Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Hi,
Wanted to share that when I first got so ill, I suffered with excessive sleeping. I could sleep for days at a time, much almost as bad as when I had mono as a teen. I found out later, that this was not the norm with many who have CFS/FM and so on.
I had ideopathic hypersomnia. It is hard to be your own doctor, and we all have to be our own best medical advocates, but I wish I had known that this was a separate condition back then. I thought everyone was like me.
I had no other data to tell me otherwise...I was too exhausted, knew it was not depression, working cost me a week-end of sleep non-stop. Working meant coming home and sleeping from the time I got home until the next morning, waking up just as exhausted as the night before. Working meant falling asleep at my desk. Business trips cost me ten days of sleep time and then another two - 3 weeks of severe malaise.
Seek the best medical counsel you can...seek answers...be brave, I know it's a tough road at times.....sending hugs!
Wanted to share that when I first got so ill, I suffered with excessive sleeping. I could sleep for days at a time, much almost as bad as when I had mono as a teen. I found out later, that this was not the norm with many who have CFS/FM and so on.
I had ideopathic hypersomnia. It is hard to be your own doctor, and we all have to be our own best medical advocates, but I wish I had known that this was a separate condition back then. I thought everyone was like me.
I had no other data to tell me otherwise...I was too exhausted, knew it was not depression, working cost me a week-end of sleep non-stop. Working meant coming home and sleeping from the time I got home until the next morning, waking up just as exhausted as the night before. Working meant falling asleep at my desk. Business trips cost me ten days of sleep time and then another two - 3 weeks of severe malaise.
Seek the best medical counsel you can...seek answers...be brave, I know it's a tough road at times.....sending hugs!
But I never really got over the tiredness and wanting to sleep - yes, many of us have terrible insomnia, but others of us do suffer from hypersomnia. When I go into crash, the first thing I do is start sleeping 16 hours per day. I sleep, I wake up and I'm still tired. Maybe your idiopathic hypersomnia wasn't all that idiopathic ? How is your sleep now?
The CFS Canadian Guidelines say "There is unrefreshed sleep or sleep quantity or rhythm disturbances such as reversed or chaotic diurnal sleep rhythms."
As with so many other aspects of this illness, it affects us all the same way, but differently. We have sleep disturbance - so some of us can't sleep, others of us can't stay awake........ and we're all so very very tired.