Changing the name to 'Restless Leg Disease'

[Hgaguk89]

I really think if we are going to get this disease taken more seriously, the name needs to be changed.

Is there a way of keeping abreast of on going studies/ research? If no research is on going, that is a red flag. The name MUST BE CHANGED.

My intense RLD has given way to constant mild tapping throughout the day... which has me in tears... id love to think something somewhere was being done, but it's not... I don't understand the mindset of 'RLS' members not wanting to change the name...

[Madlegs1]

I suppose the answer is firstly, it just semantics-a word.

However, syndrome is correct because the diagnosis consists of meeting a number of criteria- five altogether.

Personally, I prefer Syndrome because Disease sounds dirty and as if it would be infectious . That's purely my take and not attributable to any official sources.

This would not be the first raising ofcthis particular hare- and generally people seem to be happy with Syndrome.

It is definitely getting more research attention over the years, but nothing like what it deserves, given the misery it causes.

Good luck.

[Hidden]

I agree with Madlegs, it's semantics. There are 'syndromes' that are life-threatening (eg serotonin syndrome) and the fact that these are 'syndromes' does not take away the seriousness of those conditions.

My own view is that it is the restless leg (or periodic leg movement) bit of the description that is most unhelpful in the sense it does sound rather trivial to the non-sufferer. On telling my director at work that I had been off work for months with restless legs syndrome, he looked at me with distrust and said "Twitchy legs? My mum has that, makes it very uncomfortable for her at the opera". (And yes, he does perfectly fit the stereotype that some of you might be thinking of right now!)

I now say I have a neurological condition resulting in sleep and movement disorders which mean I am chronically sleep deprived and often in pain, and have associated anxiety and depression.

I don't see how sufferers of any condition/disorder/disease/syndrome can force a change in the name that will be recognised by the wider medical community. In any event I do not think that would make a jot of difference in terms of it attracting funding for research and ensuring health professionals were appropriately trained in recognising and treating it.

Sadly, there are many chronic conditions that have a huge impact on quality of life and, no doubt, shorten lives even if the condition is not itself considered to be life-threatening - and these patients are being let down in the same way we are. Depression, fybromyalgia, chronic fatigue syndrome, chronic pain, to name but a few that close friends/family have. I have a sneaky suspicion that one day a common cause will be found for many of these currently unexplained (and largely ignored) conditions.

[Parminter]

We have had this discussion before

I agree with you, but like TATTiana it is the 'restless legs' bit that I think is most misleading and ultimately harmful.

But unlike all of you, I do not think that it is 'just semantics'. Words have immense power, and the name RLS has not served us well. It is a very silly name.

I like the name WED, because it gives recognition to two exceptional physicians who understood the seriousness of this condition, and who deserve our profound thanks.

I completely disagree that nothing is being done. There are outstanding researchers who are working now, and who make regular breakthroughs in understanding the complexities and seriousness of WED.

Amongst others are Doctor Mark Buchfuhrer, Doctor Christopher Earley, Professor Sergi Ferre, Doctor Brian Koo, Doctor William Ondo and Doctor John Winkelmann. If you do not yet know their names, then perhaps you should do a little googling. It will make you feel better about the future to know that such fine scientists are labouring hard on our behalf.

[lorrinet]

Since many of us have this horrible disorder all over our bodies, not just the legs, I always refer to it as 'Restless Limb Syndrome'. My doctor insisted it only occurs in the legs, so I printed out a load of stuff for her to read, and she now accepts it. She wasn't the only medical person I saw who believed this, and in my view whatever it's called, it should include 'limb'.

[LisztLover]

It is what it is...changing the name probably won’t change anything, especially the suffering associated with it. Just my opinion...