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?

rls is a sad condition

Postby moonlight » Wed Nov 09, 2011 8:47 pm

I'd love to cuddle my husband and let him touch me whenever but its impossible the rls seems to make my entire body actually hurt and feel like electric shocks and feels like my nerves are on fire when touched ,even the covers cause probs.
I feel sorry for hubby as it must be awful for him to be constantly pushed away...its having a big impact on our relationship as im sure he thinks I have no feelings for him, which is untrue...because of that I think rls is a sad condition that takes away the feelings we have ,want to show and want to feel.
I can let him touch me if i take codeine but its hellish for life to be like that.
sleep is not only a dream
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Postby Chipmunk » Wed Nov 09, 2011 10:36 pm

I'm sorry. :( I hope you can find something that helps soon.
Tracy

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Postby ViewsAskew » Wed Nov 09, 2011 11:41 pm

At times I feel tremendously sad about this. The impacts are in so many areas. I am grateful for the days/times when I can separate myself from it and not let it take control of my feelings.
Ann - Take what you need, leave the rest

Managing Your RLS

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Postby Polar Bear » Thu Nov 10, 2011 1:38 am

Yes, I can find the cuddles difficult sometimes, lying still and (supposedly cosy) until 'wham'.... I gotta jump up like a jack in the box.

I just try and make sure I am well medicated - not necessarily the reason the doc would have prescribed - but its all to do with the timing of taking the medication dose :)
http://www.willis-ekbom.org/about-rls-wed/publications
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Postby ViewsAskew » Thu Nov 10, 2011 1:46 am

Great point, PB. I do schedule my life around my meds! And, for the most, part, it works and I can do a lot that I couldn't do without them.
Ann - Take what you need, leave the rest

Managing Your RLS

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Postby badnights » Thu Nov 10, 2011 8:55 am

Does anyone else find that you can't stand being touched or sitting close even when your symptoms are under control? If we're sitting on the couch, I will touch him with one hand, but I don't like him to have his hands moving on me, and I can't stand cuddling. I want to, but I can't. It's not that I have to move, I just have to have space around me. I was not like that before. Am I alone here?
Beth
AUGMENTATION http://www.willis-ekbom.org/document.doc?id=2324
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Postby Polar Bear » Thu Nov 10, 2011 10:16 am

I'm ok as long as I am medicated.
But often I am not medicated quite enough. Its not the touch or the space, its the staying still.

As for sleep, I can't sleep face-to-face, need a clear pathway in front of my face.
http://www.willis-ekbom.org/about-rls-wed/publications
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Postby moonlight » Thu Nov 10, 2011 4:45 pm

I see am not really alone on this one.Beth your not alone I too must have my space at all times to the extent if i am out and people are too close I ask them to give me my space and as for people sitting against me eg in the bus i have to get up and move away, but this isnt due to the rls its cos of sexual abuse when I was growing up but believe it or not am about to start EMDR to get over that , apparently its never too late.
I still get acupuncture and find it still works but it takes time several weeks especially when the rls is bad like just now.
I find i have to take meds then go to bed get relief stretching out with no worried bout upsetting hubby.......then if i fall asleep great....but again hubby suffers whereas I'm glad to get the sleep!! then i get up later ...and hes asleep.
Sometimes it feels like were ships in the night
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Postby ViewsAskew » Thu Nov 10, 2011 6:28 pm

I'm OK with touch I know is coming. So if I initiate, it's usually OK.

But, I immediately pull back from any touch that is uninitiated, even when mediated. And, when the RLS is active, I wrap myself in several feet of protective space.
Ann - Take what you need, leave the rest

Managing Your RLS

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Postby badnights » Mon Nov 21, 2011 8:51 am

ok. Maybe my need for space is part of the RLS. Maybe not. Maybe it's an electro-repulsive force generated becasue my circuits are coiled adversely to other peoples? :? . At least I see other people have to deal with similar things, and maybe its RLS-y. Partly.

My friend said something to me today; moonlight your "ships in the night" commment made me think of it. I was sad because I was giving so little to the relationship, and I just *couldn't* give more,. I didn't have it in me to give, though I could see the need and I *wanted* to be able to give more. And he said, the solution is to find someone who accepts you for who you are, including being content with the amount you're able to give.

That's sort of a peaceful thing to think.
Maybe it's him, maybe not, but if I can't give any more than I'm giving, I need someone who can accept that small amount and be content with it. What a concept.
Beth
AUGMENTATION http://www.willis-ekbom.org/document.doc?id=2324
viewtopic.php?f=5&t=6532&p=61601#p61601
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Re: Nerved Up

Postby janinindy » Thu Nov 01, 2012 12:12 pm

When ever my RLS comes on, my mind becomes so agitated that I can't even think of responding to people. I have no pain, just a feeling that I'm going
to jump out of my skin. My husband now understands that its the condition, not him, but it is very bad and hate it. There isn't much you can do except
to get up an walk and take another dose of Mirapex or something stronger that the dr has given me. Good Luck to you and everyone controlling this
disease.
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Re: rls is a sad condition

Postby Polar Bear » Thu Nov 01, 2012 5:17 pm

I reckon that when symptoms are on the go in high gear, there is definitely such a big agitation that for me it is impossible to give full concentration to anything. And some things deserve your full attention :) Some things are impossible while doing laps of the bedroom.
http://www.willis-ekbom.org/about-rls-wed/publications
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Re: rls is a sad condition

Postby badnights » Fri Nov 02, 2012 6:56 am

It really bothers me that I can't sleep in the same bed as anyone, that I can't fall asleep after sex, that I have to take a pill to make me sleepy even when I'm exhausted, that I have to get up to put leg warmers and socks on just so I can lie still beside him a few moments longer. even medicated.
Beth
AUGMENTATION http://www.willis-ekbom.org/document.doc?id=2324
viewtopic.php?f=5&t=6532&p=61601#p61601
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Re: rls is a sad condition

Postby Polar Bear » Fri Nov 02, 2012 9:55 am

I also am wide awake after sex and lie closely for as long as I can but eventually I must get up.
I am fortunate that I can usually sleep (medicated) in the same bed although sometimes I have to go to another room for a while (and possibly sleep) and then come back to our own bed. Definitely I can sleep best in a bed on my own but certainly for the present that is not on the agenda except for a few hours, not for the whole night, and definitely no way as an all night permanent situation. And hopefully things will not reach a point where it would be necessary all of the time. :(
http://www.willis-ekbom.org/about-rls-wed/publications
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Re: rls is a sad condition

Postby majoraward » Fri Nov 02, 2012 6:28 pm

As a guy with RLS, let me respond (wow I noticed this thread was dormant for a year and now it has come back) to this.

My wife and I were married very young, I was 19, she was 18. This was over 37 years ago and there was no RLS. I remember back then and for many years after that we could, for an example, sit side by side on the couch holding hands and cuddling for hours while doing nothing, watching TV, or listening to music. It was (is) very enjoyable to be near the one I love. It has gone from that to this. We now have a 4 piece sectional couch (and it is just the 2 of us living here) that is in a U-shape. At one end is a recliner that I spend most of my time in and at the other end is a chaise lounge. My wife spends most of her time with me either on the chaise or on the next sectional over. In otherwords we are usually divided by at least one section of the couch, and often two. Sadly, my wife knows that she cannot sit next to me, not without making me get fidgety.

We have a king size bed, any smaller and we can't sleep together. In the old days (lol) we used to have a large waterbed without the modern day baffles, making us gravitate towards the middle, and we would usually sleep intertwined together in the center of the bed. No way that could happen now, I wouldn't be able to stand it. Medicines work for the most part by supressing the urge to move or dulling it, but if I were held down the medicines wouldn't be strong enough, and I guess it feels like I am being held down when we are holding each other which is absurd. I agree that RLS is a sad condition and my wife deserves better.
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