Why cant we sleep when we a tired??

[heapsreal]

Im having another insomnia whinge, well because im tired from lack of sleep and cranky.

So we feel dam tired and cant sleep, whats that about??

I have heard it can be a whacky cortisol secretions, circadian rythm problems, cytokines like IL6, but do they really know what does this to us cause it just doesnt make sense. I have attempted to treat all that shit??


Last 2 nights i have had 3 hrs sleep, supose to go to work but im not going to be able to function. 3 nights ago i slept 9 hours but this was because the last week i have been getting 4 hrs a night and i think i basically passed out. I dont think too many people have an arsenal of sleep meds like i have and have used them in as many different combinations as well(i keep my doses low), maybe michael jackson and elvis presley but hey with 6 beers i can sing and dance better then both of them put together, lol. And the beer doesnt help me sleep either. It would be nice to nail down the dam cause of the sleep issues.

Now when in a bad spell like this i have taken a small dose of seroquel(25mg) and valium(5mg) and it knocks me out and sort of resets my brain and then i can sort of sleep better again until then next time. But heres the catch, i have chronic back issues and using seroquel causing my muscles to tighten up and ache the next day. My back will spasm if i move the wrong way too. My job involves my back and my brain. I might have to bight the bullet and take the crap to make me sleep and then take the next day of and sort my back out??? If i could nap would be helpful but i lost this ability a few years ago, so i have been awake since 3am with 3 hrs sleep under my belt and will have to wait till atleast 8pm before i take my special sleep combo, if i take them to early i will be awake at 2 or 3 am again, even taken my meds at 8pm i still may wake up to early, going to sleep after 11pm for some reason gives me a better chance of sleeping through the night.

I hate relying on bloody all these meds, but it has kept me going this long. When i die im sure its going to be liver failure or kidney failure.

cheers!!!

 

[SOC]

Im having another insomnia whinge, well because im tired from lack of sleep and cranky.

So we feel dam tired and cant sleep, whats that about??

I have heard it can be a whacky cortisol secretions, circadian rythm problems, cytokines like IL6, but do they really know what does this to us cause it just doesnt make sense. I have attempted to treat all that shit??


Last 2 nights i have had 3 hrs sleep, supose to go to work but im not going to be able to function. 3 nights ago i slept 9 hours but this was because the last week i have been getting 4 hrs a night and i think i basically passed out. I dont think too many people have an arsenal of sleep meds like i have and have used them in as many different combinations as well(i keep my doses low), maybe michael jackson and elvis presley but hey with 6 beers i can sing and dance better then both of them put together, lol. And the beer doesnt help me sleep either. It would be nice to nail down the dam cause of the sleep issues.

Now when in a bad spell like this i have taken a small dose of seroquel(25mg) and valium(5mg) and it knocks me out and sort of resets my brain and then i can sort of sleep better again until then next time. But heres the catch, i have chronic back issues and using seroquel causing my muscles to tighten up and ache the next day. My back will spasm if i move the wrong way too. My job involves my back and my brain. I might have to bight the bullet and take the crap to make me sleep and then take the next day of and sort my back out??? If i could nap would be helpful but i lost this ability a few years ago, so i have been awake since 3am with 3 hrs sleep under my belt and will have to wait till atleast 8pm before i take my special sleep combo, if i take them to early i will be awake at 2 or 3 am again, even taken my meds at 8pm i still may wake up to early, going to sleep after 11pm for some reason gives me a better chance of sleeping through the night.

I hate relying on bloody all these meds, but it has kept me going this long. When i die im sure its going to be liver failure or kidney failure.

cheers!!!

Dunno if this will be of any help to you, but I'll share just in case.

I was a terrible sleeper from childhood -- couldn't fall asleep, couldn't stay asleep when I finally did fall asleep. A brilliant doc I had once told me that because of my high pain threshold, my body might be reacting to pain signals of some kind when I don't feel "in pain". She suggested OTC analgesics when I felt "weird" or couldn't sleep. No idea if there's any scientific basis, but it did indeed help. Tylenol PM (Diphenhydramine + acetaminophen) will put me to sleep even though Diphenhydramine-only sleep meds don't do the trick. Sometimes I've even added ibuprofen when I can't sleep and have popping joints. Amazing how well it works when more common sleep meds don't do a thing for me.

Once or month or so, I go through one night when all those things don't work at all. Because of the timing, I suspect something hormonal.

Trazodone (not the Pliva brand, though ) works wonderfully for me for staying asleep, but I gather that's not your problem.

And yes, liver or kidney failure will probably be the death of me, but 40 or 50 years without sleeping and with all the untreated ME symptoms would be worse.

 

[heapsreal]

pain can sometimes be an issue. Maybe i have a high tolerence for pain to, sometimes i think we sort of get use to pain and we say we just feel uncomfortable or stiff, maybe others would say they are in pain. I do get leg pains, maybe RLS and i take neurontin or lyrica, normally i say that it wakes me up and it only annoys me because it interrupts my sleep, if it was during the day i would ignore it?? neuronti nhelps the leg pains but not the total body aches, but every so often i use the lyrica instead and it helps with those aches and i do sleep better, funny thing is it doesnt help with RLS even though neurontin and lyrica are suppose to be similar. I have some avanza in the cupboard i havent used in awhile, it can knock me out if i havent used it in awhile, might give it ago, but it can increase muscle stiffness the following day.

We're chasing our tails arent we? lol.

thanks soc,
cheers!!!

 

[SOC]

pain can sometimes be an issue. Maybe i have a high tolerence for pain to, sometimes i think we sort of get use to pain and we say we just feel uncomfortable or stiff, maybe others would say they are in pain.

I'd say that's almost certainly true for me. I thought childbirth was uncomfortable and completely exhausting work, but I wouldn't have called it painful -- and I was pushing for 3 hours. I suspect more of us than we realize have gotten used to the pain, in a manner of speaking, and don't complain about it anymore because it's normal. That certainly doesn't apply to the many ME/CFS patients in severe acute pain, of course.

I do get leg pains, maybe RLS and i take neurontin or lyrica, normally i say that it wakes me up and it only annoys me because it interrupts my sleep, if it was during the day i would ignore it?? neuronti nhelps the leg pains but not the total body aches, but every so often i use the lyrica instead and it helps with those aches and i do sleep better, funny thing is it doesnt help with RLS even though neurontin and lyrica are suppose to be similar.

Yeah, when I do notice nighttime "pain", although I would call it discomfort or aches, it's a lot like that -- mostly in the legs and annoying rather than agonizing. That's when I add the ibuprofen to my bedtime pile of pills.

I just remembered -- the Cymbalta that I take routinely usually takes the edge off the aches so that the OTC analgesics work. I'm not sure whether the analgesics would be enough to let me sleep without Cymbalta doing it's job, too. And yet I wouldn't call what I feel "pain" exactly, even though I need analgesics to deal with it. Go figure. Now, if you stick me with a pin, that I would call pain.

I have some avanza in the cupboard i havent used in awhile, it can knock me out if i havent used it in awhile, might give it ago, but it can increase muscle stiffness the following day.

We're chasing our tails arent we? lol.

thanks soc,
cheers!!!

Narcotics have never been good for me -- either for sleep or pain relief. Not the right effect or the side effects were not worth the benefits. But if they'll get you some sleep, it's probably worth doing even if you do have increased muscle stiffness next day. Going without sleep is hell, IMO.

We are indeed chasing our tails. Every once in a while I think we're going to look back on this and laugh, but as soon as that crosses my mind I think, "No, there will be nothing funny about it. We are all going to be majorly pissed off that we were allowed to suffer so long and struggle so much with this illness."

You have my sincere empathy, heaps. I know the non-sleeping thing very well. Now that it isn't a big issue for me, I can't imagine going back. I think it would kill me.

 

[heapsreal]

Avanza isnt a narcotic its a sedating antidepressant, generic name is mirtazapine. Im the same with narcotic type meds and sleep, i dont sleep well at all with them. couple of years ago the doc had me on a slow release morphine pill for back pain for a short while before i had a procedure on it, i couldnt sleep at night if i took it before med. Most people these things can be sedating but i think for many of us narcotics may stimulate us in a strange way because of our whacky brain.

Thanks for the empathy SOC, i think we all have our challenges with this illness. It must have been hard to see your daughter ill but to sick to help her much. U must have an understanding hubby too. We are both lucky in a way we have supporting families. I dont know how others manage on their own.

cheers!!!

 

[taniaaust1]

So we feel dam tired and cant sleep, whats that about??

I have heard it can be a whacky cortisol secretions, circadian rythm problems, cytokines like IL6, but do they really know what does this to us cause it just doesnt make sense. I have attempted to treat all that shit??

I think some of us have sleep issues due to abnormal brain activity, I know in my case that was part of sleep issues I had in the past, (my EEGS finally came good last year after previously being abnormal in relaxed eyes shut state... my brain activity was going too fast even when I was relaxed).

Have you had an EEG to know if your brain is going into right state when you are relaxed with eyes shut or asleep? That may provide one of the answers to the why of your sleep issue.

Last 2 nights i have had 3 hrs sleep, supose to go to work but im not going to be able to function. 3 nights ago i slept 9 hours but this was because the last week i have been getting 4 hrs a night and i think i basically passed out.

***hugs*** That is exactly what used to happen to me.. no sleep or very little sleep for several days, but then I'd basically "pass out" from the no sleep after a few nights (or fall asleep then suddenly during the day).

It's so hellish and as you know.. a person just cant function like that. Im surprised you are managing to hold a job with that issue, (I know just with the sleep issue I had before just by itself.. I wouldnt have been able to hold a job).

I think "one" of the things which has helped me is trying to keep my sleep regular as possible eg taking sleep drugs the same time each night .. timing I found very important too.. take them too early and they dont work at all.

I hope you manage to work out exactly what is causing your sleep issues, so you have a better idea of things to try to treat the actual issue itself.

 

[peggy-sue]

Sadly it's often just part of the disease that gives rise to sleep problems.

A very important phase of sleep is the phase known as deep sleep (phase4) - it is a phase promoted by lots of hard physical work accomplished during the day.

We can't do a day of hard physical labour - or anything approaching it - so phase 4 sleep is denied to us.

I've been through the "managing maybe 2.5 hours total sleep a night, in lots of little bits" - after several months of this you understand the torture of sleep deprivation.

 

[Seven7]

I use trazadone 100mg to stay sleep. Temazepan 30mg to go to sleep.

Dr told me if pain is what keeps u awake they use LDN.

7

 

[svetoslav80]

We're not just tired we are sick. For me, the worse I feel the stronger my heart pounds, which is making me tense and that's the reason I can't sleep. I'm in the same period now :Retro mad:

 

[hurtingallthetimet]

hope you are sleeping and feeling better....i hate the insomnia....i use to sleep really good without any medications before i got ill..its so weird...now the insomnia feels like it can drive you mad at tiems...i will go days and days with little to no sleep...i have stayed awake for three days at a time...the pain and exhaustion unbearable but still cant sleep..i usually have a cycle i dont sleep then sleep for maybe 4-5 hours straight which is good for me but even at that i will wake up feeling like ive not slept at all exhausted and in stiff pain will lay there for awhile then i swear just brushing teeth feels like some kind of exhuasting chore..i walk downstairs exhasted and lay back down..

then during day wll be so tired and still cant take a nap or will nod off and on but never any good real sleep...sometimes i only know if ive slept some at night if i dream and since being ill the dreams are often crazy makes no sense...its strange to be dead tired and not able to sleep...i never knew that was possible until i got ill...

 

[SOC]

Thanks for the empathy SOC, i think we all have our challenges with this illness. It must have been hard to see your daughter ill but to sick to help her much. U must have an understanding hubby too. We are both lucky in a way we have supporting families. I dont know how others manage on their own.

Yes, we've had it rough for a few years now. Poor hubby has been working full-time and trying to care for two very sick folks with no additional help. I am very, very lucky to have that kind of support. He never doubted I was seriously ill and has never complained about all the excess energy and effort he has put out because of our illnesses. He is now completely exhausted all the time, too, although in the normal way, not the ME/CFS way. I have to find a way to take some of the load of him. That, more than anything else, is why I'm scrabbling for every little bit of improvement I can get.

This illness is indeed full of challenges of all sorts.

 

[SickOfSickness]

A very important phase of sleep is the phase known as deep sleep (phase4) - it is a phase promoted by lots of hard physical work accomplished during the day.

We can't do a day of hard physical labour - or anything approaching it - so phase 4 sleep is denied to us.

2 days ago I did a lot of physical work. Much more than I usually do. Then I had great sleep that night! Felt great in the morning. Rare for me. So maybe I will do more physical work. I don't think I can handle it every day but I wish I could sleep well and feel that way. There must be some threshold because some days I tired myself out physically but I don't get that great sleep. I think it was also from the previous night being too little sleep.

pain can sometimes be an issue. Maybe i have a high tolerence for pain to, sometimes i think we sort of get use to pain and we say we just feel uncomfortable or stiff, maybe others would say they are in pain.

Yes definitely happens to me, I just feel weak muscles, stiff, sore but it is different than pain.

I have a hypothesis on this, that after exertion, we would experience pain, but our bodies release natural pain killers, so we feel more tired and foggy instead of feeling the pain. IIRC, we can release very strong pain killers naturally, easily morphine strength.

I'd say that's almost certainly true for me. I thought childbirth was uncomfortable and completely exhausting work, but I wouldn't have called it painful -- and I was pushing for 3 hours. I suspect more of us than we realize have gotten used to the pain, in a manner of speaking, and don't complain about it anymore because it's normal. That certainly doesn't apply to the many ME/CFS patients in severe acute pain, of course.

I find it odd how I have a higher pain tolerance in a way, but I am also physically under stress so small things can be experienced as pain, like high sensitivity. I am tired so I am not writing well but you might get the point. It is strange having high tolerance and high sensitivity at the same time. I don't think healthy people could understand that. One reason for what I said is I believe, the skin being thinner and other things like collagen being not as healthy, normal. So a needle used to feel very painful to me, now that I have some improvement and better skin, it feels a lot less painful. People who don't understand just think I got accustomed to needles, but I am sure that is not it.

Yeah, when I do notice nighttime "pain", although I would call it discomfort or aches, it's a lot like that -- mostly in the legs and annoying rather than agonizing. That's when I add the ibuprofen to my bedtime pile of pills.

Thanks for bringing this up. I know that helped me once or twice before. I know I will forget again

 

[SickOfSickness]

In addition to the physical labor, I read how we need the daytime sunlight to signal us. Maybe more than just melatonin reasons. PWCs also can get cortisol dropping and rising at the wrong time I believe.

I think there is some reason to believe that viruses cause us to stay up late and sleep late? It sounds a bit crazy but sort of like parasites, they want an optimal environment for themselves to thrive, so they want us to avoid sunlight. So many PWCs cannot get to sleep before dawn without meds and supplements.

Anxiety makes me have insomnia too, and I have no good solution.

 

[roxie60]

I had a good night last night, I think I got 3-4 uninterupted hrs of sleep (usually only 2-2.5 hrs at a time). My brain felt les foggy this AM, my body still ached but it was refreshing thatthe brain didn't fel like a 50lb weight. I did take something last ight I have not used in yrs, I took a generic for Benedryl (25mg diphenhydramine hci). I may try it again tnight to see if i get the same results. Have to wach meds I take every day cause it seems I dont metabolize quickly so they build up in mmy system (usually by 3rd 4th day I start feelng sedated) but this is such a small amt hoping this might allow me to get a little more sleep a day. Anyone else try to use this med to help sleep? I was not sleepy when I went to bed and figured it would be another fight to get to sleep. I still woke up multiple times but sure there was a 3-4 hrs I did not wake up. I took this only becuase I was having alergy probs (always do) and usually take Sudefed. Thought I would try something that said in might cause drowzyness. Usually if a med says i will cause drowziness it makes me wide awake but thought I would try.

 

[roxie60]

Based on my head feeling less groggy this AM I also think I have been discountng my symps. I think we get use to a certain level of functioning and that en becomes our new 'normal', a higher threshold. Until this morning I had been reporting light foggy brain, after tis morning I realize I have forgotten what a clearer brain feels like, today was a noticeable difference andmuch better than wha I have been calling 'normal'. I am grateful today for my brain being clearer, one less symp to deal with. No if I could get rid of this tinitus and neck stiffness my head could qualify as the best feling part of my body.

 

[nanonug]

the worse I feel the stronger my heart pounds

My guess: elevated levels of epinephrin (aka adrenaline) as a compensatory mechanism for histamine overload.

 

[Calathea]

I think there's something going on with light/dark signals too. I ended up with circadian rhythm disorders, first Delayed Sleep Phase Syndrome (DSPS) and then Non-24 Sleep-Wake Disorder, and I think a lot of that was from getting minimal exposure to natural daylight and generally chaotic zeitgebers (cues to keep the body in rhythm - light's the main one, mealtimes are important too). Bright light therapy got my sleep pattern from a 25 hour day to a 24 hour one, and adding in darkness therapy made a big difference to being able to sleep. The thing is, lots of healthy people get crappy light/dark signals too, and they rarely end up with such severe sleep disorders. So there must be some way in which we are reacting abnormally to light/darkness, to do with serotonin and melatonin and so forth.

Another note of interest: while I was on gabapentin my sleep was better, including sleep onset (although my sleep onset was pretty good at that time due to the darkness therapy), and when I came off the gabapentin, it caused mammoth insomnia such as I had not experienced in years. Several months after coming off it, my sleep is nearly back to how it was before but not quite. So something is evidently going on there, although I don't know enough about drugs to know precisely what.

 

[heapsreal]

9 hours last night, gee my brain feels so much better/lighter then it did yesterday. I did add some panadol soc but not sure if that helped or not. I just increased my dose of my normal sleep for the night but i think out of exhaustion my brain cut out for the night once the sleeping pills gave it the signal to turn off. 9 hours is a big sleep for me, 6 would be a minimum i can work off normally, 3-4 is just awful. I wonder how much of a beating our brain takes from insomnia, it takes a beating anyway from infections too.

cheers!!!

 

[Zensational]

I had a recent sleep study an although I have mild obstructive sleep apnea, I got NO (zero) stage 4 sleep. This has been a consistent pattern for many years. I go to bed at 10pm and take about 9mg of meletonin and a Gaba (supplement) sometimes a couple of magnesium caps before bed. Sometimes I wake up several times during the 9-10 hours I am in bed and repeat the regime. I guess I am trying to make up with quantity what I am missing from the stage 4 sleep.
I find that if I do some deep breathing exercises in bed and some yoga stretches it can be helpful.
I also have Empty Sella Syndrome (pituitary) which I think might be part of the problem and is associated with CFS.

 

[soxfan]

The tiredness I feel during the day isn't a sleepy tiredness but more of a deep physical draining fatigue. I have to lay down every afternoon or else I feel as though I will collapse but no matter how fatigued I feel I never...ever..fall asleep. I don't even come close. I usually just close my eyes and lay there with my heart feeling like it is pounding out of my chest...

I never feel sleepy and the sleep doctor said it is from a neurological infection. Maybe that is why I can't ever fall asleep in the afternoon when I feel as though I could sleep for years....

Before all this my sleep was soooo wonderful..peaceful..and refreshing. I long to feel that again...