rls is a sad condition

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
badnights
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Re: rls is a sad condition

Postby badnights » Sat Nov 03, 2012 12:19 am

I wonder what it is about the nearness of another body that sets us off. For me it's like I come wider and wider awake, as if that body near me is projecting some energizing radiation that disrupts my peace. It so totally sucks because touching and cuddling... well, you all know. How much we need it, dammit. And can't have it.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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ViewsAskew
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Re: rls is a sad condition

Postby ViewsAskew » Sat Nov 03, 2012 2:13 am

badnights wrote:I wonder what it is about the nearness of another body that sets us off. For me it's like I come wider and wider awake, as if that body near me is projecting some energizing radiation that disrupts my peace. It so totally sucks because touching and cuddling... well, you all know. How much we need it, dammit. And can't have it.


As I am having pre-WED*, I'm thinking it through. It's like an aura of energy surrounding every mllimeter of my skin. If you could take a picture and see it, I'd be glowing. It's a combination of anxiety, heightened mental awareness, and increased sensitivity to the skin. If anyone gets close to this space around me, it's as if they've touched me.

*The state of knowing that WED symptoms can and will start at any time in the near future - could be a couple of minutes, could be an hour or so. I often find myself squeezing and stretching muscles to ward it off and am hyperaware of my skin and all sensations.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

majoraward
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Re: rls is a sad condition

Postby majoraward » Sat Nov 03, 2012 5:54 am

The only known working solution in the universe is a vulcan mind meld from Mr. Spock sharing Kolinahr to purge all remaining vestigial emotion. Live long and prosper :crazy: Oh, but I forgot, Mr. Spock failed at Kolinahr so there is no solution to WED/RLS anti-space madness.

badnights
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Re: rls is a sad condition

Postby badnights » Sat Nov 03, 2012 7:48 pm

If anyone gets close to this space around me, it's as if they've touched me.
The concept of an aura of distressed personal space is very useful. If someone is in that space, I am unwillingly energized to alertness. A little different than how you experience it, but similar.

The only known working solution in the universe is a vulcan mind meld from Mr. Spock sharing Kolinahr to purge all remaining vestigial emotion
:D :lol:
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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Polar Bear
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Re: rls is a sad condition

Postby Polar Bear » Sat Nov 03, 2012 9:02 pm

I can so relate to the vision of an aura within which I am radiating energy.

So well put you guys :)
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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badnights
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Re: rls is a sad condition

Postby badnights » Sun Nov 04, 2012 2:11 am

This is interesting also becuase of the way I describe RLS to people who ask.
One of the things I say: it's as if my boundaries are diffuse, my arm does not end here (at my skin) but somewhere here (I pause to feel it, medicated or not, and I can I feel the edge of my arm -diffusing from flesh into nothingness- somewhere about two inches above my skin). Same with my legs.
Come to think of it, my hips too. My shoulder blades. Not my belly, it's right where it's supposed to be, so is my face.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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rthom
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Re: rls is a sad condition

Postby rthom » Tue Dec 04, 2012 7:36 pm

I absolutely can relate and agree with the ideas here and am now wondering if desensitation therapy would help with this--It's a huge problem for me here and sadley more for my wife. A couple of nights ago she sat at my feet talking to me and I got imediately crawley and very unomforable (understatement--but you guys know that) then she reached out and touched my arm and ithout warning I pulled it back fast and unconsciously. I was so upset for both of us--it must have been so hurtful for her and I couldn't control it (just a response not an intent). I so badley want to quit hurting her in these unintentional ways. hungh :-(
Still hoping for improvement maybe touch therapy eh? Any one tried this? To lessen the automatic responses or vibes?

Polar Bear
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Re: rls is a sad condition

Postby Polar Bear » Tue Dec 04, 2012 7:41 pm

rthom - I haven't heard of touch therapy.

It's good to hear from you again :)
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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ViewsAskew
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Re: rls is a sad condition

Postby ViewsAskew » Tue Dec 04, 2012 8:25 pm

Hmmmm - not sure, Randy, but an interesting idea. I am assuming you mean as you'd do with those with autism or deep touch such as massage? Or were you thinking something else?
Ann - Take what you need, leave the rest



Managing Your RLS



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.

rthom
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Re: rls is a sad condition

Postby rthom » Tue Dec 04, 2012 10:57 pm

that is exactly what I'm thinking of. :think:

badnights
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Re: rls is a sad condition

Postby badnights » Fri Dec 07, 2012 5:53 am

Well, I'm instantly negative and probably without reason. The only reason I have to be negative is that everything seems to work backwards for us - eg. relaxing CAUSES sensory agitation - so I assume that therapeutic touch would aggravate us too.

But thinking logically about it, instead of viscerally, why not? It might be worth a try. I wonder, if one were successfully de-sensitized, how long it would last? Might there be something we could do at home every night? or something....
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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rthom
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Re: rls is a sad condition

Postby rthom » Fri Dec 07, 2012 6:22 am

I figure it cn't get much worse..
All uphill from here--and the misss thinks it's a good plan but the problem is finding someone willing to try. :think:

ViewsAskew
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Re: rls is a sad condition

Postby ViewsAskew » Fri Dec 07, 2012 7:18 am

Many people benefit from deep massage - not light touch, but heavy touch. So, we already know that. That question is whether that would desensitize over time. My guess is not, but that's what you do - you make a guess (hypothesis) and then you see if you're right!
Ann - Take what you need, leave the rest



Managing Your RLS



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: rls is a sad condition

Postby badnights » Sat Dec 08, 2012 6:10 pm

OK, Randy, you're elected. Your wife will learn (or invent!!) de-sensitization massage and practice it on you. Let us know how it works!
jk :lol: If only it were that easy.
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

rthom
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Re: rls is a sad condition

Postby rthom » Sat Dec 08, 2012 7:25 pm

I have been trying to find someone for a while now to do it with me, but haven't found anyone who might.


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