Wrong Name

[rkatt]

One of the reasons rls is misunderstood is the name. Imagine there's someone in a room with a mad dog. She runs out. Another person sees her and says she's restless, she has Running Out of Rooms Syndrome. Someone else comments, how neurotic! What a malingerer! In our case the mad dog is wierd sensations, wild irritation, howling pain. We don't 'have an irresistible urge to move our legs'. How odd that would be. We move our legs because we're running from the biting dog.

Change the name to one that makes sense.

Sleep well,

rkatt

[Hidden]

Okay, I get that we are studying the symptom instead of looking for the cause of the symptom. Have I got that right? There must be some commonality in all of us mad dogs that would point to the source. I only know that I am barking mad.

[rkatt in reply to Hidden]

Hi vintage-me. I'm just saying the name rls makes the condition sound harmless and silly and encourages people to misunderstand us as indulgent whingers. A more evocative name might be something like Howling Convulsive Night Horror, but in Latin. Or Inquietus as raffs suggests. People ask me, how are your restless legs? I have to laboriously explain they're not restless (grr), they convulse with many varieties of pain.

Best,

rkatt

[Hidden in reply to rkatt]

Oh I get you, I got it.

[Hidden]

I agree 'Life Destroying Painful Legs' or maybe 'Dolor cosars (inquietum)' would be better.

How about 'Chronic Peripheral Neurological Disease?'

I could go on but for me RLS will always be -

'Soul destroying, sleep negating, life limiting and extremely painful restless body Syndrome' or SDSNLLEPRBS, (which admittedly does bot roll off the tongue like RLS!

[DisneS]

It's similar with CFS. People often assume that you might be a bit lacking in energy and, anyway, they often feel that way themselves! Most people don't understand that the illness can involve a long list of seemingly unrelated symptoms (including RLS)

[Pippins2]

The RLS Foundation actually changed the name to Willis Ekbom Desease or WED for a time ,using the names of 2 doctors who were involved in identifying the condition many years ago.However people did not like it so due to popular demand it reverted back to RLS.

[rkatt in reply to Pippins2]

Yes, I've seen that name used. It's a bit odd-sounding. Like Eggbomb.

[Windwalker]

The medical profession likes names. This one has been named Willis-Ekbom Syndrome and includes all manner body movements that are involuntary. I call my own inability to stay still unless I am medicated, Restless body disease. I hurt all over and jerk my limbs all over. My neurologist has a practice specializing in RLS and associated sleep disorders and says I m the worst case he has.

[rkatt in reply to Windwalker]

Awful. I'm similar, though my doctor doesn't take my problem seriously. Am trying Krotom.

[beady3 in reply to rkatt]

Rkatt how are you getting on did you try Kratom ,if so what was it like and is it doing any good,can you let me know thanks

[rkatt in reply to beady3]

Thanks for asking beady3.

I tried mild Thai Kratom. When it didn't work I upped the dose to 7 heaped teaspoonfuls. This worked but was an overdose. My bedroom felt like a boat in a storm and I got a serious headache. I've ordered three other varieties. Last night I didn't get a result. But I'll keep trying!

I made an appointment with the one doc at my Practice who just may be helpful. The wait was one month. Ten days to go.

I use other remedies based on herbs. And booze.

Not too bad at the moment but living a half-life. Desperate for decent medical treatment.

Hope you are okay. rkatt

[beady3 in reply to rkatt]

Rkatt thanks for reply ,but what I realy want to know is Kratom worth buying does it work ,and if you are going to the docs are you hoping to get medication for rls like us all ,also have you ever had rls med befor,I have never heard of anyone having to wait that long to see a doctor God help us good luck to you x

[rkatt in reply to beady3]

So far Kratom hasn't worked for me but its a work in progress - I'm going to try again tonight with another variety. If I get it to work I'll let you know. It's certainly promising.

I've never taken rls meds before because my doctors have blocked my requests, sometimes with hostility. I believe they think I'm a liar.

I'm going to ask for Tramadol and or Neupro patches. I've gathered these are the best from helpful comments on this site. Thanks for your wishes.

[rkatt in reply to Windwalker]

Phew. Hope your neurologist has prescribed effectively. Best wishes!

[Beckonwood]

I so agree. I often tell people I have a movement disorder. That seems to offer the best answer to what I have that keeps me from enjoying a good night life.

[alison61-jumpylegs]

Hi rkatt, I'm interested in what you say because I do have just that, the irresistible urge to

[alison61-jumpylegs]

Hi kratt, that's interesting cos I do actually have just that, the irresistible urge to move one or other leg. I suspect there are many variations of this syndrome and someone should try to link them all together to make progress on its treatment. I'm going to look at what medication people are using and try to find a pattern between symptoms and treatment. Sorry I didn't reply sooner, my broadband was down for a few days. Take care.

[rkatt in reply to alison61-jumpylegs]

Interesting, alison 61. In my case the urge comes from discomfort and pain. Moving brings (very) temporary relief. Your project re medication sounds valuable. I'm only taking amateur remedies at the moment, but have a GP appointment in 2 weeks, a month after asking. It's an age to wait but have chosen the doc I think is most likely to help. I'm pretty anxious though as all previous attempts have hit a brick wall.