hi there
I am new here.Have been looking around and so happy to have found such a supportive forum. I have had CFS for over 10 years. Have tried many things. Last relapse was 6 mos ago and still going on. I have acute mycoplasma infection and epstein barr for 4th time! My main problem that I really need some help and guidance with is sleep. Every since the very moment I got ill 6 mos ago I am unable to sleep. I am exhausted. But I am only able to get into a light half awake half dreaming state. As soon as I close my eyes I am dreaming. My sleep studies show alpha wave intrusion. I cannot nap. If I try to close my eyes during the day I am jolted awake by what feels like a dropping feeling in my abdomen. It is terrifying. I also wake out of that dreamlike state many times during the night and then finally it all ends at 5 am when there is no possibility to get any more of anything.
I have tried so many medications minus xyrem. I am afraid of that drug for some reason. I feel that my brain has been permanently damaged somehow by these infections. Is it possible to have permanent damage to the thalamus or area that controls sleep? I am so scared and I feel hopeless. All I do is sob. I want to know if this can ever go away. I have never had sleep issues before and its been 6 mos straight without even one day of a break. I am starting antibiotics for the mycoplasma today but if the damage is done is it permanent? I cant live this way.

I am new here.Have been looking around and so happy to have found such a supportive forum. I have had CFS for over 10 years. Have tried many things. Last relapse was 6 mos ago and still going on. I have acute mycoplasma infection and epstein barr for 4th time! My main problem that I really need some help and guidance with is sleep. Every since the very moment I got ill 6 mos ago I am unable to sleep. I am exhausted. But I am only able to get into a light half awake half dreaming state. As soon as I close my eyes I am dreaming. My sleep studies show alpha wave intrusion. I cannot nap. If I try to close my eyes during the day I am jolted awake by what feels like a dropping feeling in my abdomen. It is terrifying. I also wake out of that dreamlike state many times during the night and then finally it all ends at 5 am when there is no possibility to get any more of anything.
I have tried so many medications minus xyrem. I am afraid of that drug for some reason. I feel that my brain has been permanently damaged somehow by these infections. Is it possible to have permanent damage to the thalamus or area that controls sleep? I am so scared and I feel hopeless. All I do is sob. I want to know if this can ever go away. I have never had sleep issues before and its been 6 mos straight without even one day of a break. I am starting antibiotics for the mycoplasma today but if the damage is done is it permanent? I cant live this way.