Sleep with CFS/ME

Posted , 9 users are following.

Does anyone else suffer from seriously bad sleep problems with this?

Throughout my 15 months with this, i have had severe insomnia or toruble staying to sleep...i sleep between 1 - 7 hours a night, only twice in that time has been 9 hours...mostly its 4 and this is often interrupted...i have such terrible nightmares also.

I have tried every thing under sun... Mitrazapine, zopiclone, temazepam, nytol, melatonin, amitriptyline, counselling, lavender oil, relaxation techniques, sleep hypnosis, valerian...

Out of these melatonin worked the best at giving me consistent 5 hours sleep, but it has now wore off...sleep tabs i have run out of and dont want to keep taking them anyway - as they are addictive and mess you up even more...Im currently weaning off amitriptyline as it has caused me other issues...

What has everyone else done, have i missed something? Perhaps i should stick with something for longer - rather than chopping and changing so much...this for me is my worse symptom and makes everything else so much worse with lack of sleep sad

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11 Replies

  • Posted

    Lack of sleep/problems with sleep is a very common symptom of CFS. Believe, me, you're in good company. Some of the older trycyclic antidepressants can help with sleep, like doxepin and trazadone. Also, have you tried acupuncture or biofeedback? But really, it seems like you're doing everything you can. And with the Internet and Google, you can just search under "sleep problems" and probably get a slew of possibilities.
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  • Posted

    Sleep was always one of my biggest problems as without it you just cant functionally even without the added problems that come with CFS. After strugling for 8 years i finally went to the doctors and he put me on a low dose of Amitriptyline.. It takes about 6 - 8 weeks before you really start to see results then usually at about the 3 months mark its at its best.. you only want a tiny dose of 10mg to start off with.  CFS means we have alot of issues with medication so you always need to start on the smallest does possible.  It takes time so you need to stick at it. Ive been on it for 4 years now, i had to up the does last year after a bad relapse left me with chronic nerve pain in my skin.  When i double the does for the first 10 days i couldnt sleep at all.. it was so wierd.. but then after 2 weeks things returned to normal and after 3 months i was getting some relief from the nerve pain as well as the help with the sleep.  Its been a life saver for me.. Ive gone from someone who often couldnt sleep more than a few hours and even went 2 -3 days without sleeping more than the odd hour. Now i often sleep 6 -7 hours right through. I still get periods where im awake ever few hours but i still get anough rest to function. The benefit of sleep also means you can cope with life much better and also makes the other syptoms of CFS much less of an issue. GIve it time.. at least 3 months .. have a bedtime routine.. Remove all caffine from your diet!! thats a big one... milky drink before bed etc.. 
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  • Posted

    Only thing that helps me sleep when I can't is relaxation. I was given a cd of relaxation techniques by my ME specialist, which I ripped and put on my phone so I can listen to it when every I need to. If you can get a cd or find videos on youtube or something for diaphramatic breathing and deep relaxation or meditation I hope it will help you!
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  • Posted

    Sorry, I just read that you'd tried relaxation, didn't work for me right away either, gotta get your body to learn how to relax, it stills the mind and helps me drift off quite easily!

    A good sleep routine helps as well, some tips I've picked up for sleep hygiene are:

    no screens for 2 hours before you go to bed, so no phone, no computer screens.

    Take any tablets you need or do the relaxation, or both!

    Keep your bed only for sleeping, no working on your bed, watching tv and so on.

    Have a set bed time.

    And don't allow yourself to sleep past 8:30 each morning.

    Hope those things help a bit, write them out and pin in up by your bed to remind you if you can't remember to do it all.

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    • Posted

      Hi BethyLinde,

      Great points!

      I have been practising most of what you recommend for about 4 weeks now and, (apart from my Basset barking twice a night!!, she is going through a needy time, ) I have been successful and just slide off to sleep as long as I have done a little walking during the day, 10 minutes.

      I can' t do much more than that....

      It is magical but I do keep encouraging positive mind thoughts daily.

      It works for me so I keep going.....I think the abdominal breathing is wonderful. I would add that if you follow the pattern....Breathe in for the count of 7, breathe out quickly for 5, breathe in for 7 then beathe out slowly for 11. It's the 11 that's the hardest but once you can relax and get into it, you learn to relax your epiglotis at the back of your throat to just keep emptying your lungs. it's really weird.

      When I'm on my own, I also practice Breathing with sounds like Sh....

      I think if you spend a good 10 minutes on it, it takes you into a truly relaxed state of mind.

      I struggled in the beginning because the one thing that stands out for me and CFS/ME is that my brain works in overdrive almost all of the time whilst my body is malfunctioning !!! The two don't mix as you know.

      I feel like a reel to reel machine that has got out of control, just truning and turning.....going faster and faster.....

      Hope you are well....or at least, coping with your issues.

      Best wishes,

      Jinny x

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  • Posted

    hi jacquie

    i had exactly the same problem as you and the lack of sleep was totally debilitating making me anxious all the time due to psychophysiologic insomnia( look it up!) originally I was on mirtazapine which helped but I put on 5 stone whilst on them since 2009 (1 stone a year). then after my own research I came across sertraline and trazodone which respectively helped with the anxiety and the insomnia so I changed from mirtazapine and I now have lost 2 stone in 2 months and regularly sleep for between 

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  • Posted

    sorry pressed wrong button

    now I sleep for between 7-9 hours a night and feel incredible and function like a normal person I presume (I had been so long without sleep I not sure what normal was anymore!)

    trazodone dose 150mg (this can safely go upto 400 mg I have read) 

    sertraline 100mg

    i hope all this helps cos I was in that dark place you are in for many many years and only now after my own research and demanding to be heard have I come back into the world of the day. 

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  • Posted

    I to have sleep problems. I rarely get a good nights sleep. This all started when my youngest was born and did not sleep much for 4 and a half year.(thirty years ago I just get up and do thnings until I think I will be able to go to sleep again. I do not like taking pills of any sort as they usually have bad side effects, and I have enough to cope with without dealing with those as well.


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