and could then form a basis for engaging allsorts of public and social media channels.

Manerva profile image
Manerva in reply to Munroist

It's shame but there were, was it last year and the year before? - a couple of TV programs on RLS. This would be one way of raising awareness, but I believe they weren't very good, most people were disappointed.

Munroist profile image
Munroist in reply to Manerva

Yes, I saw those programmes and despite presenting a pretty grim picture of people’s lives and sleep deprivation they also failed to elicit much sympathy for some reason. For example I recall one bloke injuring his foot through kicking the wrought iron foot of the bed and thinking why didn’t he just get a bed with no foot. I still feel however that publicising the symptoms and impacts is more relevant than a name change. Or maybe do both at once as a “relaunch”.

Manerva profile image
Manerva in reply to Munroist

Yes I remember the guy who injured himself on his bed. My immediate thought was put a mattress on the floor. A simple enough solution, Rather naughty of me to think, but I felt, rather than evoking sympathy it made him look an idiot.

Well I’ve said my piece and even offered some alternative name suggestions. If people agree with me in general and want to see a name change they will need to swamp this forum with supportive comments. So I’ll shut up now and see what people want.

Parenthetically, I don’t believe that changing the name worldwide is so big a task. Neurologists and their learned Societies internationally are nice people and if there is a patient “revolt” they will be happy to listen. It’s a very small world and I would not be daunted by the global scale of the project.

Over and out for now.

I have read through our suffering comments. I think what hurts our cause the most is that when we are suffering at our peak, it's at night when we are not in public. I play tennis during the day, shop, have lunch with friends, by looking at me they have no idea. I look healthy and fine, even at the doctor's office. You might have an actor on Oprah sharing his ( Michael Fox ) life with Parkinson's on TV, but you also visually see his physical transformation because of his disease. PEOPLE CAN'T SEE OURS. Our pain can't be seen on the outside. Our hands don't shake, etc... That's why we aren't taken serious in my opinion. We need to find a way for people to SEE our suffering.

People see my pain when they say - oh yes I get that so I go to bed! Go to bed!!! That’s the last thing we can do!

Hi,I totally agree,I'm so so annoyed at the reaction of some people when I talk about how horrendous this condition is.i get comments like,"my legs get a bit restless so I walk about a bit or give them a wee rub and they are grand"i want to say something like "go and boil your head,you have no idea what rls really feels like " of course I dont🙂.I visited my gp yesterday for another reason,I mentioned that maybe pramipexole might be causing other problems with me,her response was "why don't you go off them"so if doctors can't fathom the agony we go through how can lay people have a clue.this is me ,walking the floor and crying most of last night.

Wairahi profile image
Wairahi in reply to Whymelord

Exactly ! They just have no idea, and the ridiculous name is a major part of the problem.

I’ve had rsl since 1950 not just legs arms wrists at the moment I’m on OxyContin for cronic pain but the rsl is far worse than the pain without the med unless you have it you can’t understand it to be honest people have no idea how debilitating it is including the medical profession 286 people vomited suicid last year and that’s just the ones who put pen to paper to tell my grandfather suffered the same so far my sun has escaped I’ve tried every thing in the book spend thousands been so drunk I could not stand up but still these signals manage to make my lif missery to the point I did purposely try to stop permanently guess what a and e had no idea what rls was like I’m a freak so maybe it’s time to make a stand I don’t know how but maybe a patition just how’s many of us are there in the uk the blank look from my gp says it all just wish he could experience it for just one night to all off us out there god bless and a peaceful night rsl is not the right description but what is just one last I’ve found if I go in the shower as hot as I can bere on my neck and head veal’s like it confuses the signals doesn’t last long i fact I did this 12 times in one night I’ve also in the middle of winter laded naked on the frosted grass trying to make it stop So yes time to be recognised as a debilitating condition we need help

Wairahi profile image
Wairahi in reply to F3dup

Yes F3dup, I couldn’t agree more. It’s time to take a stand. It’s time for a patient revolution. And Step One is to change the name, or they’ll never take us seriously. You’ve had it for 70 years, I’ve had it for 50 years. That’s too many years wasted. Just think how much more productive citizens and contributing family members we could’ve been.

Just got to add when you tell people they say I have that I get a twitch in my legs sometimes my god they haven’t a clue to the misery is there a way we can find out how many in the uk are in the same boat ?

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