Two hours of sleep

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debbluebird
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Two hours of sleep

Postby debbluebird » Mon Mar 27, 2017 10:11 pm

My good period ended a week or so ago. It pretty much lasted almost two months. That's pretty good for me. Last night I only got two hours, 6:30 am to about 8:30 am. Before that broken sleep of two hours and then five hours later, two more hours. My thigh pain is increasing and expanding into more of my muscles along with the jerks. For a long time it was located at the top of my thigh, now it has expanded to include the middle. My leg is now hurting from below my knee to above my hip, also causing my to limp. I don't think I have PLMs. I have this while I'm awake and asleep. I think it is something else. I don't know what. I hope this bad period doesn't last too long. I'm still just taking two Methadone.

ViewsAskew
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Re: Two hours of sleep

Postby ViewsAskew » Tue Mar 28, 2017 5:34 am

Any ideas what it could be? Hope it stops soon.
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: Two hours of sleep

Postby Polar Bear » Tue Mar 28, 2017 10:02 am

deb
Is it just possible there could be some cramping going on? Sometimes my legs ache so much for no obvious reason and I've kind of put it down to this. Or alternatively to an element of my fibromyalgia.

Tbh - I just can't tell the source, i.e. fibro, arthritis or cramping...... or a parallel element of RLS (I don't think it's the RLS but who knows.)

On a good day a dose of Ibuprofen might ease the ache in the thighs and on another day I might as well throw the Brufen over my shoulder - which according to my doctor is the best place for it!!
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

badnights
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Re: Two hours of sleep

Postby badnights » Tue Mar 28, 2017 4:57 pm

That sounds miserable. Two months isn't long enough.
It sounds weird, especially the pain making you limp. Does it fade away during the day, at least?
Beth - Wishing you all restful sleep tonight
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debbluebird
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Re: Two hours of sleep

Postby debbluebird » Tue Mar 28, 2017 8:59 pm

It used to go away during the day, but now, I'm feeling some pain during the day. It's burning, like nerve pain, along with the jerks, spasms. No cramping. Maybe it's coming from my back? I don't know. It's worse today.
I did sleep last night. I took an extra Methadone, only because I had to babysit today. I don't like to take extra. The jerks started this morning while I was in their recliner, after I had put the baby to bed.
I also remembered last night that my Mother had leg pain after her stroke, when she was confined to bed. At that time they only gave her one oxicodone at bedtime and another around 4 am. The doctor even did a muscle biopsy while she was in the hospital. The results were inconclusive. I don't remember if her leg jerked.

ViewsAskew
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Re: Two hours of sleep

Postby ViewsAskew » Wed Mar 29, 2017 12:15 am

Could the burning be neuropathy?
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: Two hours of sleep

Postby debbluebird » Wed Mar 29, 2017 4:45 am

I don't know. All I know, is it causes my leg to jerk and keep me from sleeping. I'm thinking I'm going to have to add another drug of some kind.

legsbestill
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Re: Two hours of sleep

Postby legsbestill » Wed Mar 29, 2017 10:38 am

Have been thinking of you as I read of your struggles. You inspired me to try aromatherapy oils which, even if they don't hugely help the legs, are rather a nice ritual in the evening. I really hope you find something that works to settle the pain in your legs. Two hours sleep is appalling and two months of respite does not seem enough. Do the legs respond to ibuprofen? I find this a simplistic but often useful diagnostic starting point. If an anti-inflammatory works it tends to rule some forms of pain out and others in.

debbluebird
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Re: Two hours of sleep

Postby debbluebird » Wed Mar 29, 2017 11:51 pm

Might as well try. I love the oils too.

badnights
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Re: Two hours of sleep

Postby badnights » Fri Mar 31, 2017 10:53 am

Thats what I was wondering - if you have a painful neuropathy confounding the RLS. What was gabapentin like? Did you have these possible these pains when you were taking it?
Beth - Wishing you all restful sleep tonight
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Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

debbluebird
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Re: Two hours of sleep

Postby debbluebird » Sat Apr 01, 2017 10:43 pm

Gabapentin didn't help, also put weight on me.

debbluebird
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Re: Two hours of sleep

Postby debbluebird » Wed Apr 05, 2017 6:11 am

I was thinking last night, while awake in the middle of the night, that I don't know how long I will continue to fight this disease. I was thinking that if I stopped wearing my bipap mask, that would probably shorten my life span. I know what everyone else is going through and how bad it is for all of you. How do you keep going? I actually had a friend of mine tell me to snap out of it. I've been so tried lately, that I've stopped doing many things. She knows I don't sleep, yet expects me to function like normal all the time. Then the other friends start saying how they sometimes can't sleep, and they sound like it's the same kind of thing for me. They just don't get that after years of bad sleep it has taken a toll on me.

legsbestill
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Re: Two hours of sleep

Postby legsbestill » Wed Apr 05, 2017 9:41 am

Oh the degrading things that friends casually say .... I have had the exact same statements. References to their own struggles with insomnia in a tone that clearly indicates that if they can manage with their problems, how can you not just shut up and get on with yours. It is a catch 22 situation also - futile to try and correct them - they can't really help it - they simply don't understand - and at the same time you feel you have to explain why you literally cannot function in a social setting.

I know how you feel about not wanting to go on. Have sometimes felt it myself. I imagine mamy with severe rls comes face to face with it at some stage. There is a certain freedom that comes when you have those thoughts. You no longer feel it is so important to keep struggling to achieve the lowest possible dose, wear the cpap, drag yourself out of bed when a respite is allowing rest just to seem a bit more normal. They all become less important.

There is no panacea but I found journaling 3 things I feel grateful for surprisingly helpful. Often I can't be bothered even to write them down but it somehow changes the perspective of even the darkest hour. If it's any use I found a short Ted Talks video by a guy called Shawn Achor kind of helpful (it's quite funny too).

I hope you feel a bit less bleak today.

yawny
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Re: Two hours of sleep

Postby yawny » Thu Apr 06, 2017 1:37 am

debbluebird, I don't talk about this easily, but I understand where you're coming from. I have felt the same, and for me the thing that keeps me focused forward is wondering what the lesson is. I'm not religious but I'm sure there's a God. Years ago after five miscarriages, the pain and suffering turned my life upside down and I was ready to die. But I didn't. I just kept looking for the lesson in it all and it kept me looking forward. And eventually there are good times and more hard times and more lessons. For me, the struggles have made me more patient and more resilient, qualities I did not have when I was younger. I'm stronger, willing to take more risks, and more appreciative of the little things that make life enjoyable...right up until bedtime :? . I still struggle, a lot, but for me looking for the lesson provides some sort of reassurance and motivation to keep going. Thinking of you...

ViewsAskew
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Re: Two hours of sleep

Postby ViewsAskew » Thu Apr 06, 2017 6:45 am

Hugs, Deb. Wish I could deliver them in person.

I often think I am stupid - the definition of insanity as I keep trying again and again....it's probably just biology, says the jaded part of me. I was researching PhD programs tonight (again - I do this every few months). And soon, because it always happens, I will hit a rough patch, get no sleep and wonder why the heck I ever thought I could get through a PhD at this point, let alone work full time. But, I keep doing it. Maybe, just maybe, there will be a different outcome at some point, I suppose. Just hope I am not too old or my brain permanently damaged from the lack of sleep to have some semblance of life if it does.
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.


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