Renaming it 'Restless Legs Nervous System Disease?

[Hgaguk89]

Restless leg syndrome doesn't seem to carry enough weight. Obviously were all exhausted and too caught up in the disease to go out and campaign for awareness- and more research. More research must be done though. What about Restless Legs nervous system disease? Or RLNSD? We can't stay stuck in the catch 22 of being too sick/exhausted/ misunderstood to get research done. We need campaigns about our Living in Misery. Restless Legs Syndrome seems a very difficult place to start, and I believe we will continue to be maligned if we stick to that term

[Hgaguk89]

Rls sounds very trivial... unless you're living with this disease... it's very easy to dismiss... that's why I'm suggesting RLNSD

[btthemd]

YES, YES, YES, We were just talking about that very subject. When you say syndrome it seems like its something that SOME people acquire but no big deal. I feel that in order to get the medical community to listen to our cryies we need to rename the disease. It' s not a syndrome but a real disease that changes the quality of life for us and can lead to early death due to lack of proper sleep. Just look at the sleep studies and how important it is to get proper sleep, The medical community have identified 5 major stages of sleep and if you are missing some of them it is said to reduce your lifespan by over 5 years. Not to mention its a drag living under the RLS conditions. So YES, YES, YES let's keep talking about the "Restless leg disease" or some other name that gives it some punch. My ideas from good ole AZ. PS: A web seminar on Mon. Dec 10 at 2-3pm Arizona time. got the info. from RLS Org if you can listen it MAY have some new ideas. Lots of sympathy to all you sufferers, you are not alone.

[involuntarydancer]

Rather than using a name, I tell people that I am suffering from a non-terminal neurological disorder of the brain that has a profound impact on my quality of life.

[Pam34 in reply to involuntarydancer]

I must remember that one! Perfect 👌

[Suebeloo]

When I was in hospital recently (for something completely unrelated), and hadn't been able to take my meds for RLS, the nurse was alarmed at the intensity of pain I was in, and also at the contortions I was performing due to what she referred to as 'jumpy legs'. It's just not taken seriously.

[Graham3196 in reply to Suebeloo]

As an unimportant aside RLS has been known in my family as "jumpy legs" for 100 years but I don't remember anyone else using the term. We all knew what we meant.

Graham

[borrowedlight in reply to Graham3196]

It was always called jumpy legs in my family too. My Dad had it and my sister and I inherited it.

[RLS1952 in reply to Graham3196]

Silly feet in our family

[Mona23]

It’s actually called Willis-Ekbom disease (or, WED). Changing the name won’t make people (Dr.’s) take it more seriously.

[Parminter]

People and organisations with a lot of weight have tried to give it its proper name - Willis Ekbom Disease - as Mona suggested.

I do not quite agree that changing the name will make no difference. Words are hugely important.

If we all call it WED and insist that others do, we might make a change.

What if we started a movement on this site, rather than expecting others to do it for us?

And research continues steadily. There are fine scientists who are working hard to understand this complex disease and to help us. Do not discount them, they have made a number of important breakthroughs over the last few years.

If you become a member or the Restless Legs Syndrome Foundation (who tried very hard to get the name changed to WED) your small annual subscription will help to finance research. It is one thing you can do to help. I have.

So, if there is a moderator reading this, may we please start calling this disease by its proper name, to give it the gravity it deserves?

[Kaarina Administrator in reply to Parminter]

healthunlocked.com/rlsuk/po...

[Parminter in reply to Kaarina]

Thanks Kaarina. However, if you can change it one way, can you not change it back again? There cannot be a severe sufferer on the planet who does not think RLS is a wishy-washy term. I have little doubt that the use of the term has led, in part, to a vast misunderstanding of this condition. There cannot be many amongst us who have not hit brick walls with our health providers, year after year.

Nothing is set in stone.

[Kaarina Administrator in reply to Parminter]

A postal vote was carried out, asking our UK members for their thoughts. An overwhelming majority favoured retaining the term RLS rather than adopting the term WED, so we committed to retaining our existing name RLS-UK and respecting our members' views.

[Hidden in reply to Parminter]

I agree but also see the message from Kaarina.

I just want much more funding for research and a recognition of how absolutely awful it us.

All of us will have been disappointed in the TV programme in the UK a year or 2 ago which just did not do the condition justice or demonstrate the degree of suffering.

Even if filmed and informed properly it seems to be impossible for non sufferers to understand what it feels like and why we are pacing about or waking frequently or not being able to get back to sleep. For most other conditions fellow humans seem to be able to empathise and sympathise. For RLS it seems impossible to tune into unless you have it. Even when my Mum had what she called her 'fidgety feet' I didn't understand what she was feeling till I got it myself.

Even mild sufferers don't seem to 'get' it. I have friends who have it occasionally and say in a throwaway way 'well I just raise my legs and cycle in the air for a wee while' as if I am making a huge fuss over what they cope with with ease.

[Parminter in reply to Hidden]

Let us put aside the fact that democratic votes do not always bring the best results.....Brexit and Trump, anyone?

I have had this condition for at least sixty years, and during the first few decades when all that was necessary was stretching, and all that was lost was a few hours of sleep from time to time, the name RLS sufficed.

However, when dangerous drugs became necessary, and peaceful sleep became almost unknown by day or by night, when I became one of the 0.5% of serious sufferers, when my entire life started going down the tubes, when in fact there was little life left, then I wanted my condition to get a little more respect, recognition, and serious assistance...... that is when the name WED becomes a serious name for a very serious disease.

I think that NOT adopting the name WED was an error. And I think that mistakes can be corrected.

[Kaarina Administrator in reply to Parminter]

Did you read nightdancer's posting on the link I put up, further up the page?

[Hidden in reply to Parminter]

Its proper name is Restless Leg Syndrome.

[John_naylor]

Well I call it Restless Limb Syndrome, it’s not just legs!

I remember going in to see my GP and said “it’s my Willis Ekbom Disease, Doctor, I think I am augmenting in the Dopamine Agonists that you gave me”. He had a laugh then got me to explain what I was talking about.

[auntiesioux]

Hi, I posted the same question a few months back referring to RLS as Willis Eikbon Disease

(WED) as the doctors who named or discovered this. A few physicians are now using this name but the consensus of this forum were not in favor. Apparently this has been discussed previously and for some reason RLS is favored. I totally agree with you as that most people unless they are closely involved with the disease as in they have it or their bed partner does, "restless legs" is a a 'so what' and carries no impact. Aside, RLS is not just in the legs, it can affect your arms not to mention a feeling of un-ease in entire body.

So, of pleading my case to this forum, although several people agreed, I just speak of RLS here and give more validity when outside of this forum by speaking in terms of Willis Eikbon disease. If someone is interested, they will ask what that is, if not I move on from their same place of not giving a 'hoot' abut RLS or they think they have it to for some unrelated minor symptom. This disease is so very prevalent and can be very debilitating

I am waiting for research be funded for the etiology not just money for another drug.

Thanks for bringing this up again and expressing your thoughts. Auntie Sioux

[Kaarina Administrator in reply to auntiesioux]

It is Willis-Ekbom Disease not Willis-Eikbon Disease.

Please let me know where you have seen it written Willis-Eikbon Disease.

[Hgaguk89]

Is there a way of keeping abreast of on going studies/ research?

My intense RLD has given way to mild tapping throughout the day, which still disrupts my life and id love to think something somewhere was being done

The only reason I suggest changing the name is it would get the disease taken more seriously

[Mijmijkey74]

I am completely exhausted from rls but not sure if that's even what I have as no GP or doctor has suggested that's what it is. Am having nerve studies done very very soon but not for rls but walking issues and shaking from a coma I was in a 3 years ago next Jan. Here what goes on with me. Can't get my feet or lower legs comfortable, they very very hot inside but not burning hot and no tingling sensations, only if they are continuesly cool can I then sleep which isn't possible to achieve as everything ultimately heats up from body warmth. My legs move about on their own trying to get cool and twitch, I end up with one leg dangling off the end of one side of the bed and the other off the other side of the bed spread out starfish shape, my feet have a strange Feering in them, I have to shove my feet down the side of the bed to crush them tight for relief or down the side of the sofas seat we often have our backs resting against and bums sat on. That gap between back of sofa before seat is where my feet end up being pushed into for relief. I don't sleep much at all, feet and lower legs can't be resting on anything that could heat up from the warmth of my legs and feet. They twitch and jerk and move about, but if I stare at them they stop and as soon as my focus on them is gone they start up again. If I fall asleep having found a cool squashed position for them as soon as they heat up again they start twitching, jerking, moving and that wakes me up mid twitch, jerk, move or kick. My upper body jerks me awake mid jerk, twitch to and that happens whilst I'm awake but the legs and feet thing only when lying down or they are in a restricted space. Have actually end up in the cinema and on a plane kicking forcefully the backs of chairs in a pushing motion not just kick kick kick but more my feet and legs on back of chairs forcefully pushing them forwards trying to outstretch my legs. End up with my legs resting on the tops of seats head rests at times for relief. My legs and feet have such a strange sensation in them that I cannot explain in anyway apart from saying an irritable irritated as in mood not itch uncontrollable after sound and sensation heard and felt when something metal and hollow is struck, the sound and sensation after the clang, but nothing like a buzzing vibration from a mobile phone, toothbrush or vibratory. Lol, it's only that after sound and feeling felt from struck hollow metal like a church bell after it has donged and standing near enough to hear and feel the after effect reverberation from the song sound. That's in my lower legs. I guess a reverberation with heat not fire and need to be squahed/crushed. My legs and feet need to push against things. Trying to sleep in a space smaller than me length ways means my legs and feet can push against the footboard all the like to allow me to sleep so they can settle because I'm able to appease the middles of the soles of my feet then to stop that sensation in my legs and feet. I need a device that can squeeze each foot all night long like a man's hand squeezing when giving foot massage, with a cooling device on them to cool legs and feet and allow me to hook the devices up to a frame so my legs and feet are raised dangling slightly elevated. Like the traction device for a broken leg. That would be bliss for my feet and legs that kind of a device. Anyway having nerve studies done very very soon. Hopefully a cause for this will be found. I take no meds other than fostair, spiriva and salamol inhalers

[Joolsg in reply to Mijmijkey74]

Hi mijmijkey

You should start a new post if you want members to see what you’ve written. This is an old thread and won’t be seen by many members.

[Mijmijkey74 in reply to Joolsg]

Thanks for the advice. Not sure where I thought that post was going. Had the nerve conduction studies done. The person doing the test said nerves fine so must be something else. Also had a MRI of my brain done same day 8th of Aug, heard nothing back yet despite having rang for results in August to be told Doctor was on holiday. Suppose no news is good news. Oddly the very painful and powerful electrical shocks/impulses to my legs appears to have done something to help with my restless legs and walking issues. It was almost like my nerves and muscles needed those jolts to wake them up again fully after my coma. Very odd indeed.