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...
This week I went to a sleep clinic as it's part of the hoop jumping maneuvers many of us face in order to get properly diagnosed by the traditional medical community. Hardy, har, har,
She (the doctor) didn't tell me anything I didn't already KNOW as in, "your sleep issues are secondary to the underlying medical condition" ... duh, HELLO!!! Because I can't sleep more than two hours at a time EVER I never get out off Stage 1 sleep. Ok. So my internal computer never shuts down and reboots. I know that ...
But she did say something in such an interesting way I can't get it out of my head and wondered what you all thought. She told me I was never really awake because I was never really asleep. This really disturbed me and I argued that I was INDEED awake. She said, "yeah ... your body can respond to me ... but you have no ENERGY because you've had no SLEEP."
Ok. I'm a CFIDS chick who has insomnia, but aren't there MANY of you who sleep all the time? Aren't you still exhausted when you wake up?
I do understand the human body's need for sleep that goes through the entire cycle. But CFIDS can't be "hung" on insomina, right??
Right. I know I'm right. I just need someone else to say so too.
She (the doctor) didn't tell me anything I didn't already KNOW as in, "your sleep issues are secondary to the underlying medical condition" ... duh, HELLO!!! Because I can't sleep more than two hours at a time EVER I never get out off Stage 1 sleep. Ok. So my internal computer never shuts down and reboots. I know that ...
But she did say something in such an interesting way I can't get it out of my head and wondered what you all thought. She told me I was never really awake because I was never really asleep. This really disturbed me and I argued that I was INDEED awake. She said, "yeah ... your body can respond to me ... but you have no ENERGY because you've had no SLEEP."
Ok. I'm a CFIDS chick who has insomnia, but aren't there MANY of you who sleep all the time? Aren't you still exhausted when you wake up?
I do understand the human body's need for sleep that goes through the entire cycle. But CFIDS can't be "hung" on insomina, right??
Right. I know I'm right. I just need someone else to say so too.
-
theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
-
I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
Good sleep remains elusive for me.
I do use a CPAP machine for sleep apnea...and it is helpful but not the panacea for CFS.
I would pay a great deal for anyone who could guarantee me three nights in a row of good sleep...
I did find something interesting while I was dating a year ago, I found human touch...now, don't go errotic on me folks...I mean simple human touch helped me sleep better....and I believe as a youngster with 8 brothers and sisters for my mom to attend to...I experienced tactile starvation....go figure....we all got here some how....just some thoughts...
Andrew
You are absolutely right. Insomnia cannot be 'hung' on CFIDS.
I was just recommended to do a sleep study and don't believe it will tell me anything new. I too am looking for opinions about its worth. I sleep peacefully - I have dreams when I get enough sleep. When I have exhausting days i wake up at 2 or 3am and know it will lead to pain and increased symptoms.
So I think No, in my experience CFS comes first and, from the wisdom of Dr. Teitelbaum and my own doctor, doing anything and taking anything necessary to begin gettting 7-8 hrs. a night is the first step to healing after which other interventions can begin to be more successful. One of the reasons is you produce human growth hormone during sleep.You need that to reset all the systems that went off in your body when you got CFS. I think you answered my question. I hope I answered yours.
I've tried all the alternative things, but they made my mood too dark, and I don't need more secondary depression than I already have.
I think I have sleep apnea. The doctor said something along the lines that sleep is restorative and if you have broken sleep, or not getting enough sleep than it can ADD to the fatigue. So, he is saying that lack of sleep doesn't cause CFS but contributes to the symptoms.
He did get a little more technical and started talking about cells and oxygen but I'm afraid my brain couldn't take it all in at the time. Will be doing some research on the internet later!
I realise insomnia and sleep apnea are not the same but hope this may of some help to you.