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...

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amyrinpa 03/15/2015

I have many of the symptoms of CFS (and its new label) except unrefreshing sleep. This really puzzles me and my doctors. Perhaps though, I am missing the symptoms as I did with the post exertion malaise until recently. My questions are 1) Have you been diagnosed with CFS/ME or the new label without the unrefreshing sleep or 2) is the unrefreshing sleep only the days when you have post exertion malaise or otherwise just really weak. Do you have good days where you wake up and feel like your batter recharged (maybe not as good as you were before but to what you've grown accustomed to)?

Lupin1 03/15/2015

The first time I got ME my sleep was okay. It unrefreshing in the sense that it didn't heal and renew my energy I guess. Later the sleep got very very bad. At the moment it's okayish but i have to work hard on that. I'm not sure u have to have unrefreshing sleep. If your sleep is good that's brilliant...I would say it might be easier for u to recover...make the most of it. :-)

Nina1959 03/15/2015

Hi, Ditto what lupin said, it can come and go, and gets worse with progression. Some times I wake up feeling more aware and with out yt? And some times I don't, but I never feel like I can bounce out of bed and take on the day...
It's more like I'm a rechargeable battery that is losing its ability to take a full charge...
There are many subsymptoms of cfs, here is a little quiz done by the solve cfs folks.....http://solvecfs.org/what-is-mecfs/do-you-have-mecfs/

amyrinpa 03/15/2015

I have all the other symptoms except unrefreshing sleep. I get so weak that I'm housebound for days or weeks at a time. I recently spent 11 weeks housebound, five of those weeks I could barely sit up. We need to buy a recliner for me to sit in during the day when I'm weak because I have trouble holding my head up. When I have what I call weak spells, I don't feel like I ever wake up fully. I just feel lethargic day and night. Perhaps that's the unrefreshing sleep symptom that I haven't recognized. It could also be that I'm used to being half awake and up and doing tasks. I'm retired military and at times sleep was a luxury. I got very good at forcing my body to push through tired. Now though, I can't push myself past tired when it hits. I especially have trouble standing in place now, I feel like I will pass out in check out lines. In a Dr OZ segment on rebranding CFS to SEID, it was reported that standing position was a real problem with people with CFS. If I can keep moving, I last a bit longer (still weak though) if I don't I will collapse and fall down.

RichieD 03/15/2015

Can't remember what it was like in the early years, but I have problems with unrefreshing sleep every day. I wake up feeling horrible every morning, then gradually come back to life. It feels like I'm recovering from a coma.

If I fall asleep during the day, the first couple of hours after the nap I feel physically ill, like I have the flu.

So definitely yes for me on the non-refreshing sleep.

featherjack 03/15/2015

amyrinpa,
"getting so weak that I'm housebound for days or weeks at a time" sure sounds like a result of unrefreshing sleep to me. As you were trained to push on through despite how tired you were, I think you kept doing that until you just couldn't any more and crashed. That training may be making it hard for you to recognize unrefreshing sleep for wht it is
FWIW, I still haven't been able to convice my doc that ME/CFS/SEID IS gd REAL, so I'm not satisfied with his dx. He told me that's what I had after he couldn't think of any more test to rule everything else out and I AGAIN asked him, Well doc are you convinced it's CFS now? He seemed pd out of patience and said All right! You have CFS! When I asked him for a treatment plan he told me to keep working with my therapist.... grumble, grumble, gd son of a bitch. I haven't raised the topic with him since -- barely seen him for ~4 yrs, in fact. goijng to se him soon with a fistful of articles from the IOM's report and other sources.

spacepony 03/15/2015

Amyrinpa, I'm sorry you're feeling so poorly right now...is a sleep study possible? That is if you have any questions about your sleep. As others have mentioned, there may be a sleep issue that isn't apparent....

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