New here and disgusted

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
ViewsAskew
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Postby ViewsAskew » Fri Jun 22, 2007 7:12 pm

I would want one, too. Sometimes, though, it seems to me that I have to be the first one to make a move. Maybe to say, "Dearest, I wanted to talk to you about what happened the other night. I want to understand it from your view; I also want you to understand how I felt and how much that interaction affected me."

That could be an opening to hear her perspective - show that you DO care about her perspective - but also to explain that you have feelings here in all of this, too. And, that you were hurt. She may not understand that. Or feel too embarrassed by her behavior to say so.

I don't know her. I don't know you. What I am suggesting is simply a possible way to go about it. It might not be how you interact with her.

I can understand the financial situation. In my last relationship (we were together 10 years), I couldn't afford a new one either. He moved into the guest room, I stayed in the master bedroom. It certainly didn't have to be the end of the relationship, but it turned out to be. How you manage that move is VERY important. For us, it became a separation of more than sleeping. It reduced our intimacy and we didn't work to maintain it. Again, that wasn't the reason we broke up, but it was the start. I didn't think something so minor could become such a huge wedge.
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.

Kirk
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Postby Kirk » Fri Jun 22, 2007 7:28 pm

That is some excellent advice and I sure appreciate it. We will sit down in the near future and talk about what she said, what I said etc.

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Postby Polar Bear » Sat Jun 23, 2007 9:05 am

Kirk, you mentioned the mattress. The Tempura mattresses are v. expensive, certainly here in UK, maybe £1,000 i.e. $2,000 upwards. I have ordered a memory foam mattress (and a topper for the spare bedroom) directly from the supplier. This supplier makes the foam for bed manufacturers. In the stores the memory foam mattress (everyday bed providers - not Tempura) is anything from $1,000 upwards, that was the cheapest we could see that had quality support, but online we got it for $600. I am sure it is poss to research a US supplier the same way.
Good luck with your sleep, Betty.

ViewsAskew
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Postby ViewsAskew » Sat Jun 23, 2007 5:13 pm

Good idea, Betty. Some of them are memory foam all the way through, but many are not. My friends got a whole mattress that had the memory foam on top and other foam on the bottom - instead of $2000 it cost $500 or something like that. At Costco, I've seen the toppers - 3 inches of memory foam, for $200 or $300.

Still, not cheap if the budget is tight. But, could be saved for and gotten relatively soon if there is a little wiggle room in the budget.
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
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Postby Polar Bear » Sun Jun 24, 2007 7:26 am

I'll let everyone know what I think of the memory foam, cos I am always pretty skeptical about these 'wonder things'. I won't have it until next Friday cos I have also ordered a mattress topper for the spare bed, which is not a standard size and that holds dispatch up by a day or so. I'm afraid that I like proof of everything so I'll let you all know in a couple of weeks.
Betty

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new here and disgusted

Postby ctravel12 » Sun Jun 24, 2007 3:18 pm

Hubby and I purchased a 3 inch memory foam pad from Costco and it cost us roughly around $300.00 and we have had it now for about 3 yrs and love it.

Kirk, I hope all is working out better between you and your wife and that you can both sit down and talk about it.

Keep us posted on how you both are doing
Charlene
Taking one day at a time

Kirk
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Postby Kirk » Mon Jun 25, 2007 11:27 am

My wife and I purchased a memory foam topper approximately 2 years ago to help with her back. This was a 3 inch topper purchased from Overstock.com. I believe the price was around $100.00 which is cheap. This has been a real saver for us. Her last back surgery was in the spring of 2001 and has been pretty much pain free except for some flare ups which occur when she does something that she is not suppose to. We are looking at new mattresses and are starting to save for the ones that limit movement. It will take a while, but we will get there. This weekend was pretty good for my RLS. I didn't have it quite so bad on Saturday and Last night.

upatnight
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Postby upatnight » Mon Jun 25, 2007 3:07 pm

I just joined this site this morning and I have never posted anything on this site before. Last night I was reading a posting on Yahoo Health by Dr. David Neubauer. He is doing research at Johns Hopkins on RLS. Anyway, he noted in his posting that bringing up the level of the chemical Dopamine is helpful in relieving the symptoms of RLS. I had been waiting for a very long time to write to someone who might take me seriously when I told them that my husband and I have found what is a sure cure for our RLS. We have sex, and that relieves it. I know I should not make reference to sex on this site, but Dr. Neubauer suggested I post on this site to let others know what they may try to see if it works. So there, I have. It works and never fails for us. We have suffered for years and this is it for us. If my posting is pulled from this site, I understand, but i just wanted a chance to finally say this and see if this can help some others out there. Besides, it is a wonderful way for couples to stay connected and supportive of each other. Since there are several positive chemicals given off when a couple has sex, then it may be a combination of all of them that seems to help my husband and me.

Just wanted to let folks know what to try. It certainly can't hurt at all.

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SquirmingSusan
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Postby SquirmingSusan » Mon Jun 25, 2007 3:15 pm

Upatnight, you're post is appropriate. Many people have found sex/orgasm to help relieve the symptoms of RLS. Some don't. If you search the forum, you'll find more posts on that subject.
Susan

doety
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talking

Postby doety » Mon Jun 25, 2007 7:52 pm

Welcome Kirk. I had a thought that might apply. Sometimes I wish when I had RLS I would just bleed all over the place -- that way, my dh or anyone could see that obviously something was wrong with me and might cut me some slack. But instead I stand, sit, etc. usually looking perfectly normal while inside I'm going out of my mind. But nobody else can tell. I know that at first, in this relationship, I was embarassed (our enemy) to talk about it. Then I got mad that he didn't understand. Finally, what I figured out was that I had to do lots of things to help him understand -- he happens to trust the "big names" -- so I got him the Mayo Clinic stuff, then he got on the foundation sight and even joined so he's on the mailing list. Then I had to keep talking, over and over, even when I thought surely he must know. We'd be in a car, I'd tell him I was having "legs" and he'd say "we'll come to a rest stop in 30 minutes." Then I would blow my top and try to explain that by that time one of us would be injured. Pretty much now, he just starts pulling over. When I walk out in the middle of a nice dinner out, we're both okay with it. We're lucky that we have a wonderful kingsized bed; certainly helps. Also, I often end up sleeping all over the house. My dh happens to have ADD, late diagnosed and let me tell you it's lots of trouble. When the situation gets weird, I have no problem with telling him what I've done for him over the years. I figure it's a mutual deal and sometimes he may need to be reminded. Obviously, exploding on someone isn't good, but I do hope you'll talk and tell her exactly how you feel. Spend some time explaining to her about RLS too, even if you've done that many times before. Talk about the sensations and the frustrations and the loss of sleep. Then -- my opinion of course -- I think it's okay to say that you're partners and kindness, tolerance and consideration has to work both ways.

becat
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Postby becat » Tue Jun 26, 2007 12:48 am

Oh Doety,
I've had the same thoughts, if anyone could just see what this feels like, we'd be better off.

No cuts, bruises, no crutches, or stitches........I totally agree. Someone without RLS can't understand and without something we could point to and say this is it........we sometimes get it more than we deserve, in the lack of empathy corner.

Your right about being embarrassed, as well. I have several calendars in use, but without a real feel for time ( I don't have a good sense of time, just seems like I'm always awake), I can't keep track of days, weeks, or months.

Makes me feel like a child. I would love to say, "I got over it", but I'm not. I'm embarrassed that I miss birthdays, lunch dates, show up on the wrong day or the wrong time to appts........but I do.

Thank you for your post, you said what I've said before, but forgot that it's still important to remember that we just don't function well without sleep.

Hugs to all,
Lynne

doety
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another thing

Postby doety » Tue Jun 26, 2007 1:15 am

Oh Lynne, I do the same thing. Doctor's appt? Oh, it was last week? Hair appointment? Not until tomorrow? I was driving to the store today and got lost -- it's been three nights since I've have more than 3 hours sleep. Kirk I don't mean to interrupt your thread, but it's still relevent. Even with the most understanding partner, they really don't know we've been up all night unless we tell them -- and of course I (and most of us) were raised not to whine. I have to try hard not to bite his head off.

Ann, I'm sure you'll read this -- so I'm still at 10 mg of Methadone and think it should probably be increased. Have an e-mail into the doc; he's not back until Friday. I am a zombie, cannot think, make decisions, or really even function. I am beside myself. Sorry to put this into the wrong place.

Kirk: be sure and tell us how the talk goes...you sound like a nice guy and I'm sure you married a nice lady, but she may just need to get educated. Or -- a whole 'nother possibility...could it be menopause? In that case, might want to rent a motel room, just for you.

ViewsAskew
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Postby ViewsAskew » Tue Jun 26, 2007 5:19 am

Doety, I find the Methadone does make me more zombie like than I would prefer. I am sorely tempted - sorely - to ask for that wake-em-up stuff (I have no brain, or I'd be able to find the name of it somewhere in the dark recesses of jumbled filing).

15 mg does keep the RLS at bay. Completely at least 85-90% of the time. But, it also takes me about 3-5 hours after I wake up to become functional. By 7 PM? I'm finally usually doing great. My mind is working pretty good, I'm awake, etc. I can maintain that until 3 or 4 AM most of the time, but try to go to sleep more like 12-1 AM. Usually make it more like 2-3 AM.

So, I'm wondering about the whole dopamine thing. I think that the circadian rhythm is still screwed up. I am hypothesizing that though the methadone takes away the RLS, we still don't have the dopamine at the right times, therefore we still want to be awake in the evening and go to sleep in the early morning.

So, what would happen if we took the tiniest amount of dopamine, maybe 4 or 5 days a week? That shouldn't make us augment (then again, I augmented in a week, so maybe not!) and maybe, just maybe, it would regulate the sleeping timing issues.

Very off track. . .sorry. . . . :?
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.

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SquirmingSusan
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Postby SquirmingSusan » Tue Jun 26, 2007 12:39 pm

Ann, I've thought about doing that tiny bit of dopamine thing too. I would be scared to death, though, after going through augmentation hell. But the Neupro patch (rotigotine) is supposed to be available in July for Parkinsons. It's not supposed to have the augmentation risk.

I don't feel like the methadone makes me dopey at all. It that my circadian rhythm is screwed up. I have an appointment with a new sleep clinic that treats insomnia very aggressively. I know someone who is on 2 benzos to knock him out at night and then takes something to wake himself up, followed by Provigil to keep him awake.

I put in a call to my primary doc begging for something reliable to knock me out - I'm taking Ativan for that purpose, followed by a Sleep MD, and it does the job, without daytime drowsiness the next day. But other sleep meds have left me almost narcoleptic in the daytime. I'm hoping for a good knock-me-out combo, followed by a good keep-me-awake-and-alert combo. My RLS is almost completely controlled now; it's the nighttime insomnia and the 6 naps I need to take all day!

Oh well, more off topic. :roll: Sorry Kirk.

It's off to Alpha Stim. It's been too long; it was helping with sleep so much.
Susan

razorbackmatt72
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I feel your pain

Postby razorbackmatt72 » Tue Jun 26, 2007 4:50 pm

I know exactly the situation you are in. I have had a horrible time finding something that will work. During the process, we have been sleeping in seperate bedrooms due to "my not taking care of the problem" They are a very light sleeper, but I got punished for something I have zero control over. I"m sorry that has happened to you, but you are not alone. I recently was given Mirapex, which for now is working like a charm except for the next morning hangovers, but we are back in the same bed again. I hope you find a solution that will work for you.

Matt


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