"Fatigue" or not fatigue - that is the question...

[Allyson]

I can feel different kinds of fatigue as well...it just is very rarely sleepiness. In fact I never feel sleepy at all. I can tell you if I didn't have this fatigue/tiredness then I could live a normal life. I really don't have any other symptoms that are disabling for me.
I am hoping my sleep study shows that I have some type of sleep disorder and that is my main problem. I have decided to discontinue taking Klonopin at night since the sleep tech told me it was not a good one to take for sleep. Then my husband just went to a CE class on sleep and sleep disorders etc...and the doctor there said the same thing. Don't take benzos for sleep as they will prevent the deep stage. Maybe that is why I feel so awful in the mornings now...

Hi Soxfan a good tip my sellp doc told me with klonazepam - just bite off the tiiest bit you can wiht your teeth
i also crush it in my tettth lihgtly as it takes ages to dissovle in water

often this is nough to get you off - or back to - sleep

If i really want to sleep and this does not work within half and hour or so i repeat it. and wash it down with another pill like L glutamine that i would be tainkig overnight anyway.

this limits the amount you take at least; i only do this about once a week or so to prevent depencency

IM Vit b12 is the best thing i have found for sleep so far though.

best,,

ALLy

 

[soxfan]

I just started seeing a new doctor and I am sure in time she will start me on different things for my sleep which is totally I believe the root of most of my problems. I have absolutely terrible sleep....even if I seem to sleep when I get out of bed I feel tired. When I wake in the morning I am ready to get up and sometimes I don't know how awful I am going to feel until an hour or two later. Sometimes it is immediate.
I have to get off the Klonopin even though it helps me sleep I am tired and dragging all day. I think I am going to go back to either ambien or lunesta as I wasn't dragging all day with those.

I had 11 tubes of blood taken a week ago for all kinds of things and just had another sleep study so when I see the doc on the 29th I am hoping she will have some answers for me. I do know I have high cortisol at night which is disturbing my sleep too.
I think I only really get 5 or 6 hours sleep at night and it isn't a good quality so that is most likely why I feel awful all the time and need to lay down in the afternoons. I just run out of steam....I would call my fatigue a deep tiredness...

 

[Allyson]

oh sympathies soxfan ,,, nothing worse

i assume you have cut out all caffeine coke etc... and off the laptop by 6pm a the latest
have you tired a blue light ithe mornings - that helped me a lot befor the IM B12

ALly

 

[soxfan]

Yeah...have tried just about everything. I am just getting a poor quality sleep for some reason. Hopefully the study will have an answer...if I slept long enough!

 

[ukxmrv]

Fatigue in CFS is often described as not being relieved by rest so that's an important distinction to make when looking at different diagnoses for that symptom.

 

[Allyson]

Yeah...have tried just about everything. I am just getting a poor quality sleep for some reason. Hopefully the study will have an answer...if I slept long enough!

good luck soxfan - nothin g worse thatn not sleeping so i hoe you find something that helps

 

[soxfan]

Well....I only slept 3 hours 20 minutes. It wasn't quite as much as they wanted but they did indicate there is no sleep apnea or RLS. I really thought I had slept more than that! Anyway of course since I wasn't actually sleeping very long I had like zero REM and just a little deep sleep between 4:30am-6:15am when I woke up. That isn't surprising though.

This will be my last study....I apparently just can't sleep hooked up no matter what I take for sleep meds. The doctor is trying some other stuff to try and help me feel rested in the am.

I want to add that resting or sleeping does not relieve my fatigue....nothing does.

 

[Allyson]

I hear ya Sox and sorry aobut that

for my sleep study i could not sleep
so they said take a sleeping tablet

i did - then I slept all night 11 30 pm til 6 am

then they wrote - she sleeps well ( is hence imagining her sleep problems !!! lol )

 

[soxfan]

Wow...I am impressed you slept so long. I actually took double my sleep meds and still couldn't. Here at home I had been sleeping so well so I was confident it would be fine. I think they wanted to make sure apnea or RLS was not the cause of my unrefreshing sleep and they did determine that so all I know is that my sleep is just not good quality or I am not in the recovery stages long enough.

 

[Allyson]

Yes a full sleepng tab will make me sleep several hours but i do not want to get dependent on the m so save them for emegrencies. soxfan

 

[Allyson]

Wow...I am impressed you slept so long. I actually took double my sleep meds and still couldn't. Here at home I had been sleeping so well so I was confident it would be fine. I think they wanted to make sure apnea or RLS was not the cause of my unrefreshing sleep and they did determine that so all I know is that my sleep is just not good quality or I am not in the recovery stages long enough.

as it turned outhey wer ONLY lookig for sleep anea as they di not believe in ME /cfs any way !

anyway they wer nice and i go back occasionally to educate them....lol

they did give me ablu light which helped some

and another doc prescribed IM Vit B 12 which helped a LOT!

but some places now do the sleep studies at home - they wire you up and and send you home and that woud be better.

 

[soxfan]

They were looking at everything....sleep cycles...oxygen levels...heart rate...etc. I just think my sleep cycles are messed up as I spend too much time in the light stages and not enough in the deep stages. I have no idea why this happens or what can fix it. Since I became sick back in 2004 this has been the case. Although I have to say I do sleep very good on vacation and feel a lot better in the mornings. I am sure that has to do with less stress though..

 

[Allyson]

They were looking at everything....sleep cycles...oxygen levels...heart rate...etc. I just think my sleep cycles are messed up as I spend too much time in the light stages and not enough in the deep stages. I have no idea why this happens or what can fix it. Since I became sick back in 2004 this has been the case. Although I have to say I do sleep very good on vacation and feel a lot better in the mornings. I am sure that has to do with less stress though..

Great that it is being looked into - nothing worse then bad sleep - did you used to travelal lot crossing time zones?

 

[soxfan]

No...the only time I get messed up is when we go to Hawaii as it is 6 hours behind where we live. So you are basically re-living the same day over with no sleep but I usually recover pretty quickly on the way there. Coming back is worse for some reason. I am supposed to try L-Tryptophan and Seriphos but have been afraid to....Like I said....I seem to be sleeping well at night and sometimes 4-5 hours before waking and then falling back to sleep so I really have no clue.