What Severe RLS is Like

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EeFall
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Re: What Severe RLS is Like

Post by EeFall »

Polar Bear wrote:Have a wonderful time - what age are your granddaughters?


They are 5 & 8 years old :D

badnights
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Re: What Severe RLS is Like

Post by badnights »

I also hope it will just go away :)
Apparently it happens, so why not you, me, any of us?
But as you said, the only way to tell is to reduce meds.
How much do you think the stress of working had to do with exacerbating symptoms? Not just the physical stress of not enough sleep, but the added burden of knowing that you were unable to work effectively because of the disease - unable to do what you felt you had to. That feeling makes huge mental stress.
Beth - Wishing you a restful sleep tonight
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Polar Bear
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Re: What Severe RLS is Like

Post by Polar Bear »

5 and 8 is a great age for fun.
One of our best ever cheapie entertainments has been the good old fashioned Ludo. :thumbup:
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
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Re: What Severe RLS is Like

Post by ViewsAskew »

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.

EeFall
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Re: What Severe RLS is Like

Post by EeFall »

Polar Bear wrote:5 and 8 is a great age for fun.
One of our best ever cheapie entertainments has been the good old fashioned Ludo. :thumbup:


Ludo?

My grandkids made 2 batches of slime with my wife lol. Invloves borax, elmers glue, water and kneeded it until it is slime. Yucky but fun I guess.

EeFall
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Re: What Severe RLS is Like

Post by EeFall »

badnights wrote:I also hope it will just go away :)
Apparently it happens, so why not you, me, any of us?
But as you said, the only way to tell is to reduce meds.
How much do you think the stress of working had to do with exacerbating symptoms? Not just the physical stress of not enough sleep, but the added burden of knowing that you were unable to work effectively because of the disease - unable to do what you felt you had to. That feeling makes huge mental stress.


7th day tomorrow and I have decided to half it again or 1 mg a day rather than original 4 mg on 8th day. The thing about my work as my life in general the last 18 years is that I have avoided people as much as possible. Between the RLS, lack of sleep, and all the meds like mirapex and the others I didn't trust myself around people as I would become angry about every little thing. Still the case. So work was not much fun. Often I would put on earbuds so I wouldn't have to interact with others. So really it was the stress of being afraid I would blowup and loose my job which did happen 3 times since 2001. Twice I quit and once I was fired.

Before having RLS my life was very different and I remember people saying I could get along with everyone or that they would say that I liked everyone. Which I suppose is still true, I realized that I hurt others very badly emotionally and to stay away so I wouldn't hurt them. I hope things get better.

ViewsAskew
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Re: What Severe RLS is Like

Post by ViewsAskew »

Hope they get better, too. I find that when I am terribly sleep deprived I also can get very short tempered. Not a good feeling, is it?

And, great news that you have cut back on the meds so much. Hope it continues.
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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Re: What Severe RLS is Like

Post by Polar Bear »

Ann, this is Ludo - though I paid less than half of the Amazon.com price.

Ludo
https://en.wikipedia.org/wiki/Ludo_(board_game)

https://www.amazon.com/TRADITIONAL-FAMI ... board+game
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
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Re: What Severe RLS is Like

Post by badnights »

That must have been dreadful to live with. And the self-imposed isolation would have made everything worse.

I think things will get better for you in retirement. For many reasons. One being that the constant strain is gone. But maybe also, because the disease is getting better :)
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

EeFall
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Re: What Severe RLS is Like

Post by EeFall »

badnights wrote:That must have been dreadful to live with. And the self-imposed isolation would have made everything worse.

I think things will get better for you in retirement. For many reasons. One being that the constant strain is gone. But maybe also, because the disease is getting better :)


It is better for sure. I am halving my meds again tomorrow I sure hope it works. Sounds like going below 2 mg may cause some serious withdrawal symptoms from I read online but we will see, crossing my fingers and hoping for the best.

EeFall
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Re: What Severe RLS is Like

Post by EeFall »

Polar Bear wrote:Ann, this is Ludo - though I paid less than half of the Amazon.com price.

Ludo
https://en.wikipedia.org/wiki/Ludo_(board_game)

https://www.amazon.com/TRADITIONAL-FAMI ... board+game


Interesting, I might get it for my granddaughters.

Polar Bear
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Re: What Severe RLS is Like

Post by Polar Bear »

EeFall - it is played with 4 tokens for each player. To keep the games shorter to start with you could consider using 3 tokens per person, maybe even 2 tokens. Just until the children get used to it.

I thought Ludo was a (children's) board game that you would all have been familiar with. I had it 60 years ago......
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
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Re: What Severe RLS is Like

Post by ViewsAskew »

In the US, kid's board games that have been around awhile might be Chutes and Ladders or Candyland. I remember seeing a Parcheesi set when i was a kid, but no one I knew was aware of the rules. Or Checkers!
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

Post by debbluebird »

EeFall wrote:It is better for sure. I am halving my meds again tomorrow I sure hope it works. Sounds like going below 2 mg may cause some serious withdrawal symptoms from I read online but we will see, crossing my fingers and hoping for the best.


Maybe there is something you could have on hand for the withdrawals, if they get bad ?

EeFall
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Re: What Severe RLS is Like

Post by EeFall »

debbluebird wrote:
EeFall wrote:It is better for sure. I am halving my meds again tomorrow I sure hope it works. Sounds like going below 2 mg may cause some serious withdrawal symptoms from I read online but we will see, crossing my fingers and hoping for the best.


Maybe there is something you could have on hand for the withdrawals, if they get bad ?


I have some ancient ambien that I kept, I looked up suboxone withdrawals the other day and several articles mentioned taking ambien to help.

Last night was a total fail however. I had all my sublingual sheets cut to size for a week for taking 1 mg a day but I take small doses 4 times a day. Last night I took the first small dose and an hour latter I woke up and my whole world was turmoil. I thought oh boy this isn't going to work so I will take the other half of dose. After an hour I couldn't stop moving so ended up taking 1/4 mg more and within a half hour I was asleep.

We have things going on and I am not prepared for the nightmare this will be trying to get off suboxone so I will continue taking 1/2 until I can set a date to try again. I don't know if it was RLS or withdrawals or both as the symptoms are much the same but apparently my body requires more of it. Maybe when I try again I can try splitting 1 mg into 3 parts, maybe that will work.

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