Posted , 5 users are following.
Does anyone else feel terrible if they don't get REM sleep? Also, if you've taken melatonin for sleep issues, have you noticed any impact on the amount of REM sleep you get? I think I may have identified a pattern...
0 likes, 14 replies
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jen123456 grailmoth
Posted
Beverley_01 grailmoth
Posted
Hi Grailmoth,
I'm not sure how you'd know if you got to REM sleep as with the condition you don't get restful sleep anyway. Do you mean if you don't dream? Or don't remember dreaming?
Beverley
grailmoth Beverley_01
Posted
Yes you're right that I can't know for certain if I'm getting REM sleep, however I think I have a good idea of when it happens because it feels different. Dreaming is only part of it - even if I don't have any dreams, I will wake up remembering that I slept and it almost feels like I'm partly conscious and aware that I'm sleeping while I'm sleeping, if that makes sense. This is a hard thing to describe as I don't know if anyone else experiences it. Probably best illustrated with an example (I wanted to write this in my initial post but didn't have time)...
I usually struggle to get to sleep for about 3 hours on average, sometimes much longer. My doctor prescribed me melatonin to see if it helped. I had been taking it most nights for about a week without noticing any difference, positive or negative, to my sleep pattern.
A few days ago I had a really bad CFS crash brought on by stress. In the hope it would help me recover, I decided to try going to bed very early and also taking my melatonin an hour before bed (actually recommended in the instructions) rather than right before trying to sleep as I had been doing previously.
I tried this for 2 nights in a row. Both times I lay awake for hours as usual, then suddenly snapped into consciousness very early in the morning (I didn't check the time but probably 4 or 5am). I had no awareness of having slept and I felt as sick as if I'd been awake for 12 hours straight yet there was a blank period in my memory which I took to mean I must have been unconscious. It felt like waking up from anesthesia. After many more hours of lying awake (and a few snacks - I was starving) I went to sleep again for only 2 hours, during which I had that feeling of "knowing" I was sleeping. I felt better after those 2 hours of "proper" sleep - not great, but well enough that I could drag myself out of bed.
I can't say for sure if it was the stress, the melatonin, the early bedtime or the CFS flareup or some combination that caused these unpleasant experiences, but last night I decided to go back to my normal routine as what I was doing clearly wasn't working for me. I didn't take my melatonin and I went to bed at midnight. When I eventually got to sleep, I had dreams and I woke up feeling the best I've felt in ages. Most of the symptoms of my CFS flareup are gone today.
Apart from this one isolated incident, it's very common for me to wake up from unrefreshing sleep feeling worse than I did before the sleep, then go back to sleep for 1-2 hours and have very vivid dreams, and wake up from that second sleep feeling much better.
I don't know if it's common for sleep to help CFS symptoms, but for me it definitely does - ONLY if it's this particular kind of sleep which I think REM sleep, though. I realise there's a lot to unpack here!
Beverley_01 grailmoth
Posted
Hi again ,
I guess I'm not the best to ask because I do sleep and get back to sleep most of the time but wake up unrefreshed. I say mostly because I have had nights of very little sleep as well. But, what struck me here was you asking if it could be a combination of events which I have ended up starting to believe definitely applies to my own unique manifestation of the condition. E.g. a couple of weeks ago I saw the muscular skeletal specialist who had me doing what I would consider minimal movements but there was stretching involved. I then had a rest day but attempted swimming the next day, very little and slowly and gentle stretching inbetween. A sharp pain ran through my back like an electric shock so I did back stroke gently and got out with difficulty walking after (which i get alot anyway) I haven't swam in a few years and the specialist advised it. More rest, physio the next day and later I asked my son to help me from the floor . My back felt weird but that's not unusual. I found it difficult to get up to bed and was then in pain for 10 days. Walking was awful, hips were agony, back the same. I rested and nothing seemed to change. Then my shoulders, neck hands-everything joined in! Headache, eye ache, bloating whilst in pain with the other stuff. I totally put this down to the several events and not just one. My body was basically overwhelmed from these extras. It's hard to know what will affect us I guess as we don't always get the clues people of typical health get.
Just curious, how was your sleep prior to cfs/me?
Beverley
grailmoth Beverley_01
Posted
My sleep patterns haven't actually changed since getting cfs, it's always been this way! I think now I just notice it more when I don't get good sleep because my body has such a low tolerance to any kind of physical stress since getting CFS.
Beverley_01 grailmoth
Posted
Ah, so you've had sleeping issues long term? I guess that makes it a bit harder to work through things. I read in your reply to someone else that you can't sleep when you're cold and I definitely get that like you. Since the cfs/me I get one cold foot and nose sometimes even when it's really warm! Once I'm cold it's like I'm "petrified" in my bed. I'm too cold and exhausted to get out and get something to help make me warmer and I just lay there unable to sleep or move.
Have you tried kalms or other herbal remedies? I've not myself but a friend with cfs/me who used to have very poor sleep took them. They too had sleep issues before cfs/me and took them before too and seemed to help them.
Beverley
grailmoth Beverley_01
Posted
Yes I'm just the same when I'm cold!
I drink chamomile and lavender tea sometimes and I have a lavender essential oil which I find great for anxiety, but since it's not anxiety that keeps me awake it doesn't really help with the sleeping.
I kinda feel like my brain needs that quiet, dark time at night to process things and that's why it takes me so long to get to sleep - there's work to be done! It's literally the only time when I don't have any obligations or anything I'm looking forward to/expecting, so it's the only time when my conscious and subconscious mind is completely free to wander and sort stuff out. I actually don't think I should fight that but it's hard to rid myself of the feeling that "there's something wrong with me" and "what if I don't get to sleep at all!!" (ironically, on the few occasions I haven't slept at all, I haven't felt any worse for it)
jen123456 grailmoth
Posted
I'm a TERRIBLE sleeper too and yes, when i don't get my sleep, i feel awful the next day (which happens a lot). Interestingly enough my dr (endo) told me NOT to take melatonin because it is the END product of what your body makes for you to sleep. She said by taking it, you are then teaching your body it doesn't need to make it....you will supply it. Furthermore, melatonin makes me not sleep well....very light (if any) sleeping.....not sure why! Again, i guess we are all different. I wish there was a magic answer for sleep....i try all the things people say....no electronics before bed....black out room.....essential oils....epsom salt bath....you name it....nothing helps . ....so if ANYONE has the answer please share....ty
Beverley_01 jen123456
Posted
Do you drink caffeine during the day?
Beverley
jen123456 Beverley_01
Posted
elaine62759 grailmoth
Posted
The things I've found helpful to get better sleep are a snack about 30 minutes before bedtime (I have warm milk and toast), keeping the bedroom cool, reading a book or magazine, not going to bed until I'm utterly exhausted (if I go earlier I don't sleep), listening to guided meditations (you get ones especially to help you drift off to sleep) and, although it sounds strange, try and make yourself stay awake by keeping your eyes open! If you do this your body naturally tries to resist it and you want to close your eyes as it's dark and it sometimes helps you sleep. Good luck finding something that helps.
grailmoth elaine62759
Posted
Thanks for these tips! I actually often find I'm too cold to get to sleep and have to make myself a heat pack just so I can relax.
philsey grailmoth
Posted
grailmoth philsey
Posted
Interesting! In order for that suggestion to work you would have to be able to guarantee getting REM sleep when you had a nap during the day.
I've actually found that the worst thing for me is interrupted sleep. I don't have dreams at all for most of the night, only the few hours before waking and if I'm woken up before I get to that stage of the sleep cycle I feel like death. If I'm woken up by an alarm or any other stimulus (my partner getting up is enough to wake me) I feel really ill, like I've been drugged, and I have to go back to sleep immediately. It's usually only then that I have REM sleep and only for 1-2 hours.
Because of this I actually stopped setting an alarm in the morning. Unfortunately it doesn't work because I'm still woken up by my partner getting out of bed for work, but it was great for a when he was on holiday - I had never felt more rested.
I had not considered oxygen deficit; that seems like something that could possibly be determined by a sleep study? My physician wanted me to have one but wanted me to try melatonin first because he thought it was very unlikely I had a sleep disorder such as sleep apnea.