Sleep problems with post viral fatigue / ME / CFS

There are loads of members suffering with post viral fatigue / ME / CFS – how is it affecting your sleep?

Posted 20 May 2012 at 1:15 PM
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  • Sleepio Member

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    in reply to Sleepio Member
    Graduate

    Fantastic site and yet again you have been so helpful, I am going to digest (excuse the pun) the site later and look at my diet and one thing does tally, I have been piling on the weight lately, looks like a beer belly and I am tee total!!
    Thanks for the Helpful comment…......Andy

  • Sleepio Member

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    Graduate

    Now that I've identified and admitted that I have done too much at various times over the summer, I can see where I sometimes am tired but wired, and wake in the small hours. I'm also identifying how I incite brain fog by working on a difficult soduku and feeling I need to sleep. When I can't do that, I know I've a definite ME/CFS symptom.
    Drat!

    But this to will pass if I am careful and make sure I get my flat rests. Must make a carrying case with shoulder strap for my yoga mat. Now is are the old pair of jeans?

  • Sleepio Member

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    in reply to Sleepio Member
    Graduate

    funny you should say tired but wired I am reading a book that is called exactly that the Author is Dr Nerina Ramlakhan, Yes I think you are right anyone with CFS/ME/FMS all need to look at pacing ourselves, have tried the flat rests and for me it works
    Thanks as usual….Andy

    PS got the book from the local library .

  • Sleepio Member

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    Graduate

    The best set of comments I've read about improving from this dratted illness.

    http://drlapp.com/ask-the-doctor/what-are-the-most-important-things-to-remember-about-cfs-fm/

    I must do much better with both my sleep and taking better care of myself..

  • Sleepio Member

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    Graduate

    This is a new perception that I have recently developed. I wonder if it is appropriate to ohers:

    I reckon that when I am in what I call a flare, I'm often still in touch with my body. When I have really overdone it, and am in for “the duration” then I seem to somehow trigger a level of adrenaline, which masks my ability to sense what my body needs. This makes it very easy to push through and unwittingly make things even worse.

    It has taken me a long time to realize that this is what is happening in and to my body. Now I know I have to make sure that I follow my rules, as I am deaf to what my body is whispering. No wonder it is not difficult for me to cause a flare or relapse now.

  • Sleepio Member

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    Session 5

    Hi everyone. Could I ask those of you who are also dealing with CFS/ME how they manage with the sleep restriction phase of this course? My sleep window is set for 8 hours. I usually sleep for about 10 hours a night – it came up with the 8 hour average because of several insomniac nights. I find I need at least 10 hours to feel reasonably functional during the day and I'm concerned that consistently getting only 8 is going to worsen my health.

  • Sleepio Member

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    in reply to Sleepio Member
    Graduate

    Sorry did reply to you on the other forum about FMS it was Suella and not Stella
    my mistake , please accept my apologies
    Andy

  • Sleepio Member

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    Graduate

    Hello mesopelagic,
    Here is a post I made on another topic
    Suella

    “I’m a graduate of the Sleepio course and when starting made it clear that I have a chronic illness of ME/CFS. I feel I am gradually improving, but still need to follow the resting protocol that has been so successful for me so far. I explained that to an expert who told me to follow my medical advice and adopt the Sleepio techniques around this. I needed to go against the Sleepio recommendation of not using my bed for anything other than sleep, and not napping

    Therefore I do 5minutes + flat on my back rests whenever I feel the need which may be 1-2 or more times a day. I also have an hour’s rest in which I may lie flat and in the past I may have slept on a regular basis. My 5 miute flat on my back rests seem to take a load off my heart, and with meditation are profoundly restorative. My body tells me when I have had enough and I can get up and do much more than if I had tried to power through to finish tasks etc.

    It may be that because I am getting improved sleep I no longer need to nap hardly at all which is very gratifying if true.

    So Sleepio was prepared to allow me to work within my limits. I am grateful for their flexibility, as the skills I have learned with Sleepio are supporting improvements to my health.”

    On further thoughts I'm still not sure why the flat rests are so prfoundlly useful for me. I have had to experiment with a very thin pillow to get my head and neck at the right angle. It may be that this is the “still point” that some people find useful. Don't know.

    I have no heart problems at all, but can't think of anything else that is majorly helped by the flat rests the way it seems to.

    I learned about the flat rests from Bruce Campbell who runs an extremely useful site for people with ME/CFS. He had recovered from his CFS/ME using self-help techniques and he has taught many thousands of people on his free and not for profit courses. I was nearly housebound, pushing and crashing, and am now back at college part time. taking other classes and being chairman of a 60 member Embroiderers Guild branch. I credit the techniques and knowledge that I gained from Bruce's website and courses. Have a look at www.cfidsselfhelp.org and see what you think.

  • Sleepio Member

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    Session 5

    Thank you for such a comprehensive response, Suella.

    I've seen Bruce Campbell's site and am trying to put his recommendations in place.

    Can I ask how you adapted the Sleepio course to your needs? I mean, the site's interface itself is restrictive. I intend to lengthen my sleep window, as 8 hours is clearly not enough for me, but I see no way to change the sleep window. My understanding is that if you do not keep to the sleep window they set for you, it won't let you progress to the next stage.

  • Sleepio Member

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    Graduate

    I have benefitted from being involved with Sleepio during the last year, but I now feel that I need to shrink my sleep situation down to a smaller part of my life and move on. My DPSD was connected with ME, and I had been trying for a number of years to obtain a sleep clinic referral. ME was until recent NICE guidelines not taken very seriously and I didn't get anywhere with this. As I am now over state retirement age my wish to return to work is solely my problem to sort out, as society is paying me a pension and does not expect to provide me with a job or state benefits, or probably to spend money on investigating my health when I am not contributing to the GNP. ME is very tiring and I need to stop battling and move on to make what I can of the rest of my life.

    I have greatly appreciated the support and help of the Sleepio team and members of the community, I felt understood and I hope that the small contributions I have been able to make were of some help both to individuals and the research programme in some way. I found the CBT programme useful up to a point, but my circadian rhythm keeps breaking through and I will continue to arrange my life around it. I haven't found mainstream drugs helpful as they dope me but still don't knock me out, I'll carry on with the herbal medicine and fitting my life around my sleep pattern. If other people want to misjudge or criticise my sleeping hours that's their problem. Halleluiah! A good breakthrough for me.

    Thanks to you all for your support over the last year, and my very best wishes to the community for your future sleep improvement and for the team in the great work you are doing.

  • Sleepio Member

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    in reply to Sleepio Member
    Graduate

    Hello Suella,
    Thanks for the message. Interesting that lying flat on your back helps. I too find sleeping with a super thin pillow helps a great deal.

    I have found in the past with CFS that regular breaks of a couple or 5 mins through out the day helps to prevent me from over doing it on any task i might become engrossed in. Trying to get out of the 'boom and bust' cycle of energy expenditure.

    Sleep Restriction has been incredibly challenging with CFS. I was becoming intensely drowsy and nodding off from 3-4 hrs before bed time. I imagine this is since i have lost 3-4 hours of time-in-bed. Some parts of the day are very challenging to stay awake. But i find if it is affecting my mood to an extreme degree, a 15 – 20 min nap seems to help, even if it is very hard to wake yourself up again!

    Worried that i will reset the 'homeostatic mechanisms' (is that he right term?) which might affect my sleep later in the day. So try where ever possible not to nap, but sometimes it is impossible to stay awake, or i fall asleep without meaning to.

    Hope Sleep Restriction will start to help :)

  • Sleepio Member

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    Graduate

    I am just at the end of week 3 and have found I have had to alter my sleep reduction to be able to cope with the lack of sleep in addition to the fatigue I have with MS. Does anyone else in the community have MS and how are you coping?

  • Sleepio Member

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    in reply to Sleepio Member
    Graduate

    Hi Suella,

    Going horizontal makes it easier for your heart to get blood to your brain, which makes you feel better. Poor cardiac output is a documented feature of CFS.

    If you web search for “sarah myhill” and “CFS is low cardiac output secondary to mitochondrial malfunction” you can learn more about.

  • Sleepio Member

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    Graduate

    Thank you for this.

    Sarah is brilliant I reckon. I can't remember this comment in her online book so I'll have a look.

    It is very peculiar that I have normal blood pressure on standing up and for a few minutes afterwards. I do need to move around a bit after a few minutes or find I go slightly woozy and need to continue the movement/walking etc.

    I may well have a lower amount of blood circulating. I've increased my electrolites accordinigly.

    I don't have POTS or Orthostatic Intolerance symptoms. I do wonder about Ramsay's disease (Dr. Les Simpson) with the occasional temporary inability of some red blood cells to curl up small enough to go in capillaries etc.

    Thanks again. Much appreciated.

  • Sleepio Member

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    Graduate

    Hi Everyone,

    I would like to share my experience to try and help.

    I had a stressful job since 2011 and got mild CFS in 2013 following a horrible cycle of stress, heavy drinking and lots of virus colds. A lot of the time it felt like I was really busy but not doing anything I wanted to be doing. Since then I have recovered ok thanks to graded exercise but there were remaining symptoms as of early 2015, namely poor unrefreshing sleep (waking up feeling wide awake first thing in the morning and wrecked) and alcohol intolerance. My doctor recommended the sleepio programme.

    My insights are as follows:

    The most helpful parts of the course so far (week 5) have been the breathing and muscle tensing/relaxing in bed prior to going to sleep, and negative thought checking. The former I just find a very effective way to relax while lying in bed. The latter my experience has been exactly as experts say – it takes time for checking your negative thoughts (via the grid approach) to become a habit but over time it genuinely does become a habit. It has been this more than anything else that has shifted the pie chart of my mental experience from 100% negative over time to a much better place.

    In addition I have given up alcohol and stopped going 'out' at weekends (I say no to parties all the time!).

    I think I have made several insights regarding my life which range from the probably medically accurate to the 'interesting but also important'. If I look back over time I don't think my thinking patterns have been entirely helpful. I have tended to discount the value of my successes to zero – perhaps saying they are only what I should expect of myself. And as for my passions I have approached them in a way of either super-excitement (at the time) or frustration (at other times) that I could not pursue them all the time. What I think I have learnt is that it's not really possible to do your job all day during the week and go home and expect to just care for other people. You have to care about yourself, believe in that job and let other people care for you if you are going to be tired and satisfied at the end of the day. Indeed if you look up Fatigue in the Penguin Medical Encyclopaedia of 1975 then you will read about how satisfaction is essential to healthy tiredness (have we lost this common sense?!).

    As for the weekend I actually think maybe my body never really did have the physiology so as to be able to drink frequently and work hard the rest of the time – and that's not really a problem at all. I think I transitioned from the world of university where heavy drinking was in reality broken up with a fair amount of chilling out time to the world of work where I put pressures on myself (without celebrating any outcomes of that) but expected to keep up the drinking. I think if you look back to history then people excluding themselves from society or similar because of 'nerves' was not unusual. Again, maybe we have lost this knowledge and approach (as an aside I don't think being ill is abnormal either).

    But perhaps the more interesting point about the weekend is that just relaxing and doing what you fancy at the weekend is actually really nice. Maybe there is a part of my subconscious that thinks going for a huge bike ride at the weekend is kind of a bit pointless therefore rejects the idea of it! (could possibly say the same thing about the parties!). What I really enjoy is going for walks surrounded by the beauty of nature which I find extremely relaxing. I'm getting into bird watching. I like lying in front of a log fire with my dog as well.

    But in summary the sleepio course combined with the other things I mention have definitely contributed to more refreshing sleep. On some nights now I definitely do wake up with that 'oo what a lovely night's sleep' feeling – which is great! I'm still not drinking alcohol or doing large amounts of exercise but the recovery is good so I'm just going to keep doing exactly the same thing… which means just relaxing and doing the things I do, NOT getting all excited and going hell for leather at whatever it is all over again. To be honest a relaxed and open-minded mindset doesn't seem to have any downsides at all (eg. reduced creativity). That is what I've learned – to change I guess.

    Hope that helps some people. Any questions fire away!

  • Sleepio Member

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    Graduate

    I attended the Sleep Clinic at John Radcliffe Hospital back in February and it was suggested that I may be suffering from Chronic Fatigue, I’ve done some basic research I don’t really understand CFS and why it’s affecting my sleep. Surely if my body’s as tired as it is then it would jump at the chance to get some rest!

    Does anyone else suffer from CFS that is affecting their sleep, how do you cope?

  • Sleepio Member

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    Graduate

    Does anyone have any experience with CFS and sleep they don’t mind sharing?

    During a recent visit to the sleep clinic it was suggested that I may have CFS and this would need to be investigated further, I’m a bit confused why this would affect my sleep as surely if my body is fatigued then I should have no issues with sleep (I’m guessing it doesn’t work like that though)!

  • Sleepio Member

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    Graduate

    Hello, my first time on here, and I want to speak up for the CFS/ME folk like me who can't sleep for hours in the day or night! My sleep has been a challenge since I got clean from using wet and dry drugs 15 years ago. I was diagnosed with CFS in 2008, and am now trying this Sleepio as part of a sleep clinical trial, nothing to do with CFS. Thanks

  • Sleepio Member

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    in reply to Sleepio Member
    Graduate

    There have been several members here with CFS, so you will be able to find some posts of interest in the library and discussion topics. Good luck with the course.

  • Sleepio Member

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    Session 5

    Does anyone suffer from m.e and insomnia? I am in the midst of a relapse and could do with some support.

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