RLS - the name.

[PeterCH]

Having suffered with this for some years and now getting worse, I wonder if it is time for medical practitioners (and those afflicted) to stop calling it RLS, as it sounds rather tame and encourages people to think of it as just a mild/passing condition. Willis-Ekbom disease is its correct name and is a debilitating and often serious neurological condition.

Reading many stories on here emphasises that it is far from being mild or a passing condition and using "RLS" may not help in raising its profile and it's seemingly and generally poor understanding/treatment.

[Joolsg]

Totally agree. This has been debated so many times over the last 2 decades.Unfortunately- RLS has now been used in all science research papers and medical papers for over 40 years. Change is difficult.

It really is time for UK doctors to realise it is a more serious disease than MS.

[PeterCH in reply to Joolsg]

If this is “more serious than MS” then there really is a problem. 2 decades ago, ME wasn’t taken seriously and it is debatable if it is now with the public generally and the NHS. Take care

[Joolsg in reply to PeterCH]

I have both diseases. And RLS is by far the worst.MS has had billions spent on research and new medications over the last 20 years. Treatment is now excellent. So the disease can be 'stopped in its tracks' for newly diagnosed.

When I was diagnosed 33 years ago- there were zero treatments and prognosis was poor. Now- newly diagnosed people have excellent prognosis.

That's what we need for RLS. Billions in research needs to be spent on training, education and finding new medications.

It would help if GPs and neurologists were taught the basics.

[PeterCH in reply to Joolsg]

Indeed...one of my recent RLS visits (although the GP was doing her best) was me raising issues gleaned from here and NICE. In fact the ability to 'take control' of one's health is no bad thing but, as you say, even the "basics" seem to be missing. The GP seemed to know nothing about Augmentation.

Given that NICE seemed to have changed their minds on Ropinirole (in my case just after starting) it begs a question as to what THEY are up to?

[PeterCH in reply to Joolsg]

Is they a/any connection between MS and RLS?

[Joolsg in reply to PeterCH]

MS causes scarring in the spinal column & brain so damages dopamine receptors and affects the flow of dopamine. 30% of MS patients have RLS. Also 30% of Parkinson's Disease patients have RLS.But if you have RLS- there are many different causes so you will not necessarily develop MS or PD.

And UK education is at least 10 years behind best practice.

NICE cks guidance changed recently as a result of RLS-UK campaigns, the recent media reports about the extremely high rates of Impulse Control Disorder and the new American Academy of Sleep Medicine Guidance.

BUT - GPs still know zero. The RCGPs only agreed to add it to the curriculum because of RLS-UK campaigns and the recent detrimental media coverage.

As they haven't consulted RLS-UK to find out what they should be teaching on the curriculum- I doubt much will change.

It really is outrageous. The most common neurological disease in the world- & UK doctors know zero.

[PeterCH in reply to Joolsg]

Many thanks for the information. Take care

[Simkin in reply to Joolsg]

Joolsg I knew you had MS but I had no idea that you consider RLS far worse. When I talk to a friend, whose daughter was diagnosed with MS two years ago, I always feel guilty when I complain to her about my legs because I felt MS must be so much worse. So it is helpful hearing your point of view when you have both.When we last had to vote about changing the name now to WE I was one of the ones who voted against.

I agree with what you say but I just felt people are at last slowly beginning to understand what RLS is but if we change to its true medical name we have to start all over again explaining what WE is.

[Joolsg in reply to Simkin]

Yep. That's true about the name.MS now is so well treated- with highly effective drugs- that newly diagnosed will lead an almost normal life.

MS pain and spasms and loss of walking ability and bowel and bladder loss are all horrible symptoms. But they come and go. And you can sleep and rest through most of them.

But RLS sleep deprivation and that horrible 'wound up' sensation and the creepy crawly RLS is non stop for most RLS Patients. Perfect torture. That's why most RLS patients self harm to cause distraction pain. The pain is preferable to the creepy crawly, shredded nerve feeling.

I always tell any neurologist I speak to that if I could choose to be cured of either MS or RLS - it's always going to be RLS.

They are surprised. They treat MS as a very serious disease.

I just hope it makes them realise that Severe RLS is actually a more serious disease. Especially as there is such poor knowledge and treatment and only gabapentinoids and opioids to treat it.

I also say that if we get the money & research spent on RLS- big pharma will find many new drugs to treat it effectively. That's what happened in the late 1990s with MS. Zero treatment when I was diagnosed. Now- there are around 10 highly effective drugs which 'reset' the immune system.

But first we have to teach the basics to doctors. Then everyone with RLS needs to start fundraising so new drugs can be developed.

[PeterCH in reply to Joolsg]

This is very helpful. Thank you

[Oscarcat63]

I agree. Rls sounds so.....trite.There was an article in one of the newspapers about it (reproduced on here) some time last year...

The sheer amount of commenters recommending Magnesium supplements was astounding...when for many many sufferers Magnesium does sod all to help !

But say Willis-Ekbom Disease and well THAT's a neurological disorder (Ooh and Ah).

Of course they are the same condition, but longer names with 'disease' tacked onto the end sound much better !

[PeterCH in reply to Oscarcat63]

I think the issue of the ‘more important’ sounding name was what I was thinking.