Restless Legs Syndrome (RLS) Discussion Board

I have an idea. Maybe it's stupid, maybe not.

I don't like the name given to our disease - RLS. It's lame. So I propose a contest to come up with an appropriate name commensurate to the suffering it gives. Willis Ekbom disease doesn't do it justice either. I'm thinking if we all started using the new name, correcting doctors, nurses etc. maybe it'll catch on. At the very least it will help our family and friends better understand what we have.

"What do you have?" "I have RLS". "Hmm... can you pass me the salt?
"What do you have?" "I have ________ disease". "Wow, that doesn't sound good. What are the symptoms?"

Anyway, just a thought.

It would take a lot more than all of us using the new name. The name has to be used in the literature for it to catch on. At the suggestion of the International RLS Study Group, a big effort was made around 2014 to re-name the disease and the name Willis-Ekbom disease was chosen by a working group under the auspices of the RLS Foundaion. Around 2016 ish, not nearly enough time for the change to have caught on, the Foundation stopped supporting the change and actively worked to obliterate the new name from the world.

Even so, some researchers publish using the new name (WED), or combine the names as WED/RLS. Some journals may refuse to use the new name, which is a shame.

The advantage of a name like Willis-Ekbom, which says absolutely nothing about the disease, is that it doesn't lead to misconceptions. All attempts to use the name to describe the disease will lead to miscomceptions, because it's too heinous and complex to be captured in a name.

But it would be fun to see what people came up with. Life-altering Sleep Loss due to Relaxation-triggered Circadian Expression of Indescribable Negative Sensations Accompanied by Voluntary Movement in Response to Un-ignorable Urge to Move. LSL for short?

Thanks for the history.

badnights ..... What a wonderful (tongue in cheek) suggestion for a new name.

Polar Bear wrote: ↑

Sat Oct 02, 2021 11:43 am

badnights ..... What a wonderful (tongue in cheek) suggestion for a new name.

Agreed!

I can't sleep and I've been thinking a lot about how if you inflicted our condition on a prisoner it would be breaking international law, so:

Geneva Convention Violation Disease

I like it.

I've settled in on WED. Thank you Badnights - (may you always have good nights).

Thank you! I am wishing for a future in which sleep comes naturally to us all and stays as long as needed.

I'm so fortunate in that I never have trouble getting to sleep at night. On the rare occasion (like this morning) I wake up early with WED symptoms. I popped another 600 mg of Gabapentin today and settled in with morning coffee and the news. I know I shouldn't have the coffee but I'm pretty addicted to it. Feeling better. Funny how the symptoms influence your dreams. You're having a very annoying dream awakening to very annoying WED symptoms.

You're having a very annoying dream awakening to very annoying WED symptoms.

Yes! and sometimes it goes on and on in a frustrating kind of half-sleep, like, it takes forever for me to wake up enough to realize that I'm having symptoms, that I can solve this by waking up fully and getting up, that there is nothing to be gained by trying to solve whatever weirdness is happening in my dream.

badnights wrote: ↑

Fri Mar 04, 2022 2:50 am

You're having a very annoying dream awakening to very annoying WED symptoms.

Yes! and sometimes it goes on and on in a frustrating kind of half-sleep, like, it takes forever for me to wake up enough to realize that I'm having symptoms, that I can solve this by waking up fully and getting up, that there is nothing to be gained by trying to solve whatever weirdness is happening in my dream.

Yep.I think the dream is more annoying/frustrating than waking to the symptoms. Mine was trying to peal a plastic food lid off a sheet of plywood - over and over and over. Then there's the waking but the symptoms push you back into the dream. Then you finally go "enough! I get it... I'm up!

haha exactly!