What Severe RLS is Like

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

Postby EeFall » Mon Feb 27, 2017 4:53 pm

EeFall wrote:
debbluebird wrote:I remember well, when I couldn't take it anymore, just before I retired.


The first of July I will officially be retired from work and 1st of September I will get social security also. I have been very busy crunching numbers on spreadsheet and looking into finances and I think we will make it if we stay on a tight budget. Hopefully something will come up for healthcare or hopefully we will be healthy until we benone 65.

My sleep doc here is going to take over my suboxone prescription in June which makes me very happy. My doc back east could no longer fill it unless I went to see him every year. State and federal government is getting very uptight about who takes narcotics which suboxone is.

I am looking forward to retirement for sure and can't wait to sleep in lol. We have both started a diet and we will be exercising more too. After a while I may try to get totally off suboxone to see what happens, the only way I would know if I still need it.

By the way it appears I am healthy according to all the tests except for RLS of course.

ViewsAskew
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Re: What Severe RLS is Like

Postby ViewsAskew » Mon Feb 27, 2017 7:30 pm

YAY!
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

Postby Polar Bear » Mon Feb 27, 2017 11:01 pm

Whoop... whooop. whoooooooop. !!!
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

debbluebird
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Re: What Severe RLS is Like

Postby debbluebird » Fri Mar 03, 2017 3:18 am

I am so happy for you. We thought we would be on a very tight budget, but somehow it hasn't been that bad. We have adjusted.

badnights
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Re: What Severe RLS is Like

Postby badnights » Fri Mar 03, 2017 3:34 am

The relief must be great
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Sun Mar 05, 2017 4:09 am

debbluebird wrote:I am so happy for you. We thought we would be on a very tight budget, but somehow it hasn't been that bad. We have adjusted.


I hope it works out for us as it has for you guys. I worry a lot about retiring and my wife does too but not much choice. Looking forward to it mostly though for my RLS it will be a great relief.

SLEEPY ANGEL
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Re: What Severe RLS is Like

Postby SLEEPY ANGEL » Sun Mar 05, 2017 10:07 pm

For EeFall---
I've been retired for more than 15 years, but my retirement REALLY wasn't for health reasons (unless you want to say I would've gone insane if I continued with that boss!!!)... But I am thankful the RLS didn't start while I was working; I don't know how I wold have handled it since it was a sit-down job at a drafting table. And for sure the boss wouldn't have been happy if I stood up a lot or paced! AT THE CURRENT TIME my RLS is being handled fairly well by my meds (recently tweaked by the Neurologist). My BIGGEST worry is if/when I am too old or frail to be able to walk around much---- OR, if/when I need surgery for something in the future. Being laid up in a Hosp. bed would drive me nuts.... and the same goes for most of us. I'm hoping your retirement will go smoothly and you both stay healthy as best you can!

jerilyn
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Re: What Severe RLS is Like

Postby jerilyn » Mon Mar 06, 2017 6:42 am

Constantly moving your legs, bouncing your knees under your desk at work, having to find reasons to get up and walk many times throughout the day, trying to stay awake and productive at work when you've had little or no sleep and hoping you don't fall asleep at your desk, loving to travel but hating the fear that the RLS will make it nothing but misery, feeling like a fraud when having to ask for sickleave because your boss and co-workers and even the leave approval people probably think it is all in your head and you just want time off, feeling isolated at home and work and anywhere social because so many people just don't understand that RLS is not in my head, it is real and it is horrible and I wouldn't ever wish it on even my own worst enemy. And wondering most of all what quality of life you will have living with this disease. That is what severe RLS is like to me. I'm lucky because my spouse supports me and is even taking time off to help me through the DAWS withdrawal process I'm going through, but I haven't reached the worse of the DAWS yet, I still have those 10 days of no medicine looming over me. I fell embrassed and guilty having to ask for time off and wondering if my boss really thinks I have a problem.

Polar Bear
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Re: What Severe RLS is Like

Postby Polar Bear » Mon Mar 06, 2017 12:30 pm

jerilyn - everyone here will echo your post. It explains very well how we feel.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

SLEEPY ANGEL
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Re: What Severe RLS is Like

Postby SLEEPY ANGEL » Mon Mar 06, 2017 12:45 pm

jerilyn
....You have so clearly put into words what this disease is like, and exactly why I'm so grateful that it didn't start for ME until I had retired (quit because of the awful boss). I KNOW employers just don't "get it" so it becomes a real challenge to get your work done if the boss begins to think of firing you...and that would surely have happened to me if rls began back then. My heart goes out to you. Thankfully you have a supportive spouse! Even my closest friends don't seem to appreciate what rls is like, and I try not to talk about it all the time since it sounds like I'm "obsessing" about my health; but it really isn't out of my mind for good portions of the day.

Polar Bear
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Re: What Severe RLS is Like

Postby Polar Bear » Mon Mar 06, 2017 3:53 pm

I am very fortunate in that my friends are all very accepting of my symptoms which are 24/7.
I no longer even think of sitting squirming in any situation. Out to dinner, we go for a table in a corner or at least next to a wall. I sit next the wall and if I get uncomfortable, up I get, I just stand up and keep a bit of movement going. Possibly between courses I might take a brisk walk. Movies/theatre means an extra touch of medication to be very sure of being ahead but if necessary I make my way to a discreet corner somewhere, anyone caring to take a look at me I tell them I have a movement disorder.

Also my employer was wonderful, I stood at my desk when necessary. We set a long coffee table on top of the main desk for the keyboard/monitor, this coffee table fitted nicely underneath the desk when not needed. My boss also asked if there was any particular type of office chair that would be especially suitable for me.

I don't believe that my employer 'got it' but he did know that I suffered and wanted to do what he could to ease my suffering.

Agreed, that there's no point in talking about it too much with friends (unless they ask), even I would bore myself.... Once someone knows we have this disease so be it, I just do what is necessary to make myself as comfortable as possible without need for explanation.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

SLEEPY ANGEL
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Re: What Severe RLS is Like

Postby SLEEPY ANGEL » Mon Mar 06, 2017 5:21 pm

Polar Bear---
How fortunate to have a boss who wants to be helpful! At home I have places a wooden bench that is about 18 inches high on top of my desk where my laptop sits.... It's not too ba for the ability to stand up as I use my laptop, so I can wiggle and shift from one foot to the other, ETC. What you do in a restaurant and in a theater is similar to what I do. I guess we ALL will find what works for us. Thanks for your descriptions.

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Tue Mar 07, 2017 7:26 pm

SLEEPY ANGEL wrote:For EeFall---
I've been retired for more than 15 years, but my retirement REALLY wasn't for health reasons (unless you want to say I would've gone insane if I continued with that boss!!!)... But I am thankful the RLS didn't start while I was working; I don't know how I wold have handled it since it was a sit-down job at a drafting table. And for sure the boss wouldn't have been happy if I stood up a lot or paced! AT THE CURRENT TIME my RLS is being handled fairly well by my meds (recently tweaked by the Neurologist). My BIGGEST worry is if/when I am too old or frail to be able to walk around much---- OR, if/when I need surgery for something in the future. Being laid up in a Hosp. bed would drive me nuts.... and the same goes for most of us. I'm hoping your retirement will go smoothly and you both stay healthy as best you can!


Thanks for the note. Fortunately the Suboxone I take allows me to sit now as I sit at a desk most of the day, on computer most of day. Problem with it is it makes me grumpy and I try to stay away from people as much as possible. I just can't take arguing at all. I suspect it has more to do with the Mirapex I took for years and think somehow there was a permanent change to my emotional state, maybe just part of severe RLS I don't know but once I had a life before it got so bad 17 years ago. I hope with not working the stress level reduction will make me a happy camper again :)

EeFall
Posts: 1354
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Location: USA

Re: What Severe RLS is Like

Postby EeFall » Tue Mar 07, 2017 7:34 pm

jerilyn wrote:Constantly moving your legs, bouncing your knees under your desk at work, having to find reasons to get up and walk many times throughout the day, trying to stay awake and productive at work when you've had little or no sleep and hoping you don't fall asleep at your desk, loving to travel but hating the fear that the RLS will make it nothing but misery, feeling like a fraud when having to ask for sickleave because your boss and co-workers and even the leave approval people probably think it is all in your head and you just want time off, feeling isolated at home and work and anywhere social because so many people just don't understand that RLS is not in my head, it is real and it is horrible and I wouldn't ever wish it on even my own worst enemy. And wondering most of all what quality of life you will have living with this disease. That is what severe RLS is like to me. I'm lucky because my spouse supports me and is even taking time off to help me through the DAWS withdrawal process I'm going through, but I haven't reached the worse of the DAWS yet, I still have those 10 days of no medicine looming over me. I fell embrassed and guilty having to ask for time off and wondering if my boss really thinks I have a problem.


Even my 86 year old mother made a comment the other day that implied it was all in my head, I wish to god that it was as maybe there would be a cure. The last surgery I had they had to strap me down while I was out as I was moving around like crazy. I wouldn't wish this on anyone, you have a hard enough time having RLS and then people can't understand how it could affect your life.

SLEEPY ANGEL
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Joined: Fri Feb 10, 2017 4:34 pm

Re: What Severe RLS is Like

Postby SLEEPY ANGEL » Tue Mar 07, 2017 7:53 pm

EeFall---
It's so sad to hear you remark about how your Mom still didn't get it...still didn't realize this is a serious disease---
"Even my 86 year old mother made a comment the other day that implied it was all in my head, I wish to god that it was as maybe there would be a cure".
I don't know how to tell if using the QUOTE MARKS is working, so I just copy/pasted your sentences. How hard it is to convince those who don't experience what we experience that it IS REAL.

I know NOW that if I was scheduled for surgery, I would implore my Neurologist to EDUCATE the surgeon ahead of time. That probably wasn't an option back when you had the surgery you mentioned--- you maybe didn't have a good Neurologist or MOST LIKELY you had no idea the RLS would be there so severely as you came out of anesthesia. It is the nightmare that I dread might happen someday!


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