Improved symptoms - what now?

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

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Polar Bear
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Re: Improved symptoms - what now?

Postby Polar Bear » Mon Jan 30, 2017 4:19 pm

legsbestill - what about the urge to move? Do you have the intense cannot be ignored must get up and get moving?
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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legsbestill
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Re: Improved symptoms - what now?

Postby legsbestill » Mon Jan 30, 2017 5:59 pm

Yes, I still get the urge to move but it tends to come - bizzarely - in the early evening say about 7.30 to 9.00 and then none until about 4.30 am when it starts up agaub. Often it goes away again around 7.00 am but it can last well into the morning and today it hasn't really gone away all day. It is NOWHERE near as violent as it was last summer/autumn when it would literally wrench me almost physically out of bed over and over. Now it is less severe, not quite as minor as to be described as an irritation - I would never be able to sleep through it - but sometimes I can stay in bed with it for a while, - the usual vain hoping that it will go away. Usually, I have to get up. Once I get up, it is much less obvious (whereas previously it was still very uncomfortable even when I was up and about). For example, I can feel it there now (it is just before 6.00 pm) - had it more or less all day - but it is more of an unpleasant sensation - I am able to continue to sit and type. So much more bearable except for the sleep deprivation.

legsbestill
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Re: Improved symptoms - what now?

Postby legsbestill » Mon Jan 30, 2017 6:04 pm

I get it as a sensation rather than a pain, a horrible crawling sensation that seems to emanate from the small of my back and work its way down my legs. It builds to a crescendo if I make a huge effort no to move and then recedes with another one coming almost immediately afterwards.

badnights
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Re: Improved symptoms - what now?

Postby badnights » Tue Jan 31, 2017 9:31 am

Wow, yours recedes and regrows? Mine never recedes. It builds and builds and builds, forever on the cusp of an explosion, getting closer and closer, like using smaller and smaller rectangles to more accurately approach the area under a curve. Closer and closer but never there. Until I catapult myself, because if I leave it long enough, the movement switches from voluntary to involuntary.
Beth - Wishing you all restful sleep tonight
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Polar Bear
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Re: Improved symptoms - what now?

Postby Polar Bear » Tue Jan 31, 2017 10:08 am

badnights - I could have written your description.
I call it 'jack in the box'. You can try to hang on, hang on, but the tension builds until boom.....
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

legsbestill
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Re: Improved symptoms - what now?

Postby legsbestill » Tue Jan 31, 2017 10:32 am

Do you mean that it builds and builds until you move? I mean does it go (temporarily) when you move? And then come on again? Are you saying that if you force yourself not to move it just never goes away? I will have to try forcing myself not to move just to check - it is so unpleasant I haven't done it in ages but my memory is that after maybe 30 seconds it builds to a crescendo and then goes away ... until the next one comes ...

legsbestill
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Re: Improved symptoms - what now?

Postby legsbestill » Tue Jan 31, 2017 10:36 am

I definitely recognize the jack-the-box description - that is exactly how I feel. It's how I measure how bad my symptoms are - how violent the resulting movement is. Recently I have just been moving my legs - not my whole body - and not quite as violently as previously.

Rustsmith
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Re: Improved symptoms - what now?

Postby Rustsmith » Tue Jan 31, 2017 2:44 pm

In the early days after my RLS turned severe and I still did not know what it was, I would occasionally try to resist the urges in the hope that they would go away. I very quickly learned that resistance was futile and that eventually my legs were going to move, with or without my cooperation. Maybe it was my unconscious mind saying enough is enough, but it always ended with a violent kick to relieve the "pressure" that was building in my nervous system. I will never again try that because one night I almost landed a roundhouse kick to my wife's head as she was returning to bed. The potential consequence of that still terrifies me.

As for jack-in-the-box, that definitely describes my symptoms on some bad nights. I will wake up and instantly fly out of bed to get into a standing position. I have always had low blood pressure, so this action has the very real potential of causing me to faint, but once again it is not something that I consciously do, so I have to quickly deal the situation that I have unconsciously put my RLS has put me into.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Improved symptoms - what now?

Postby badnights » Wed Feb 01, 2017 3:16 am

Do you mean that it builds and builds until you move? I mean does it go (temporarily) when you move? And then come on again? Are you saying that if you force yourself not to move it just never goes away? I will have to try forcing myself not to move just to check - it is so unpleasant I haven't done it in ages but my memory is that after maybe 30 seconds it builds to a crescendo and then goes away ... until the next one comes ...
Yes, exactly; it builds until I move (whether voluntarily or involuntarily). That's why I was surprised to read that it fades and returns with no movement on your part. I know mine doesn't fade, just keeps worsening, and I also know I have, like Steve, long since decided to never again try to ride it out.
Beth - Wishing you all restful sleep tonight
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Yankiwi
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Re: Improved symptoms - what now?

Postby Yankiwi » Wed Feb 01, 2017 7:38 am

Jack-in-the-box is a good description. I know I shouldn't try to ride it out, that it won't work and I'll have to get up and move to get it under control but sometimes I still try until it gets so bad I have to get up.

Polar Bear
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Re: Improved symptoms - what now?

Postby Polar Bear » Wed Feb 01, 2017 8:54 am

As soon as there's the first creepy feeling I start to wriggle my limbs, rotate my feet etc. i.e. movement - there is absolutely no sitting/lying still.
My Jack in the Box moment is when the wriggling isn't enough and I leap off my seat/bed.
( I use the word leap very loosely - I'm not exactly like a gazelle).
Trying to be 'still' while there are sensations, no matter how minor, just won't happen.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Re: Improved symptoms - what now?

Postby badnights » Thu Feb 02, 2017 9:20 am

Betty wrote:( I use the word leap very loosely - I'm not exactly like a gazelle).
:lol: :lol: :lol:
When I read that, it was totally involuntary but suddenly a sharp laugh burst out of me. I cut it off quickly because I have a guest in the house trying to sleep - but I think I must have woken her up :)
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Polar Bear
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Re: Improved symptoms - what now?

Postby Polar Bear » Thu Feb 02, 2017 8:09 pm

badnights - you've got to have a laugh now and again :clap: :clap:
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

legsbestill
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Re: Improved symptoms - what now?

Postby legsbestill » Thu Feb 02, 2017 10:40 pm

Yes the gazelle comment also made me laugh but with a degree of rueful recognition. I too perform the leaps - in a non-gazelle manner - from time to time.


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