What Severe RLS is Like

[debbluebird]

Great news !

[Rlstader]

EeFall, I too have severe refractory RLS. Augmented from the dopamine agonists after 10 years. Have been working with my amazing doc and after many months of trying different drugs and dosing regimenes I am now doing very well on extended release oxyicontin 10 mg one at 11 a.m. and one at 10 p.m. I have gotten used to it and don't feel tired or drugged or foggy. Certainly this is not ideal and I worry about addiction every day but I had no choice. I could not live without my drugs. They do help immensely. There is a big difference between the regular and the extended. I'm told because the drug is long acting you don't get the "rush" or "high" feeling and I don't. If you are desparate I would suggest giving it a try. I work everyday. Good luck. I hope it helps to know that there are lots of us out there that understand and empathize with you. Hang in there!

[EeFall]

Life is short and life is weird, I have lived longer, but I am younge all the same. I know what extremely long life is. I live it everyday but what this has done to me is as something as from a sconce fiction horror story. How old am I? I meant an old frien who I knew 50 years ago the other day and he thought it almost a dream that I had not aged, yet he was younger than me. I am old, very old, but they don't see it. I think maybe this disease is also a terrifying blessing as it robs me in many areas as friendship yet I continue an live more. It scares me. How long will it continue? Longevity with this condition is torture. I'm as healthy as an ox or so the saying goes except I'm not. Probably something about this disease gives extended life and I don't know if it is a good thing or an extra curse. It is laughable

[badnights]

Probably something about this disease gives extended life and I don't know if it is a good thing or an extra curse. It is laughable

It's like when you haven't slept more than 2 hours a night for two weeks and you're still functioning at work. No one even notices, except you, because you know you're not up to snuff. But no one else even notices. If they went without sleep for two days, let alone had broken 2-6 hours a night for years and years, they would be dead or basket cases. OK, we're basket case in many ways, but the level of functioning we achieve with such immense sleep loss is amazing. That's the reverse side of the hyper-alertness coin. And like you said, I'm not sure if it's a blessing or a curse.

[Polar Bear]

Probably something about this disease gives extended life and I don't know if it is a good thing or an extra curse. It is laughable

It's like when you haven't slept more than 2 hours a night for two weeks and you're still functioning at work. No one even notices, except you, because you know you're not up to snuff. But no one else even notices. If they went without sleep for two days, let alone had broken 2-6 hours a night for years and years, they would be dead or basket cases. OK, we're basket case in many ways, but the level of functioning we achieve with such immense sleep loss is amazing. That's the reverse side of the hyper-alertness coin. And like you said, I'm not sure if it's a blessing or a curse.

I could have written this post. I regularly worked full time 9 - 5 without having slept, or perhaps having slept for 2 or 3 hours..... night after night/ day after day/ week after week.. I was also driving to and from work which in retrospect wasn't a good idea !!
I functioned, no idea how it was possible.
A functioning basket case is a pretty apt description. Many many days I was in a fog and hanging on to real time by the skin of my teeth.

A curse or a blessing - I guess it's a bit of both.

[debbluebird]

The last year I worked, I really shouldn't have. At the end, I found that my memory had been affected. I could not continue working.

[EeFall]

It is at least nice that I can come and blow off steam and you guys actually know what I am talking about! Also I can't seem to stay on just who I am, sort of a crazed hidden creature looking out at the world of normal people who I can't really explain just what is going on as they don't believe, can't believe, won't believe that it is possible to live like this. It is getting difficult to remember a quarter of my life ago I could live fairly normal. Now I work to live and don't make plans to do much. Thankfully I am able to read and I read often. At least Suboxone allows me that unless I have a few bad days and go into zombie mode. 9 more or 17 more months and I can retire. I just hope the med continues to work.

[badnights]

Most people have to really care about you before they're willing to imagine what RLS/WED is like. The imagining, if done well, is painful, and people shy away from pain. I wish I wish I wish more people would make the effort, though. It's hard ....

I think once you retire, eefall, a huge amount of stress will be removed, not least because you will be free to sleep whatever hours your body allows you. Life should become much better.

I have this wonderful accommodation at work whereby I can work afternoons and evenings instead of normal hours, and it has made a huge difference. I've been able to keep working full time, instead of dropping to part time like I thought I would have to do. I think you've looked into every possible option available to you, it;s a crying shame some companies can't be more flexible.

[EeFall]

Most people have to really care about you before they're willing to imagine what RLS/WED is like. The imagining, if done well, is painful, and people shy away from pain. I wish I wish I wish more people would make the effort, though. It's hard ....

I think once you retire, eefall, a huge amount of stress will be removed, not least because you will be free to sleep whatever hours your body allows you. Life should become much better.

I have this wonderful accommodation at work whereby I can work afternoons and evenings instead of normal hours, and it has made a huge difference. I've been able to keep working full time, instead of dropping to part time like I thought I would have to do. I think you've looked into every possible option available to you, it;s a crying shame some companies can't be more flexible.

Wow that is neat to be able to work other than normal hours. Most of the people I work with actually work from 5 am to 1:30 pm. I was working 7 am to 3:30 pm but recently changed to 6 am to 2:30 pm. It is not flexible though. Once you pick when you are coming in they make you stick to it. The reason that people work so early here is because of traffic, we have lots of it. Surprisingly, even leaving for work at about 5:15 am the traffic seems to be increasing. I took an intermittent leave day today (and I don't get paid for it), but if I have a bad night I'm not driving.

Work is stressful. It is not like I can say hey I'm on opioids and my brain may not be working to its full potential, and oh yeah, it like makes me a little crazy and grumpy. When people at work complain about their lack of sleep the night before I tend to put my earbuds on and listen to music It doesn't help my tinnitus but it does wonders for my peace of mind.

[Polar Bear]

We are definitely climbing a hill to just appear 'normal'.
Or even 'nearly normal'.
On the other hand - what is normal ?
Getting through a day's work is a pretty good achievement.

[stjohnh]

One of the "rules of life" of mine is:
EVERYONE IS NORMAL UNTIL YOU GET TO KNOW THEM.

[Polar Bear]

I agree stjohnh..... Another saying.... Everyone is odd but you and me, and even you are a wee bit odd..

[EeFall]

The odd thing about normal is that my normal changed about 16 years ago so I can look back and then forward to the present and think, you are one weird dude

Awhile back when I was having trouble getting the Suboxone (ended up paying for it myself) but my doctor told my wife (I had my wife call the doctor because, frankly, I could not cope with the situation) he was going to send me something to hold me over (if he could figure out just what that would be) he never sent anything. There really is nothing left but Suboxone for me (and it causes me hyper-alertness, itching, sweats, terrible headaches, and I wonder if my tinnitus may also be because of it).

I was never an extrovert, but after RLS became crazy where I couldn't even sit down without meds, I realized that I was often depressed and angry or took what people said as personal and hurtful (meds make it even worse) and it wouldn't be a good thing to interact with people, especially talking about anything confrontational because I would become unglued An example: Last night I started a shouting match with my wife (she was never one to back down from an argument, and I suppose it is one thing I like about her), but we went to bed not talking.

We made up this morning but in the past stuff like that would roll off of me like water on a duck and we would be back to normal in moments. Now I feel like the end of the world is coming and I can't hardly stand it. It is like I have no shielding from being hurt so I avoid the possibility by avoiding people. If that happens with even my wife I think I am doing the correct thing by avoiding others. It wasn't like that until RLS got so bad.

The blessings are that I can sleep, I can work, and I can do a few things like work in the garden, go out to eat, see a movie, and I can sit here and type this I miss people though and I miss planning vacations, planning anything really (as I never know how things are going to be with my RLS). My wife mentions that once in awhile when I talk about going on a trip or doing something that I did before RLS, she realizes that my life is day by day and it would be horrible to be half way across the country or the world and then suddenly I can't sleep and spiral down into zombie mode. But we can just do what we can and live as much as we can with the limits we have. I suppose that is true for most people, although the lucky one's have few limits to hinder them from doing what they may.

[debbluebird]

I wonder if you could go back to Methadone, after being off it for so long ? Of course I wouldn't try this until you have retired. I was off for two months and I am now taking less than I did before. Of course when I tried to go back on gabapentin and Mirapex, it was awful. I just can't them anymore.

[EeFall]

I wonder if you could go back to Methadone, after being off it for so long ? Of course I wouldn't try this until you have retired. I was off for two months and I am now taking less than I did before. Of course when I tried to go back on gabapentin and Mirapex, it was awful. I just can't them anymore.

When they got me off methadone I was also taking 4 other things and all 5 together we're not working. Even taking all that I was beginning to have many nights again of pacing all night without sleep.

It all stopped working that is why 3 sleep doctors each said that I was "at the end of the road". Now I have a constant headache that never goes away, the Suboxne makes me itch terrible at night, plus it seems to be making me an emotional wreak, also the hyper-alertness still happens some. If there was any thing else to take that still works I'd be taking it. Yet despite all the side effects I am so thankful that it works at all.

It is dragging me down though and can just hope RLS will go away or a cure will be found. I am so tired of this.