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Sleep I need sleep...

Posted , 9 users are following.

helene51978
helene51978

The hardest thing with my episodes is getting the proper sleep. I’m slugging through the days, trying to rest but not sleeping, then trying to sleep at night not sleeping. And as you all know, it’s never a restful sleep. Any suggestions?  I’d be so happy to hear. Just call me sleepless in Seattle. Just kidding I don’t live in Seattle. 

0 likes, 19 replies

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  • Jadakink
    Jadakink helene51978

    Posted

    Hi. Unfortunately I don’t have answers and have tried every alternative therapy in the hope it would help as well as give a restful sleep. I know it’s wrong but after being awake for 48 hrs on one occasion and bouncing off the walls I did resort to medication. 
    • helene51978
      helene51978 Jadakink

      Posted

      Sometimes we want to do all the right things. However our bodies seem not to respond the same as others. I do take a small dose of Ativan. But there are times that doesn’t work as well either. Also the side effects of taking more and for long durations are not another thing I want to deal with. I have had some luck occasionally with Celestial seasoning Sleepytime Xtra tea. It has camomile and a small amount of velarian in it. It’s over the counter in the grocery store. I hope the very best for you. I also hope to be posting anything that seems to help with sleep. Good luck and thank you for responding 
    • robin52198
      robin52198 Jadakink

      Posted

       Hello, I’m sorry but I do not have anything done for you. Unfortunately I have been unable to post and I was wondering if somebody could help me with that. Struggling with a lot of fatigue and brain fog. One of my questions as I am looking for a good To add to my my how many juices. I just tried a product called Eden and was unhappy with it. Again I’m sorry INot able to respond to your concerns,Again I am sorry but I really could use some help. So if someone has an idea about a protein supplementI would really appreciate it. Also if someone could explain in a very simple way how I couldSend a post. I am a registered user. Thank you.
  • Tishatasha78
    Tishatasha78 helene51978

    Posted

    Hi I’ve had me for over 20 years and unfortunately this problem only gets worse I now have reversed sleep so I don’t sleep till 4am and wake at 12 pm feeling awful. I have tried almost everything the only thing that has sort of helped is hemp tea give it a try a hope u find it helps 
    • helene51978
      helene51978 Tishatasha78

      Posted

      Hi, it’s a horrible way to feel I know. That’s what was happening to me at first. I would only sleep between the hours of like 6-7 am and get up between 10am and 12 pm. No one knew what the heck was going on. Now it’s more episodic, I have a few good days or weeks and then I’m slammed down again. I’m hoping to try CBD oil with Sativa stain for the day. And the calming one for the evening. I will be posting how it goes. Thank you for responding and good luck. 

  • philsey
    philsey helene51978

    Posted

    Helene

    It is a common symptom to have disordered or even completely re-ordered sleep patterns. My specialist said from the beginning, if your body wants to sleep, then let it. A physician later refined this. She said apparently REM sleep is more healing, so don't let yourself sleep for more than half an hour. i.e. when you feel sleepy in the day, go to sleep but put the alarm on. 

    • helene51978
      helene51978 philsey

      Posted

      Philsey, it is weird, how going to bed to sleep at night and actually getting sleep are so foreign to us. I have difficulty sleeping during the day. To many little things I feel responsible for. 

      I’m still searching for the right combination of things, or thing that will help. Although there is a tea by Celestial seasonings, Sleepytime Extra that does help on occasion. You can usually find it in your grocery store. Good luck. I hope this might be helpful to you. Thanks for your response. 

    • philsey
      philsey helene51978

      Posted

      Thank you Helene. I think 'normal sleep patterns' is one of the things I frankly haven't got anywhere near sorting in the 16 years since my illness was diagnosed (I had it undiagnosed quite a bit before that). I am beginning to wonder whether the problem is with the word 'normal' and that it needs re-defining for ME sufferers. Changing our expectations about sleep might ease our anxiety.

      Nevertheless may God bless you with answers as you continue to search for what might work for you!

    • helene51978
      helene51978 philsey

      Posted

      Thank you phyilsey, I think one of the hardest things for me to mentally handle is that I put my family out. As much as they try to understand they just don’t.  Even though I was diagnosed by a autoimmune specialist in Boston it’s hard for them to see their old normally active wife and Mother just succumbed by the fatigue and memory issues I have during a flare up. It certainly isn’t a convenient diagnosis. I kinda live in a state of anxiety not being able to meet everyone’s expectations. However, I do believe there is hope. And that’s what I’m going for.  Hope ❤️
    • philsey
      philsey helene51978

      Posted

      I know all about the anguish it causes family. My wife felt she was going mad because I would apparently consent to something (when suffering mentally fog) and then have no recollection of it after. As a man, it meant the end of my marriage because I could not be the support and companion my wife had always had and she was unable to adapt - in the end believing I was faking. So we split up. I can only say, bring your husband to the appointments, buy the relevant books so they can understand the illness, tell them what it feels like to be ill - and hang in there, because not everyone's illness has lasted as long as mine, nor does every family break down.

      In sum: manage their expectations. This will reduce your anxiety and hopefully usher them gently into what will be a new phase of your family life, but not one which will last forever. You never know it might do them them a world of good learning to serve rather than be served. P

  • AndyC77
    AndyC77 helene51978

    Posted

    Hi Helene

    For me i never sleep more than 2 hours at a time but i do get back to sleep right after. I tend to spend 12 hours in bed with a nap latter in the day. I would advise seeing the doc about sleeping pills but every now and then i tend to have a few drinks and some codeine, knocks me out for hours.

    • helene51978
      helene51978 AndyC77

      Posted

      Hi Andy you’re my kinda guy. LOL. Unfortunately alcohol actually makes me feel worse. More aches and pains when I wake up. I am considering trying CBD oil. I have heard amazing reports about it. I’m sorry that you have to spend so much time in bed. Do you have any help from home or your community?  I also wish you the best. I hope to be posting if I find anything that helps. Thank you for your time   

    • AndyC77
      AndyC77 helene51978

      Posted

      I was chatting to a woman that takes CBD oil, she said it was very good. Thanks for your concern, i don't get a lot of help but i have moved back in with my parents because i was forced to go on universal credit which ment i could not afford my rent. I have a charity that want to interview me next week to describe my struggle.

  • DiannaO
    DiannaO helene51978

    Posted

    This is a very tricky issue. I know what you're talking about. Though I've only been diagnosed with CFS 4 years ago, I've had chronic insomnia since my daughter was born which was 32 years ago. It got worse when CFS kicked in. The reason why I say it's really tricky is because sleep can be related to so many different things that merely taking a sleep aid may have little to no affect. And if you're like me, I can't take any medications so sleeping pills are out of the question. Having said that, there are some things that have helped me and some have helped quite dramatically. 

    1) Most important:  Start to unwind at least 2 hours before bedtime (and bedtime should be no later than 10pm). That means don't do anything on a computer or watch anything on tv. Don't have any conversations over the phone, Just read a calming book, do yoga, take a hot bath, etc. Whatever you find relaxing that doesn't include technology or anything stimulating whatsoever.  Your adrenals will thank you for it and the more sleep you get before midnight, the more you'll heal. 

    2) Sublingual Melatonin can be helpful. I just take a low dose, about 1.25 milligrams, as I'm reading in bed and starting to nod off and it definitely helps.

    3) Don't eat anything after 7pm so that digesting a heavy meal doesn't keep you awake. 

    4) Don't drink coffee or anything stimulating. Some natural remedies can be very stimulating so watch out for that.

    5) Meditate during the day. It will help regulate your nervous system and you'll be able to get some rest during the day that will help relieve the awful headachy feeling from not sleeping. Sometimes meditation can be deeper than sleep. I keep a recorder and a set of headphones by my bed so if I can't sleep, I just listen to recorded meditations. Youtube has some great stuff and I find the ASMR (whispered meditations) are very calming.

    6) Avoid crashing. It throws EVERYTHING off. Heart rate monitoring can help you keep yourself from crashing. 

    • helene51978
      helene51978 DiannaO

      Posted

      Thank you DiannaO, I want to try meditation. Most people say they get great results from it, and that’s just in the “real world” of stress. I’ll try taking your other suggestions and putting them to task also. One of my hardest efforts is trying to sleep by 10. I’ve been so tired and unable to sleep during the day, it seems like I get wound up at night and restless. I was just mentioning to some responders that Sleepy Time Tea extra has helped in the past. I kind of forget I have it. That will be my go to tonight hopefully it will help. Thank you for your response. Much appreciated. I hope your days are looking brighter. 
    • philsey
      philsey DiannaO

      Posted

      Hi,

      I am interested in the melatonin product you are using? What is it called? I am in the UK. 

      P

    • DiannaO
      DiannaO philsey

      Posted

      I don't know if they have it in the UK but it's called Source Naturals Sublingual Melatonin and I get the peppermint one. 

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