I have read that CFS can accompany Fibro. But seriously? falling asleep while writing or typing, having a meal, talking on the phone, reading, crotcheting? Does anyone else do this? I don't drive when I've having one of these days, but sometimes it just comes all of a sudden.
I've had this happen occasionally in the past, but the intervals between the sleep spells seem so short.
I don't have CFS that I know of but I do know that fibro can make you want to fall asleep very badly. Thankfully it happens once I get home from my part-time job because when I have to sleep I HAVE to sleep! I don't fall asleep in situations quite like yours, though.
Maybe you could benefit from reading CFS sites too, and seeing if others have similar issues. I read a few and was struck by how much more sleeping they do than fibro folks. Sleeping Beauty came to mind. It seems like a very, VERY frustrating issue with CFS.
I certainly do feel for you, Sparky. I hope you can get some help and advice from others with CFS.
Hi Sparky, maybe there is something else going on besides the fibro and/or CFS. Have you considered having a sleep study? Has anyone ever mentioned the possibility of narcolepsy? ( I think that’s the right word) worth talking to your doc about.
Yes, narcolepsy is the right word and your suggestion is good. This does sound like narcolepsy.
hi. yes I had chronic fatigue really badly for three years. Falling asleep all the time. I would get up about 7 am fall asleep about 9 am, wake up about 11 am and fall asleep about 2pm and wake up about 4 pm and fall asleep about 8 pm for the night whether I was in bed or not. I did this for 3 years, And when I was awake I wasn’t really with it, vague, behind a veil, confused. dreadful, a different state of consciousness. I would fall asleep no more who was in the room with me, and how much I wanted to saty awake I just simply couldn’t. Much better now, although I still do sometimes fall asleep during the day,and sometimes, I’m confused, and have a poor memory. I went on an organic only fruit and veg diet and removed toxins from the home, and took, magnesium and lugols iodine. It took three months but it worked, that was two years ago. I am still improving in terms of my thinking and have more energy. However I must say as hard as it is to believe the chronic fatigue was worse than my fibromyalgia pain. !!! its true. Good luck I hope this has been of some help. Barb
Yes, I did have a sleep study recheck. I've had obstructive sleep apnea for years and use a cpap. The new machine is great. So for years, I've experienced bouts of sleepiness occasionally during the day, usually related to how I slept the night before. Some times though, I can have the best nights sleep ever. Really feel refreshed, and then in an hour or two I'm suddenly so incredibly sleepy I can't even think a complete thought. If i try to fight it, its doesn't work, even when literally holding my eyelids up. So I'm back to sleep within an hour or two of waking up in the morning. Then it can be all day, sleeping 1-2 hours, up an hour or two, sleep an hour, up an hour or two. Exhausted and can't stay awake by 8pm, and in bed for the night.
I'm going to take your advice and talk to the doctor about it at my preop physical and see what she says. It just doesn't make sense to have a good nights sleep and still be that tired.
I know what your saying! I replied above and thats exactly what its like some days. So there are those days, tthat I'm just sooooo tired and sleepy all day. And the other part is sometimes its just like "click" asleep. I'm really trying to work with my primary doc to try natural alternatives to some of my symptoms. She makes a lot of suggestions which I really appreciate, and she does her research.
Wow b! Just make sure you're not drivng!
I don't even have CFS and after not sleeping well for a while can surely do this!
Renie and I go face down on the keyboards on site many a night, we have forehead imprints! ha!
Hope you can get some rest, girl, it's good for the sanity!
My husband has sleep apnea, refuses the cpap stuff, so he doesn't sleep well and most of the time you could stand him up in the middle of the freeway, and as long as he had a twig to lean on would be just fine, he'll sleep like a rock! LOL!
LOL, So true . I know how soldiers become able to sleep standing up and even with their eyes open. I have pulled off the road many times to either call someone for a ride, or sleep enough to make it somewhere safe. I've very thankful I haven't done a face plant on a table surface or the keyboard LOL
Well, my husband is a combat vet, so that explains some of it! But I have heard my Doctor say he is Narcoleptic. Doc says his one son is, that he could actually be moving through routines in karate class and be asleep! That is frightening!
Yes, I'm thankful you haven't done the face plant yet either, but you're still young! LOL!
Please take a lesson from my experience. As I described before I had really bad CFS, So bad that like others, although I didn’t know it at the time,I ended up with acute renal failure, and needed renal dialysis. Please keep an eye on your fluid intake and output. I didn’t and really suffered. Fortunately I don’t need renal diaysis any more but it was a dreadful experience and sadly some people actually die from it. Careful is the take home message. Barb
No, it doesn't make sense. Especially since you have a CPAP machine to treat your sleep apnea. However, from time to time they need to be readjusted, pressurewise. If your airway is collapsing again, you might need more pressure. That could make you more tired.
However, I am not a medical person. Nor do I know anything about CFS. I think it's great that CFS folks are speaking up here with their experiences and I hope you can all help each other on this issue. It surely sounds frustrating and more than a little bit sobering/scary to me.
Bless you both, that's a lot for one person to deal with! If the fibro isn't enough, you have CFS on top of it. I can't imagine sleeping that much. I will say that the one thing that stood out for me when I read the CFS support pages was the sense of isolation these folks sometimes suffered from so much sleep. Therefore, I think it's extremely important for you both to come back here and talk to others so you can still get the social interaction you so desperately need. It's not cool to be stuck asleep so much of the time. I did have bouts of stages like this when my fibro was at its worst so I can kind of understand what it must be like, but not really. But I'll listen. And offer support. And try to help.
SK, please please tell your hubby what my rheumy told me (scared me into using the blasted machine:) Even if you feel NO relief from it, it still helps, because you are damaging your body if you don't use it. You can get cancer, heart attacks and problems with your lungs (high blood pressure in them) from sleep apnea. Probably other ugly things too. NOT a fun prospect at our age when things like this start happening to us.
Geesh, Barb, that's horrendous. It certainly sounds like a dreadful situation and it's excellent that you remind others of the importance of fluid intake to avoid having something this catastrophic from occurring. Thank you for this excellent warning. I'm really glad that you got beyond the dialysis. I can't imagine anyone younger than 90 being on it and being a happy camper.
Yeah, SK, also tell him that sleep apnea leads to impotence! I wish my hubby would chunk his damn machine and leave me alone. LOL
Ha ha ha! Sleep machines, the new Viagra. Who knew?