AN EXCERPT FROM MY QUALITY OF LIFE STATEMENT

[TEAH35]

Please take into account that the following is just a 1st draft copy. I therefore request patience be practised while reading. Thank you)

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THIS IS (MY) PERSONAL DESCRIPTION OF RESTLESS LEGS

Within minutes of retiring and desperately trying to find sleep, it will creep up on you, albeit ever so slowly, giving you a very mild warning that it is on the way. You will notice that a slight niggle has emerged, rather like a gentle, (but ever so demanding), tickle in your right ankle. It is not uncomfortable, nor is it painful, it is just there, languishing quietly, tickling you deep inside your ankle. You are not shocked nor are you surprised by it's arrival. After all,

those of us who suffer from this dreadful disease of Restless Legs, are expecting it. The niggle then turns into a tiny shooting dart, that is being shot between your ankles from one side to the other, back and forth, back and forth. This is what I consider to be the 'first wave'. A nuisance, something to be ignored but also a very strong indicator of what is yet to come. You roll over and try hard to ignore it, but one can't, as it is here to stay. And then eventually it starts to fade, albeit so slowly, until it is completely gone. And you sigh with relief because you feel that you can now relax, and you thank God, coz it has gone. Yeah right, for all of 5 seconds. And then it returns. The second wave arrives with a vengeance, with the intensity increasing by at least 10 fold.

The shooting dart is now gone, along with the niggle, only to be replaced by a thick slow moving liquid, that is flowing between your right ankle, back and forth, back and forth, over and over again.The liquid intensifies and is now pounding hard on your ankle, becoming increasingly more difficult to ignore with every hit. Once again you roll over and over, and once again it begins to fade. You sigh once again with relief, but unfortunately, this time, you find that relaxing is totally out of the question as you know only too well what the outcome is going to be. And after the 5 second reprieve it all returns, yep with even more intensity. The annoyance is now driving you crazy. So you roll again and you roll again but you will NOT kick, you will NOT allow it to win. And then it subsides, again for 5 seconds. On its return the movement has accelerated and is now speeding between your ankles. It is no longer flowing, it is now a thick gushing stream, pounding your ankles on the right leg unmercifully with a savage heated revenge. Back and forth back and forth, over and over again. Whoosh, whoosh, whoosh, one can almost hear it. By now your leg is trembling under the strain of not being allowed its insistent scream to move. That uncontrollable urge to move your leg is coming to a peak, but still you will NOT give in, I absolutely refuse to move. The crazy sensations are now gravitating throughout your entire body, as the urge gets stronger and stronger. But we are a stubborn folk, and still we refuse to accommodate that demanding urge.

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(I am somewhat perplexed, can anybody on this site, please tell me why we insist on punishing ourselves like this? There'd be considerable less frustration and stress if we'd just get on with it and accept the inevitable. Don't you agree?)

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I have only ever managed to beat the waves 3 times, as the fourth waves intensity involves the inclusion of RLS pain. And I am afraid that as a child, I was not equipped to deal with it. So unfortunately, the inevitability has arrived, and there is simply no choice, and we have to give in, and we find ourselves kicking, and kicking, and kicking, uncontrollably, for at least 20 times, to satisfy the urge. And what do we do when we find this satisfaction, we rest, for our allotted time ...... 5 whole seconds. This is how you will spend every night, of every year, if you are a child suffering from acute Restless Legs, kicking and kicking continually, totally out of control, for approximately 6 to 8 hours, every single night, without fail.

Until that one momentous night when you come up with the brilliant idea of 'rocking' yourself to find peace. I didn't say sleep. The rocking can be somewhat successful in eliminating the urge to kick, by imitating a surrender to the legs, but unfortunately, it does not have success over the other symptom of RLS, namely insomnia. You might be out of pain, but you still got buckleys of finding any sleep..

[Joolsg]

👏👏👏👏 Brava Teah. Excellent description of our nightly torture.

[Hidden]

Wow, Teah! You describe it so perfectly!

[Zbirth1]

A very apt portrayal Teah35. My symptoms are different but the agony is not. Have you had your iron levels tested? This can be a big culprit & correcting it can bring great relief. Are you taking anything for your RLS? I’m on month five of withdrawal from the evil drug Mirapex. I was prescribed A low-dose opioid, which I absolutely did not want to take, but now I am so thankful that I did. it’s almost magical how well it works for me. Sending thoughts of peaceful slumbers 🥺😴😴😴😴

[Hidden]

An excellent and very graphic description of your experience, you are a word artist too.

Thanks for sharing this.

You description has stimulated a few thoughts in me which I hope you find of interest.

Everybody's experience of RLS must have some similarities as RLS is defined by its symptoms, but individuals' experience of the "sensation" and the "urge to move" may be slightly different. Additionally the words we use to describe it may be different and how we react to it may be different.

I wonder do your symptoms always start in your ankles? I don't recall that mine ever have and also they don't always start in the same place. It can be my thighs, my abdomen, my shoulders. At time of writing it's "niggling" in my wrists. (But that might be something else).

I never get any shooting darts either, or rather not from RLS. I do get sudden jabbing pains, almost anywhere, but that's neuropathy.

The other thing is that what you say you do and the language you use says that you fight it as an enemy. Sometimes I try to relax through the urge to move, but that's usually only if I think there's a chance of getting to sleep despite it.

I don't try to resist it, I just let go and let the kicking happen. In fact it's almost a relief. Kicking's actually less uncomfortable than the sensation.

At one time I could lie in bed for up to 6 hours like that. It was horrible. I don't now. If it doesn't subside after 15 minutes, I get up. Then I try to go to bed again later. If it happens again I get up again. Sometimes I have been up all night.

This has led to me realising that it's better to accept RLS than to fight it. z if you feel the need to move, then move. If you can't sleep, get up and do something positive with your time. You're not going to sleep anyway.

This may not do anything directly to stop your symptoms, but indirectly, it relieves your experience of them.

So I'd say you're right acceptance gives you a better quality of life than "fighting" with RLS.

It doesn't mean that you "give up" doing what you can to prevent RLS