free at last
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Hi everyone,
This goes out to those of you that are still in the early days ( chronic time) of the illness ME /CFS
And whos symptoms are so distressing Physically and mentally that no treatment seems to be restoring your sleep patterns to at least 6 hours a night ( day afternoon whatever ) I thought it important i told my story as others might be in the same boat now, as i was during the middle 90s.
The relapsing remitting nature Of my condition coupled with the fact that the relapses Started to affect my mental condition ( anxiety fear ) really started to take there toll when i realized sleep was the only freind my condition would partly respond to.
So when it started to get increasingly difficult to get the sleep my body so desperatly needed. The anxiety response to this was profound in that the more i tried to sleep because i badly needed it, the more i worried my self into a situation where it started to happen less and less.
This thought process is similar to the one everyone experiances from time to time, when they have got something important to do the next day, And know they need as much rest as possible for the days activeties. The more you try to shut off the mind, the more you lay there restless thinking of the coming day ahead. It seems impossible at these moments to shut the mind off to the point when sleep happens. and if thats you read on
After this continued for weeks, i also started to look at the clock a lot when waking, to see how much sleep i had just got, often it was about 2 or 3 hours, I would then get anxiouse it wasnt enough and would try to get more, but of course by now my mind was thinking again, and i had partly woke myself up. And often that might be it untill the next night, and so the pattern continued.
The habit of constantly checking the clock was in itself making the problem worse, But i only realized all this once i had got my sleep patterns to a stage where i was truely getting the sleep a ME sufferer so badly has to sustain. This went on for many months, at a time when the ME had turned chronic, and a viciouse cycle came about of less sleep, more illnes. More illness less sleep ect, and so on.
If one does not break this cycle then recovery will most likely not occur.
I was being given a sleeping pill by my GP zopiclone ( zimovane ) which helped a little but not much, with the pattern described continuing even though they made me a little drowsy.
At some point i agreed to try amitriptylene which for those that dont know is a antidepressant
I resisted all attempts for a long time to take antidepressants 1 because i knew it was a illness and not depression that was destroying my life, and 2 my heart was often racing, most notable ( you guessed it ) when trying to sleep. And i didnt want a drug that might make that worse, as i suspected a antidepressant would.
Anyway they stopped the Zopiclone, so i reluctantly agreed to take the Amitriptylene.
Now as i pointed out i know my illness was not depression because of the way it progressed into it, with constant infections and fevers of over 100 f more times than i care to remember ( i thought advice to try a antidepressant was a insult actually )
Well what i can say. this drug for me, and my seriouse sleep disorder was like dynamite
I couldnt belive the effect it had the very first time i took it. I slept 6 hours the first time, ( 4 hours ) then 2 more as i fell asleep again WOW
Antidepressants take time to work on depression and anxiety, so i knew it was not the antidepressant per se that had just done this, it must have been something else, a side effect of very heavy ( like a ton of bricks ) drowsy sleep. So did it matter that it was a antidepressant
You bet your life it didnt, i was so relieved i could have cried.
Im actually wondering about serotonin depletion too
You may not belive me but couldnt care less ( sorry but i dont ) i just guessed at this, and its only words i picked up about ME CFS over the years, i dont understand the science behind all this ( maybe the guys who are good at this can help me out here ) but heres what i just discovered by clicking away on the net
Heres a qoute
The Importance of a Good Nights Sleep
Studies have shown that individuals who were prevented from going into deep sleep for a period of a week develop the same symptoms associated with FMS and CFS; diffuse pain, fatigue, depression, anxiety, irritability, stomach disturbances, and headaches. Sleep deprivation markedly increases inflammatory cytokines (pain causing chemicals)by a whopping 40%.
Therefore, restoring deep restorative sleep is one of the most important steps in beating fibromyalgia, if not the most important step of all
HERES A LINK
http://www.ei-resource.org/articles/fibromyalgia-articles/causes-and-treatment-of-fibromyalgia/
I suspect if i hunt around on this i will discover more
Any way back on track, the effect of amitriptylene ( or the side effect already mentioned )
Did not diminish, in the next 4 weeks i got more sleep than probably the last previouse 6 months
Wow i really had got lucky, and i belive this drug may have in effect saved my life
But, and this is the important BUT, did my illness stop ? Not on your nelly, the relapses and remissions continued (though without the fevers at this point, but all the other symptoms remaind )
I still got so ill that i had to lay down for hours at a time.
But as the months and years ticked by, i noticed something remarkable happening
The relapses were becoming not as powerful. and the time spent like that not as long
THANKS ILL TAKE IT
I want to also add that i was heavily into nutrition, i had a book that was like my little bible, about foods and there nutrition properties.
I started eating as many different salad type veg as i could fit on a plate, Fresh fish, salmon, prawns Crab.
Raw garlic chopped on the plate ( taste horrible but ) Raw garlic and onion have been shown to have anti viral propeties. I certaibly had enough viral attacks to at least keep a open mind, It couldnt hurt, so why the hell not
I also was taking hi strength magneasium tablets, hi strength vit C, a multi vit. evening primrose oil
Same reasoning, didnt think it could hurt as long as i didnt overdose on vitamins, Free radicals and all that.
Im now 15 years into it, no longer take amitriptylene or vitamins. I sleep well. hardly get any relapses now (though have after strenuouse exercise on a few occassions )
Not exactly sure whats helped, and whats not helped as much, in all this fighting for my body. But I know the amitriptylene really did save my life. Take this story or dont. But i hope those that identify with what happened to me. try what i did. what have you got to lose ?
Really hope this helps someone, i really do. I know what its like to suffer. and maybe it will work for you too.
Neil
This goes out to those of you that are still in the early days ( chronic time) of the illness ME /CFS
And whos symptoms are so distressing Physically and mentally that no treatment seems to be restoring your sleep patterns to at least 6 hours a night ( day afternoon whatever ) I thought it important i told my story as others might be in the same boat now, as i was during the middle 90s.
The relapsing remitting nature Of my condition coupled with the fact that the relapses Started to affect my mental condition ( anxiety fear ) really started to take there toll when i realized sleep was the only freind my condition would partly respond to.
So when it started to get increasingly difficult to get the sleep my body so desperatly needed. The anxiety response to this was profound in that the more i tried to sleep because i badly needed it, the more i worried my self into a situation where it started to happen less and less.
This thought process is similar to the one everyone experiances from time to time, when they have got something important to do the next day, And know they need as much rest as possible for the days activeties. The more you try to shut off the mind, the more you lay there restless thinking of the coming day ahead. It seems impossible at these moments to shut the mind off to the point when sleep happens. and if thats you read on
After this continued for weeks, i also started to look at the clock a lot when waking, to see how much sleep i had just got, often it was about 2 or 3 hours, I would then get anxiouse it wasnt enough and would try to get more, but of course by now my mind was thinking again, and i had partly woke myself up. And often that might be it untill the next night, and so the pattern continued.
The habit of constantly checking the clock was in itself making the problem worse, But i only realized all this once i had got my sleep patterns to a stage where i was truely getting the sleep a ME sufferer so badly has to sustain. This went on for many months, at a time when the ME had turned chronic, and a viciouse cycle came about of less sleep, more illnes. More illness less sleep ect, and so on.
If one does not break this cycle then recovery will most likely not occur.
I was being given a sleeping pill by my GP zopiclone ( zimovane ) which helped a little but not much, with the pattern described continuing even though they made me a little drowsy.
At some point i agreed to try amitriptylene which for those that dont know is a antidepressant
I resisted all attempts for a long time to take antidepressants 1 because i knew it was a illness and not depression that was destroying my life, and 2 my heart was often racing, most notable ( you guessed it ) when trying to sleep. And i didnt want a drug that might make that worse, as i suspected a antidepressant would.
Anyway they stopped the Zopiclone, so i reluctantly agreed to take the Amitriptylene.
Now as i pointed out i know my illness was not depression because of the way it progressed into it, with constant infections and fevers of over 100 f more times than i care to remember ( i thought advice to try a antidepressant was a insult actually )
Well what i can say. this drug for me, and my seriouse sleep disorder was like dynamite
I couldnt belive the effect it had the very first time i took it. I slept 6 hours the first time, ( 4 hours ) then 2 more as i fell asleep again WOW
Antidepressants take time to work on depression and anxiety, so i knew it was not the antidepressant per se that had just done this, it must have been something else, a side effect of very heavy ( like a ton of bricks ) drowsy sleep. So did it matter that it was a antidepressant
You bet your life it didnt, i was so relieved i could have cried.
Im actually wondering about serotonin depletion too
You may not belive me but couldnt care less ( sorry but i dont ) i just guessed at this, and its only words i picked up about ME CFS over the years, i dont understand the science behind all this ( maybe the guys who are good at this can help me out here ) but heres what i just discovered by clicking away on the net
Heres a qoute
The Importance of a Good Nights Sleep
Studies have shown that individuals who were prevented from going into deep sleep for a period of a week develop the same symptoms associated with FMS and CFS; diffuse pain, fatigue, depression, anxiety, irritability, stomach disturbances, and headaches. Sleep deprivation markedly increases inflammatory cytokines (pain causing chemicals)by a whopping 40%.
Therefore, restoring deep restorative sleep is one of the most important steps in beating fibromyalgia, if not the most important step of all
HERES A LINK
http://www.ei-resource.org/articles/fibromyalgia-articles/causes-and-treatment-of-fibromyalgia/
I suspect if i hunt around on this i will discover more
Any way back on track, the effect of amitriptylene ( or the side effect already mentioned )
Did not diminish, in the next 4 weeks i got more sleep than probably the last previouse 6 months
Wow i really had got lucky, and i belive this drug may have in effect saved my life
But, and this is the important BUT, did my illness stop ? Not on your nelly, the relapses and remissions continued (though without the fevers at this point, but all the other symptoms remaind )
I still got so ill that i had to lay down for hours at a time.
But as the months and years ticked by, i noticed something remarkable happening
The relapses were becoming not as powerful. and the time spent like that not as long
THANKS ILL TAKE IT
I want to also add that i was heavily into nutrition, i had a book that was like my little bible, about foods and there nutrition properties.
I started eating as many different salad type veg as i could fit on a plate, Fresh fish, salmon, prawns Crab.
Raw garlic chopped on the plate ( taste horrible but ) Raw garlic and onion have been shown to have anti viral propeties. I certaibly had enough viral attacks to at least keep a open mind, It couldnt hurt, so why the hell not
I also was taking hi strength magneasium tablets, hi strength vit C, a multi vit. evening primrose oil
Same reasoning, didnt think it could hurt as long as i didnt overdose on vitamins, Free radicals and all that.
Im now 15 years into it, no longer take amitriptylene or vitamins. I sleep well. hardly get any relapses now (though have after strenuouse exercise on a few occassions )
Not exactly sure whats helped, and whats not helped as much, in all this fighting for my body. But I know the amitriptylene really did save my life. Take this story or dont. But i hope those that identify with what happened to me. try what i did. what have you got to lose ?
Really hope this helps someone, i really do. I know what its like to suffer. and maybe it will work for you too.
Neil