Sleep with CFS/ME

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.

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.. 

I have serious sleep issues too. It makes it hard to cope when you do get up. Just no energy or appetite.

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!

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.

Hi you are lucky to get that much sleep, I manage 1/2 hours only. Some nights I ame awake all night...

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 

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. 

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.

Alison.