Any of you ever have sleepless nights?

Hi Linda I am dealing with residuals from GBS and the tingling and humming in my hands and feet are still present. I also liked to sleep in. I usually hate to go to bed bc it takes awhile for me to fall asleep. So I stay up late and get good and tired and then try. Most times I’m up again at 6:30-7:00 am. Then after a few days of that, I zonk out at 10 pm and wake at 8 am. Don’t know if it’s the meds I’m on or just the way I’m gonna be or just temporary. Not helpful, I know, but you are not alone in this:)

hi Linda, I am like smiley. I had GBS 25 years ago but still have residuals and I too don’t sleep well. I try to stay up as long as I can and get really sleepy. Then I hit the bed. It sometimes still takes a while to fall asleep. Most of us feel our residuals more when we lie down. I think that they are there all day but when we relax and are quiet, we notice them even more.

I am an early riser so if I get 6 hours sleep, that is a good night. I too nod off here and there during the day if I sit and do nothing. I am always tired. When I was on Gabapentin, I did sleep better. It helped with the residuals and when I would fall asleep, it was a deep sleep that left me refreshed. You have considered going on it so this may help your sleeping issue.

Linda,

I have not had problems sleeping with CIDP until this month. I started having the pain (new development, I never had it before) and it has been keeping me up at night or waking me up as well. So far I have not found anything that helps me with the pain (was going to try Gabapentin but am holding off for now, you might have replied to my other post about that). Sorry I don’t have any ideas but I am hoping someone else will have some for both of us!

Having a terrible time sleeping, but it’s not consistent. Usually go to bed about 1030 and watch Jay Leno for 15 or 30 minutes depending how bad it is. But then many times I lie awake until one o’clock, get up and take a temazepam. I don’t like to take it because the next day I feel drowsy. Other times I go to sleep by midnight. I envy Carol because as soon as we turn out the light she falls asleep within five minutes, invariably. I’m not sure if there’s any connection with the CIDP because I don’t have any pain or tingling, just numbness. When I’m resting I’m only aware of the numbness in my hands. It’s like wearing a tight leather glove. My feet are so far gone that I don’t feel anything there.
Of course, my sleep problems might also be age-related but I’m not sure. I wish the days to come back when I can go to sleep right away and wake up fully rested in the morning but I’m afraid those times are gone forever.

LindaH,
I have CIDP and I also have had a problem sleeping because of pain in my feet and legs [Restless Leg Syndrome doesn’t help either]. I have talked this over with my neurologist and he proscribed some meds to help me get off to sleep. The problem is that it will work for a month or two and then I have to switch to something else.

Have you talked this over with your neurologist and pressed for something to help knock back the pain so you can sleep?

Jim C

All the time , thats why i am grumpy 😡 ( well its an excuse eh). i am also very jealous of anyone that can just sleep. sometimes i would kill for a good nights sleep or maybe just a little shut eye;) but i have also noticed that when i do get very relaxed…..ie at the point when you think you are just about to fall asleep..ZAP-something hits the nerves hard and i am sure i have jumped off the bed. its like when you see them hitting someone with the paddles of a defibralator. now i am so used to it that i ignore it and know that i am geting close to sleep. it isn’t just the amount of sleep , its also the quality of sleep. i know i have had a good nights sleep if i have had a dream . but i don’t dream often or don’t remember. some nights i just close my eyes until the morning….but i can hear everything.
ps also noticed that when you are really tired and can’t sleep if you put ear plugs in …..then its like a sudden dose of sleeping pills. must be due to blocking out stimulation i guess. now anyone thats read this should be well asleep….. so sssshhhhh, ZAP BANG…lol

Hi

I wish for a good sleep without drugs, etc. I have used ear plugs for a number of years now (can’t sleep at all without them!). They do help block outside stimuli, but for me it is the “noise” in my body that causes the problem.

I have hyperalgesia in my back. I can’t put pressure, anything (even clothes sometimes) on it, without causing a burning sensation that can last up to 30 minutes. That, along with the numbness, tingling, pins and needles and electrical shocks in my feet , calves, arms and hands (altho, to be fair, can’t feel too much in my toes anymore!) – what I term “noise” definitely keeps me awake.

My drug regime helps tone it down enough for sleep. IVIg helps tone it down. The thing is, some nights are better than others, no matter what. I know that we all have difficulty sleeping from time to time, but not 3-4 nights out of 7. When I do go to sleep, I don’t dream anymore. I put it down to the meds.

You have to get something to help you sleep more consistently. It is imperative – no one can survive without rest. The docs will help you – using your journal will help for this, it gives them a sense of the issue. The sleep study sounds like it is interesting.

How many of you use the CPAP machine? It seems fairly common, certainly amongst people I know with lupus.

Debs

As Davyt saids I get to sleep very quikly went I´m in bed, but seconds or minutos after
is like someone put me defibralator paddles and apply 100 volts, making me jump f bed.
If is not this are cramps or strong shaking waves in legs and arms. That is the whole nigth,
si I´m in bed from 23:00 to 05:00, having to get of bed 3 or 4 times during nigth to have a walk
to get rid of the paresthesias.
Tomorrow I go to a sychologist to see if I get eny help.
I know he will put me on more pills to sleep.
Not good, already tried them and is even worst.

Pablo,

Hi Linda:

With my weekly pulse steroid prescription, I have about 2-3 sleepless nights per week.. This can really raise havoc on things… I don’t take any sleeping type pills.. Maybe I should, but think I’m already taking enough pills.. Merry Christmas, and Peace on Earth… Dean

As Davyt saids I get to sleep very quikly went I´m in bed, but seconds or minutos after
is like someone put me defibralator paddles and apply 100 volts, making me jump f bed.
If is not this are cramps or strong shaking waves in legs and arms. That is the whole nigth,
si I´m in bed from 23:00 to 05:00, having to get of bed 3 or 4 times during nigth to have a walk
to get rid of the paresthesias.
Tomorrow I go to a sychologist to see if I get eny help.
I know he will put me on more pills to sleep.
Not good, already tried them and is even worst.

Pablo,