Riding the Big One (RLS 24/7, Hanging Ten)

For everything and anything else not covered in the other RLS/WED sections.
badnights
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby badnights » Fri May 20, 2016 9:37 am

I'm losing about a day per week as well. It's hellish. I work from 1 or 2 pm til 6, then start up again from home at midnight or thereabouts for another couple of hours. Sometimes I can't start by 2, though. Keep the countdown going, I guess.
Beth - Wishing you all restful sleep tonight
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EeFall
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby EeFall » Fri May 20, 2016 11:21 am

badnights wrote:I'm losing about a day per week as well. It's hellish. I work from 1 or 2 pm til 6, then start up again from home at midnight or thereabouts for another couple of hours. Sometimes I can't start by 2, though. Keep the countdown going, I guess.


Sorry to hear that. This night went from sleeping a half hour to restless to jerking around in bed to getting up and pacing the floor. I'm typing while pacing, just ran into a side of a wall lol, the hazards of RLS :)

It is as if I didn't take my suboxone but I did, I suspect the new sorbet we had this evening, I will have to check for aspartame.

Update: not the sorbet, I kind of wish it was cause it probably means my meds aren't working, oh well time will tell.

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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby EeFall » Fri May 20, 2016 5:47 pm

Ugh It is like having a hangover, having no sleep (without the prior fun of course). I'm trying to at least read a little, on tenth book of a science fiction series. The only way I can transport off this rock of rls, which is a good thing.

debbluebird
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby debbluebird » Fri May 20, 2016 9:55 pm

Sorry to hear of your difficulties. I accidentally had some aspartame in a smoothy someone gave me. Drank about 1/8 cup, then she says no sugar, but artificial sweetener. It was supposed to be a vegetable smoothy, so I didn't think to ask first. I had horrible RLS in my arms that evening. Got it stopped with 10 mg Methadone. Then the next morning in the car leg jerks. They usually start in the afternoon on the way home.

EeFall
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby EeFall » Sun May 22, 2016 5:25 am

debbluebird wrote:Sorry to hear of your difficulties. I accidentally had some aspartame in a smoothy someone gave me. Drank about 1/8 cup, then she says no sugar, but artificial sweetener. It was supposed to be a vegetable smoothy, so I didn't think to ask first. I had horrible RLS in my arms that evening. Got it stopped with 10 mg Methadone. Then the next morning in the car leg jerks. They usually start in the afternoon on the way home.


Yeah aspartame is terrible stuff. Alas it is happening again this evening. I don't believe I ate anything wrong I am scared to death, my Suboxone is not working. I don't understand it as I slept fairly well last night, it was the night before that was terrible. Also I noticed today that while I didn't believe I had to walk around thinking back today I seldom did sit down. I always wondered if this might happen as you know it has happened to all the other meds I have ever taken eventually.

debbluebird
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby debbluebird » Sun May 22, 2016 6:04 am

Maybe it's just a bad period. Hopefully it will get better soon. That happens to me all the time, up and down. Earlier this evening I couldn't sit down. Now I can. It's a crazy way to live, for sure.

badnights
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby badnights » Mon May 23, 2016 12:38 am

ditto - you know the disease has ups and downs. This might just be a down. There's reasons for the downs, but who know what they all are. There's got to be more to it than just what you ate and how well the meds are working. If you were a woman, time of the month would be a biggie. Didn't I read that guys have hormonal cycles too? maybe it's something like that, or some other bodily change that is not cyclic. Don't despair about the suboxone yet!
Beth - Wishing you all restful sleep tonight
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby EeFall » Fri Jun 10, 2016 2:13 am

I'm still kicking! Trying to hang on but I seem to be in turbulent seas lately. I wish life was like a box of chocolates Forest. :lol:

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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby ViewsAskew » Fri Jun 10, 2016 3:09 am

I just want to eat the box of chocolates, lol.
Ann - Take what you need, leave the rest

Managing Your RLS

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badnights
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby badnights » Wed Jun 15, 2016 6:38 am

Good to know you're still out there :)
Beth - Wishing you all restful sleep tonight
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby EeFall » Thu Jun 16, 2016 4:05 am

Yeah I'm the bad guy sometimes I wish I could get my hands on the funny guy who created me and smack him around, but then how do you hurt God? I wish I could have him live in my body for the last 16 years, I am just so angry and mean spirited. I have small moments of happiness and then I'm pacing the floor again hating this condition and the only one I can really blame isn't even a mortal being. I know there are worse ways to live or die but this is my special hell. So yeah I am in a bad mood, I am Mr Hyde, I'm zombie, and I am the living dead but can't turn into a bat, no I can't do that it would be too much fun.

debbluebird
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby debbluebird » Thu Jun 16, 2016 4:30 am

I totally feel your pain. I've been a zombie for the last month along with Ann and I'm sure others. Now my husband and I are even fighting about my temperament lately.

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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby EeFall » Thu Jun 16, 2016 4:50 am

debbluebird wrote:I totally feel your pain. I've been a zombie for the last month along with Ann and I'm sure others. Now my husband and I are even fighting about my temperament lately.


I knew I shouldn't have worked 2 Saturday's in a row it has really messed me up. Just not enough time to rest at home and I shouldn't had to take the pressure of deadlines it just makes me even more grumpy.

I think maybe I will sleep in my recliner tonight,it seems to help. When I realized I couldn't quit moving in bed I got up and had gluten free cinimon Chex cereal with a banana sliced in, coconut sugar, sugar and a sweet n low. Weird graving but I have heard others on here mention doing similar it actually seems to help, otherwise I would be pacing.

I hope you guys are doing well, it is a separate type of hell getting off the drugs they put us on. I just wished they would not stop working. The other thing that bothers me is the very loud tinnitus that I have now, I can never have silence and it would drive me mad if I dwelled on it. Very odd life indeed.

stjohnh
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby stjohnh » Thu Jun 16, 2016 3:22 pm

EeFall wrote:
debbluebird wrote:I totally feel your pain. I've been a zombie for the last month along with Ann and I'm sure others. Now my husband and I are even fighting about my temperament lately.


...The other thing that bothers me is the very loud tinnitus that I have now, I can never have silence and it would drive me mad if I dwelled on it. Very odd life indeed.


Age-related tinnitus is extremely common. It is initially very annoying to almost everyone, however after a year or two the brain usually accommodates so that even though the tinnitus is is still present, it is not noticeable except when you concentrate on it. The simplest solution if you have trouble sleeping because of tinnitus is to turn on a fan on low for a white noise generator.
Blessings,
Holland

EeFall
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby EeFall » Fri Jun 17, 2016 4:50 pm

stjohnh wrote:
EeFall wrote:
debbluebird wrote:I totally feel your pain. I've been a zombie for the last month along with Ann and I'm sure others. Now my husband and I are even fighting about my temperament lately.


...The other thing that bothers me is the very loud tinnitus that I have now, I can never have silence and it would drive me mad if I dwelled on it. Very odd life indeed.


Age-related tinnitus is extremely common. It is initially very annoying to almost everyone, however after a year or two the brain usually accommodates so that even though the tinnitus is is still present, it is not noticeable except when you concentrate on it. The simplest solution if you have trouble sleeping because of tinnitus is to turn on a fan on low for a white noise generator.


Thanks for info, it doesn't interfere with my sleeping, waking hours it bugs me. I do have a white noise generator app on my phone that mimics noises like a fan, even as a passenger on a jet aircraft. Mine has gotten progressively worse over the years. I thought it had to do with over 30 years of listening to music on earbuds, probably does some but then I found my father had it starting in his 40's and he never listened to loud music like that. My imagination has always worked overtime and my brain turns it into different sounds all the time and like stereo it is different in each ear. I mostly miss the total quiet.


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