sleep issues

Post by **badnights** » Sat Jun 18, 2011 6:03 am

I wish your lovely doctor would go without sleep for 6 months or so. Then I bet he would bust his butt finding something that worked for you. I don't think he GETS that you're not sleeping !!

Post by **ViewsAskew** » Sat Jun 18, 2011 11:18 am

I saw this earlier and couldn't respond without profanity :twisted:

You're lucky to have him in many ways....but why, oh why, do so many of us have to fight for what should be easy decisions? And, why, oh why, do so many people and doctors not "get" what it's like to have disrupted and fragmented sleep, night after night, week after week, often for months or years at a time?

Post by **Chipmunk** » Sat Jun 18, 2011 1:05 pm

Melatonin made my WED/RLS worse. I took it for 2-3 weeks, then stopped, then started again a couple weeks later. Yep, it was definitely the melatonin.

I was sorely disappointed as I also have a sleep-phase disorder and so was hoping this might help my body get on an earlier schedule. But I am 90% sure the melatonin makes things noticeably worse.

Post by **Polar Bear** » Sat Jun 18, 2011 4:56 pm

Tracy: I do understand that there is a chance that melatonin will affect wed/rls but that the chance is quite low.

Badnights/Views: Last night I took 3.75 Zopiclone and the 2mg Circadin SR/melatonin as my doc suggests and slept from 3.3am to 8am. That actually wasn't too bad, but I wonder how much residual there would still be from the 7.5mg Z that I was taking up until yesterday.

Yes, I was disappointed that he didn't follow Dr B's suggestion but don't want to alienate him as he generally is pretty helpful. So I shall follow his 'yellow brick road' and see where it takes me.

Fear not, if my doc's way leaves me worse off than I was as regards sleep, I shall be in his surgery and will be whatever type of drama queen I need to be .... short of needing to be certified.

Post by **badnights** » Sat Jun 18, 2011 7:58 pm

That's the attitude, Betty, he just has to realize that just because you can manage to put a good face on it doesn't mean your life is acceptable the way it is. --hugs--

Post by **ViewsAskew** » Sat Jun 18, 2011 10:33 pm

badnights wrote:That's the attitude, Betty, he just has to realize that just because you can manage to put a good face on it doesn't mean your life is acceptable the way it is. --hugs--

I often think that this is the bane of RLS and us. We often look like we're in pretty good shape. I often seem alert and functional on the outside, yet rarely feel it inside. It's the "But, you don't look sick" part of this.

Post by **Polar Bear** » Sat Jun 18, 2011 11:45 pm

Badnights/Views: You are so right. We look ok!!! But most of the time I feel wiped/wrecked/weary/not alert and generally unwell with aches and pains and side effects of the different medications and lack of sleep and lack of being just able to relax. Perhaps it is a trait of character not being able to relax, and perhaps it is wed/rls, or a mix of both. Chicken and egg....

Ann said recently that she is tired of being tired. That could be our slogan.

When I have breakthrough and hubby says 'are your legs away with it' I feel I'm just fed up with the boring unceasing pattern of always having something wrong with me. And I feel that I must be boring ..... rls has taken over my life.

Okay, vent over

Andreadrea · Post by **Andreadrea** » Sun Jun 19, 2011 12:14 am

Vents are OK

When my WED/RLS flares up, it consumes every part of my life and my thoughts. I fear that am boring the people in my life as well.

Post by **ViewsAskew** » Sun Jun 19, 2011 12:24 am

It's exactly the same for me.

Post by **Polar Bear** » Sun Jun 19, 2011 4:03 am

Last June becasue of Giant Cell Artritis I was prescribed perdnisone 50mg. This has been slowly reduced to 4 mg daily and was a saviour. However prednisone has sooooo... many side effects. Because it is so hard on the tummy and because when on a steroid you also have to take aspirin, my stomach has been playing up. To the point where twice I have been to ER, done the treadmill et al, because it was thought I might be have had a heart attack. The pain was as severe as that.

Because of this pain I was put on omeprazole.
This did not work.
3 days ago I was prescribed Lansoprazole.

I fell asleep tonight at 3am. I awoke at 4.30am clawing my skin. Red weals over my body and legs. Got up and now half an hour later it appears to be calming somewhat.

And I haven't even had any relief from the Lansoprazole which appears to take up to 2 weeks to become effective.

I am assuming this rash/itch is the Lansoprazole (which I take morning and evening).

Something else to interfere with sleep.

So when I am asked, How Did you Sleep Last Night....... Hmm well actually I came out in a rash etc. etc.
Something else to be boring with....

Okay.... I'll go back to bed now.... hope this rash has calmed and try for some sleep.

Post by **ViewsAskew** » Sun Jun 19, 2011 5:26 am

How awful, Betty. Hope it goes away soon.

Post by **badnights** » Sun Jun 19, 2011 6:19 am

So many things in this thread strike home: Tired of being tired. But you look well. Sorry I'm talking about my medical issues again but there doesn't seem to be anything else in my life. Etc.

At least we have each other to rant to.

cornelia · Post by **cornelia** » Sun Jun 19, 2011 10:26 am

I fully agree with all these rants and can add a few, but, I'm too tired.

I would love to hear stories from severe patients who can honestly say that they have fully accepted this disease and it's impact; that they are still quite happy and never think that life is useless as it is. But, I think they just don't exist, or am I too pessimistic?

Anyway: it's lovely to vent from time to time.

Corrie

Post by **Polar Bear** » Sun Jun 19, 2011 11:46 am

The rash and the weals calmed down and I got to sleep, using my ipod and an audio book.
Remains to be seen if they appear again.

I think I have accepted the wek/rls ok and I don't think that life is useless, but it definitely is damned hard and frustrating.

yes, thank goodness we have each other who understand, who know exactly what we mean.

Post by **ViewsAskew** » Sun Jun 19, 2011 6:36 pm

cornelia wrote:I fully agree with all these rants and can add a few, but, I'm too tired.

I would love to hear stories from severe patients who can honestly say that they have fully accepted this disease and it's impact; that they are still quite happy and never think that life is useless as it is. But, I think they just don't exist, or am I too pessimistic?

Anyway: it's lovely to vent from time to time.

Corrie

Every time I think I've accepted it, something comes along and I realize I haven't accepted it...