Description of RLS

[welschrisby]

It seems that there is no single description of what RLS actually feels like. Furthermore, descriptions like "a constant and insatiable need to move the limbs" or " A creepy crawly sensation in the feet", though perfectly accurate, don't really describe how awful these sensations actually are. It seems likely that this gap between suffering and description may contribute to the often cited indifference of the medical profession? In consequence I came up with the following, which I maintain is an accurate description of my symptoms:

It is like waking up to find that you have been mistaken for dead and buried alive. You are completely confined by a coffin buried six feet under the ground. The need to move is overwhelming, but you are totally trapped and you know that death will come slowly. You immediately realise that no one is ever going to come to your rescue. Blind panic overwhelms you as you try desperately to move your cramped limbs. Still you cannot move, the coffin walls seem to press even closer and you sense the weight of earth above.....

It's a bit desperate but my Doctor has since taken my RLS more seriously! I offer this, not with any literary pretensions, but in hope that some of you might find it helpful in finding a way to describe your own suffering.

[Joolsg]

Welschrisby,

Think I'll print that off to show my bloody useless GP. She comes out with utter **** like "oh, I occasionally get that, but we all get aches & pains as we get older. Try drinking 2 glasses of milk and take up voluntary work".

If she really had RLS, she wouldn't come out with such trite platitudes.

That description encapsulates the feeling of nightly torture that is severe RLS.

Well done,

Jools

[welschrisby in reply to Joolsg]

Thanks for your kind comment Jools. I am pleased to be of some use to my fellow sufferers!

[Madlegs1 in reply to welschrisby]

Doesn't do it for me!

I just feel the indescribable need to move my tickly feet.

What you describe is truly scary. I'm glad I don't have that.😅

[Hidden in reply to Joolsg]

Jesus what an incompetent b1tch! Change Drs - this can be a very debilitating and life limiting condition and must be taken seriously by the people that are there to help.

As for the lack of coherent description being problematic - I agree. I think Drs trivialise it when they think its a creepy crawly sensation in the legs at night when it can be terribly painful spasm like jerking along with an irresistible urge to move that barely dents the tension that is coursing through your entire body. Which is made worse by a debilitating exhaustion that isn't strong enough to overcome the intense body pain/sensations to allow the reprieve of sleep and lasting for 18+ hours a day!

[Izzybelle22]

Welschriby, you nailed the definition perfectly!!!!

[mwsteele]

Whoa!!! I thought my description was bad...but yours terrifies me, you must be at your wits end. Yours does sound like something else I've come across in the past but I cannot for the life of me recall what.

[Pippins2]

Welschriby I completely understand that overwhelming need to move but can't connect with the part about not being able to move and being confined in a coffin. Can you explain why you are unable to move? The only time that I have experience anything like that is during acouple of episodes of sleep paralysis not during a RLS attack,

Pippins2 x

[Joolsg]

I agree Pipps that I don't feel confined in a tight space but, the sense of panic when RLS kicks off and not being able to sleep/rest is overwhelming & that desperate description by Welschriby encapsulates that panic.

And Raffs, you're right my doctor is totally inconsiderate & out of touch but, at least she prescribes the drugs I need after I've printed off all the pages from this website and NICE =otherwise I would definitely change doctors. Needs must...

[Hidden in reply to Joolsg]

That was aimed particularly at welschrisby's Dr but it can apply to many. If they prescribe the drugs you need after requesting them then you are on to a winner!

[Joolsg in reply to Hidden]

Got to keep our drug dealers onside! Back to bed now to catch up on sleep....

[John_naylor]

Hmmm! Doesn't relate to me but it would be really good to define the sensation better. Mine is not severe pain but a serious tickling inside the limb as though I am being tortured and only movement relieves it.

[Summer194]

What an apt description of how RLS can be which provides some insight to the severity and seriousness of it. I got up 10 times the other night because of it - and needed to walk around each time. I am experimenting with not consuming certain things - currently alcohol - and see if there is an improvement. I know that reducing or giving up beer can only have a good result in time for sleeping. I have often had RLS on long flights which is really no fun !

[Ozxy]

Trying to describe symptoms of rls is not easy . Mine is a sensation mainly coming from the groin and surging through my legs and uncontrollable movement then the sensation surges up again then the need to move, rub, kick anything to ease this terrible feeling I wouldnt describe it as pain but a deep sensation . Ihave reduced my ropinerole now to 2mg and suffering during day but seem ok at night