What Severe RLS is Like

For everything and anything else not covered in the other RLS/WED sections.
Polar Bear
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Re: What Severe RLS is Like

Postby Polar Bear » Thu Oct 12, 2017 11:47 am

ViewsAskew wrote: I have no symptoms some nights and 30 minutes sleep others. No idea why so inconsistent...but, you all understand.


Indeed we do understand - it's one thing being up all hours with insomnia - and quite another matter when it's because symptoms just won't give over !!
I know which I prefer.
Betty
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EeFall
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Re: What Severe RLS is Like

Postby EeFall » Thu Oct 26, 2017 7:13 am

Acesulfame potassium Is not my friend for RLS. I have known for years that aspartame nullified any medicine I took for RLS but I have discovered that acesulfame potassium Is just as bad for me. Like aspartame it is in many kinds of food products. We have used Da Vinci sugar free syrups for dieting for years and have had no problems with sucralose which it contains but also we would purchase Torani Sugar Free Syrup once in awhile and the product usually was on same shelf. Torani contains sucralose but in addition it contains acesulfame potassium which we both missed as we assumed (yikes) they used the same sweetener.

We had a dozen different bottles of this for flavoring like root beer, vanilla, and even a pancake syrup flavor. Five of the bottles were Torani. Lately I have been having nights as if I had not even taken my meds, even during the day. I mentioned to my wife that the only thing that would do that was Equal or NutraSweet which is aspartame in America. We started going through everything and found Torani contained acesulfame potassium also. We started experimenting and found that it was the acesulfame potassium. It is also in Hershey’s sugar free syrup which I have also stopped having.

So it is good that we found out what the problem was but dang it, it is in many low sugar type products and another thing to be on the lookout for in my diet. I’m up late tonight and realized my wife had put the Hershey’s on my ice cream after dinner. The Torani we threw out but forgot about the other.

debbluebird
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Re: What Severe RLS is Like

Postby debbluebird » Thu Oct 26, 2017 8:12 am

We have stopped all sugar types and artificial sugars. I think there are at least 25 names for sugar. Then I don't know how many additives there are. It has made a difference in our weight and how we feel. My husband has reversed his diabetes. No longer takes meds for it. Blood sugars are normal. I did it because, if I have any sugar in my system, then I am hungry all the time.
That being said, we do use stevia, my husband more than me. When I want something sweet, I eat a date and a few nuts. We make smoothies with berries, cold enough, that it is ice cream consistantcy. That takes care of my ice cream craving. Over time our tastes have changed.
Glad you figured it out.

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Fri Oct 27, 2017 8:38 am

debbluebird wrote:We have stopped all sugar types and artificial sugars. I think there are at least 25 names for sugar. Then I don't know how many additives there are. It has made a difference in our weight and how we feel. My husband has reversed his diabetes. No longer takes meds for it. Blood sugars are normal. I did it because, if I have any sugar in my system, then I am hungry all the time.
That being said, we do use stevia, my husband more than me. When I want something sweet, I eat a date and a few nuts. We make smoothies with berries, cold enough, that it is ice cream consistantcy. That takes care of my ice cream craving. Over time our tastes have changed.
Glad you figured it out.


We still use sweet n low, wish we could stop but we gotta have coffee. Dang it is 1:30 am and I’m not sleeping today. 2 mg suboxone not working nor taking a little more. Just took 9 grams of Kratom, have to do something. Night before was only few hours sleep. I may go back to 4 mg suboxone today. Will have to think about it. Down 37 lbs, a little good news.

debbluebird
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Re: What Severe RLS is Like

Postby debbluebird » Sat Oct 28, 2017 2:58 am

We use stevia.
Hopefully it will be better tonight.

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Sat Oct 28, 2017 6:05 pm

debbluebird wrote:We use stevia.
Hopefully it will be better tonight.


Looks like 2 1/3 mg of suboxone works almost 8 hours sleep last night :D

ViewsAskew
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Re: What Severe RLS is Like

Postby ViewsAskew » Sat Oct 28, 2017 8:00 pm

EeFall wrote:
debbluebird wrote:We use stevia.
Hopefully it will be better tonight.


Looks like 2 1/3 mg of suboxone works almost 8 hours sleep last night :D


Wonderful! That is much better than before. I, personally, am thrilled with any incremental changes that reduce meds and cost.
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.

debbluebird
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Re: What Severe RLS is Like

Postby debbluebird » Sat Oct 28, 2017 8:48 pm

Good news!

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Thu Nov 09, 2017 1:47 pm

The last week I raised suboxone to 3 mg and I am doing much better. Oh well.

debbluebird
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Re: What Severe RLS is Like

Postby debbluebird » Thu Nov 09, 2017 3:26 pm

It's always up and down for me too.

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Sat Nov 11, 2017 6:24 pm

debbluebird wrote:It's always up and down for me too.


I am now down 40 pounds and one pound to next goal. Yikes. I have found I am almost addicted to going out into the lawn and garden to work which is the main reason besides Atkin's diet that I have reached 40 pounds since retiring from work. Speaking of up and downs while the Suboxone is working the best it can at using 3mg a day rather than 2mg or 4mg my mood swings are really high. I suspect it is the Suboxone but don't know for sure. Of course getting 7 or 8 hours sleep doesn't mean it is terrific sleep with RLS. I am just glad that I seem to be getting up only one time at night now.

I need to kick myself and start doing something rather than working out in the yard and feeding our wild birds and hummingbirds. Now that I am retired I realize I was really a workaholic. I need to start doing artwork again, so far nothing much has interested me though although...

I have been thinking of doing a strange art project. In Exodus 33:20 in bible it states that Moses wanted to see God. God basically tells Moses that he would die if he saw God from the front but will place Moses in a cleft in a rock and God would cover the entrance with his hand as he walked by so that he would remove his hand as he passed by so Moses would only see his backside.

So then I was thinking that if a mans hand is about 5 inches wide and could cover about a 6 foot man in a crack then 72/5=14.4 X 72 = 1036.8/12=86.4 feet or roughly in that instance God would be around 86 feet tall to have the width of a hand that would be able to cover Moses as he walked by. Then I'm thinking why would it kill a human to see God. Anyway I was thinking of drawing this and maybe sculpting it from several different perspectives. I loathe doing anything that is too easy but this seems almost too difficult. At least it will keep me busy I suppose.

badnights
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Re: What Severe RLS is Like

Postby badnights » Sun Nov 12, 2017 7:47 pm

Anyway I was thinking of drawing this and maybe sculpting it from several different perspectives. I loathe doing anything that is too easy but this seems almost too difficult. At least it will keep me busy I suppose.
That's a crazy-good idea. I have no clue how you'd do the sculpture, but what a challenge! Wow.

I do think you shouldn't be too appalled with how much time you're spending in yard and garden. That sort of work has such a beneficial effect on mental and physical health. It allows you to enter what is basically a meditative state, almost effortlessly. Putting your brain in wine-and-dine mode (or should I say weed-and-seed mode) vs. fight=the=tiger mode for some amount of time every day should have profound and beneficial physiological consequences - it might have a lot to do with how much better you're sleeping.
Beth - Wishing you all restful sleep tonight
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debbluebird
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Re: What Severe RLS is Like

Postby debbluebird » Mon Nov 13, 2017 4:00 am

You are retired now, and can do what you want, when you want.

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Tue Nov 14, 2017 5:42 am

badnights wrote:
I do think you shouldn't be too appalled with how much time you're spending in yard and garden. That sort of work has such a beneficial effect on mental and physical health. It allows you to enter what is basically a meditative state, almost effortlessly. Putting your brain in wine-and-dine mode (or should I say weed-and-seed mode) vs. fight=the=tiger mode for some amount of time every day should have profound and beneficial physiological consequences - it might have a lot to do with how much better you're sleeping.


I have been reading loads of library ebooks on my smart phone and I finally figured out I can download audio mp3 books from the library too. I listen to these books while working outside and the time flies by. Audio books have come a long way from the ones I tried years ago. Like the book I am reading now practically every character has a different voice and they do an incredible job reading as if they are actors. Plus it lets you speed up the reading of the book up to twice speed although I usually do 1.25x or normal.

I imagine many younger people must use it a lot. I had also found it handy to wear my wireless ear buds and listen to a book while my wife watch’s General Hospital or something else I don’t care to watch. I do enjoy working outside, I just didn’t think before I retired that it would work out that way but it is very relaxing despite physical exertion. I slept 7 hours 45 minutes last night and that about sums it up :)

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Tue Nov 14, 2017 6:16 am

I am going to start soon on my art project about Exodus 33:20. Actually have been thinking it through. 40 is used much in bible and I was thinking to place Moses in the rock about 40 feet up and so that would be about half the height as if a 80 foot man were striding by and his hand would cover the creak. I am going to make several images so that it is like stills in a film and hang on a wall so that as one walks by the images progress. It will be like you are staring out from Moses eyes looking out the cleft. The first image will show the landscape through the crack then progression of the hand covering the crack. Maybe a partial of the hand retreating and then just the view of God from backside as he walks by. It will also involve normal light at the beginning and a shadowed light when the hand comes then a bright light afterwards. I think there will be a rainbow effect.

The sculpture will be difficult because I won’t show view from front. It would be hung on Wall not like a sculpture you can walk around. It also would be at least 3 pieces. I might be able to combine painting and sculpture also. I am also thinking of eventually trying to do this in 3D Virtual Reality. There is beginning to be a lot of 3D VR art on the internet but never had a good enough idea before to want to take the trouble to learn how to do it. This project should keep me busy for years :D


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