Terrible insomnia

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Does anyone else get insomnia? I've always had trouble getting to sleep (long before I got CFS) but last night was a whole new level of awful. My partner is away for the week and I always find it hard to sleep if there's not someone next to me in the bed.

Yesterday I had to do an errand that involved more exertion than I'm used to (at least since I've been ill) so predictably I was exhausted when I got home. I thought I would be able to sleep straight away as I felt so tired but the moment I got into bed, I didn't feel tired at all. This happens to me so often and it's really frustrating. I had to keep getting up for food and water and bathroom breaks, and I didn't get to sleep until 5am. Then I slept in till 3pm - I usually need about 10 hours of sleep.

The scary thing is that I now don't feel tired at all - I have a headache and am incredibly thirsty but I feel like I could stay awake for another 24 hours at least. The reason this is scary is because I KNOW I need rest, and that I'm going to be in for a major crash if I do too much. But I just feel like I want to do ALL the things! Help.

Does anyone else ever feel like this? I don't think that the insomnia is part of my CFS, it's just part of *me* and I've always had sort of manic episodes where I want to stay awake for a day and a night but it hasn't happened since I've had CFS, so I'm wondering how to manage it because obviously my body just isn't equipped to take that sort of strain anymore.

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  • Posted

    Since having CFS, I have always had trouble sleeping, and weirdly enough, I am even more insomniac after I have been particularly active. Like you, when I am exhausted from exertion, I would have expected to sleep well, but it is always the opposite. It is like adrenaline kicks in and takes over when I have been busy and I can't switch off. I often feel 'tired but wired' so most of the time don't sleep well and I sleep alone all the time. Hopefully when your partner is back, you will get back into your pattern of sleep again. 

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  • Posted

    Hi

    Yes I have terrible sleep issues. Insomnia mixed with very disturbed sleep. I never sleep more than a couple of hours . usually frequent waking. Usually In a lot of pain Never feel refreshed from any sleep . usually feel even worse than I did the night before . pre ME I didn't sleep for long periods but is something else with ME.

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  • Posted

    Maybe insomnia hasn't typically been part of your ME/CFS, but it is generally a very common symptom with this illness. I've also dealt with insomnia for much of my life before getting ill, but since getting ill, it's at a whole other level. One thing that helps promote insomnia is worrying about what will happen if you don't sleep. I know it's very hard to avoid this kind of thinking. What I do when I can't sleep, is I just get up and read. Or get on the computer (which I know is not a good thing to do at night). I know that eventually my body will be so sleep-deprived, that I will sleep, though this may happen in the middle of the next day. One thing you might try to help counteract your manic episodes is mindfulness meditation. There's many free apps for guided meditation.

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  • Posted

    Hey Grailmoth, Yes first 2yrs was absolute heck , hardly slept at all , it seems to depend on how much i move as you say, how much exertion or stress one has to deal with. I have a few theories on this , it seems the hpaxis system get smashed so , adrenal, hypothalumas and pituitary, so the body cant seem to regulate its hormones and adrenaline etc ,, but as you say we must , , natural hormone cream +magnesium oil , acupressure points and keeping activity within what i know is ok seems to be getting me at least 7hrs a night! Thankyou God! Its interesting to note that alot of people undergoing Kundalini awakening have alot of similar systems ,, its an energy thats coiled at the base of the spine and when released makes its way through the bodys channels , nadis etc ,, there is much to learn as far as opening chakras etc ,, its all sorta around finding God and the God within and Love and transmuting dark into light etc ,, during the process if the person is not very prepared there can be many hurdles to overcome , honestly its about connecting with the Creative energy that created everything that is within us and everything and learning how to cocreate with it,, Like moses staff has the snake on it ,,its about raising that snake up, so like beliefs, concepts are constantly being smashed and changed ,,but its even further than that its less intellectual and more spiritual , I am Kundalini awakened and still trying to understand it ,its an ongoing process, from what i see its about Loving yourself ,others and the Magic, being graceful and bowing to and being one with Grace. I really hope that didnt spin you out too much , its just another take on it all ,and its happenning to many many at this time. Hope your feeling better soon <3

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  • Posted

    Moving ,excitement etc cause bipolar in me , so manics and depressions, its a bugger this whole thing at times , agree with mindfulness ,staying out of he mind helps , so taking awareness low to dantien helps me, but im no expert and everyday is a challenge ,,You are a fellow Aussie i believe smile
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    • Posted

      Yes I am a fellow aussie, nice to meet one on here smile

      I'm a very down to earth person so I struggle with spiritual stuff but actually since getting CFS I've become interested in nature-based spirituality. One of the worst parts of this illness (and also mental illness) is feeling helpless, so I'm trying to learn to embrace that when it happens and just let go, because there's really nothing else you can do. Thinking of myself as one with the earth helps me with that. Whatever works for you, I guess!

      I've never been diagnosed with bipolar, my therapist thought I didn't have it because I only have hypomanic episodes really, and I can go for long stretches of time feeling balanced and normal. At the moment I feel somehow manic and depressed at the same time so idk. If I'm doing something creative or that feels worthwhile, I feel really hyper, but as soon as I stop I want to curl up in a ball and cry (except I can't feel enough to even be able to cry). And I have so much physical energy, which is weird for me, but no motivation to do anything with it. It's frustrating. Maybe I should look for some guided meditations

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  • Posted

    Little update, last night I only slept 2 hours - I nearly didn't go to work today because I was sure I'd be a wreck, but I was feeling so depressed I was scared to be alone so I went anyway and I felt ridiculously good, which scared me almost as much as the depression! Bit of a headache again, but it went away with food and drink. I don't understand how I can get through a full day of work AND stay up late (it's past midnight where I am now) on 2 hours of sleep while having CFS. Even before I got this illness I'd be a wreck by now.

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    • Posted

      Hi Grailmoth, Wow thats so great you can work ,  and yes i think sometimes its best that we do just push through and do things, im heading to my hometown this weekend for a family catch up and im sure its lifted my spirits! Spirituality is so unique for each of us and finding what works is the only way , i love nature also and letting go or surrender is a great thing too i agree! its not easy to connect with our emotions at times , but we keep learning and trying to, and sometimes its best to just observe everything , im def no expert but open to trying it all!! lol freezing here right now and its Qld, yes lovely to meet you to , just keep trusting you know the way , I love positive affirmations also! Wishing you some deep peaceful sleep  <3 ps i get alot of what youve described, but we will get through this and everyday in everyway get stronger and better and wiser! and more loving and balanced and lol al good things! wink

       

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  • Posted

    Are you really sure you have cfs when a patient comes to myself with long term sleep problems and the symptoms you have that is not cfs it tend to be due to the life style/sleep issues.

    Heres a few things that stand out

    headaches and thirstiness straight away flags up you do not have enough water/minerals or it is sign of diabetes which you should get checked out if you have not done so for a while.

    You sound like you are always stressed this is not good and will cause the symptoms you have mentioned learning to relax is key you are draining yourself and then not giving recovery time.

    This happens to a lot of people that are stressed the 5am pattern

    You need to lock down a proper bed time and stay in there even if you do not get to sleep also do not do things like watch tv (it is very easy to lose sleeping patterns but getting them back is very hard)

    If come say 5am you feel very tired push through it if you must take a short nap only.

    What type of food do you eat? this can be big factor in the manic episodes you describe

     

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