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?
moonlight
Posts: 672
Joined: Fri Nov 02, 2007 12:35 pm
Location: scotland

rls is a sad condition

Post by moonlight »

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

Chipmunk
Moderator
Posts: 655
Joined: Thu Mar 03, 2011 10:44 pm
Location: Madison, WI

Post by Chipmunk »

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

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

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

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

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.

Polar Bear
Moderator
Posts: 8798
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Post by Polar Bear »

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 :)
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

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

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
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Post by badnights »

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 - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
Moderator
Posts: 8798
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Post by Polar Bear »

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.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

moonlight
Posts: 672
Joined: Fri Nov 02, 2007 12:35 pm
Location: scotland

Post by moonlight »

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
sleep is not only a dream

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

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

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
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Post by badnights »

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 - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

janinindy
Posts: 1
Joined: Thu Sep 13, 2012 7:46 pm

Re: Nerved Up

Post by janinindy »

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.

Polar Bear
Moderator
Posts: 8798
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: rls is a sad condition

Post by Polar Bear »

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.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: rls is a sad condition

Post by badnights »

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 - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
Moderator
Posts: 8798
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: rls is a sad condition

Post by Polar Bear »

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. :(
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

majoraward
Posts: 274
Joined: Thu Oct 04, 2012 1:36 pm

Re: rls is a sad condition

Post by majoraward »

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.

Post Reply