Have you ever been completely worn out, just want to lie down and sleep, but sleep won’t come? Mind buzzing with a million things, tossing and turning, stress building – no sleep? Crazy as it may seem sleep can be a problem if you have chronic fatigue syndrome (CFS)/Myalgic Encephalomyelitis (ME) and/or Fibromyalgia.
Insomnia is torture! But when you’ve got CFS/ME it feels even more stressful for there is even less chance of you being functional the following day without a good nights sleep. And when you’re not sleeping at night there is a good chance you are sleeping a lot through the day. This pattern does not help recovery. Mind you, if you are in the chronic phase of CFS/ME you may be sleeping a lot both night and day. This will get better over time. Just try to make sure you are getting the right sleep at night at least and start incorporating activity a tiny bit at a time when you can.
My patterns were that I would be down and out for a few weeks and then have a good couple of weeks. I was trying to get to work a couple of days a week during the good weeks but was having difficulty sleeping at night. The anxiety of knowing that if I didn’t get to sleep I would be in no state to work the next day would drive me further awake, until finally I would give in to this fact and read or do some writing.
Sounds that normally wouldn’t have bothered me before CFS/ME now wake me up. Ontop of that I would frequently wake between midnight and 4am with my mind buzzing. Once awake I’d find it difficult to get back to sleep until sunrise. I know there are many others out there who experience this as well – regardless of whether you’ve got CFS/ME or not!
My doctor advised me that I should be getting to bed by 8.30pm and getting around nine hours of sleep a night. Wow, that would be great! So I needed to make some changes to help improve my sleeping patterns which were all over the shop. These are the 10 things that have helped me:
1. Taking natural sleeping tablets to induce and maintain my sleep at night
The first priority for my naturopath was getting on top of my sleep patterns, and she prescribed Redormin – a natural product made of hops and valerian to help improve sleep. Redormin has been really useful. At first I took 2 tabs every night an hour before sleep, now I only take them when my sleeping pattern gets thrown out. I found that taking these natural herbs for sleeping has been great to help kick start my new sleeping pattern.
2. Using ear plugs to cut out background noise that wakes me up
Wearing ear plugs to bed has really helped me to get to sleep and stay asleep. Although they are a bit uncomfortable they really do prevent me from being woken up by barking dogs, screeching bats, cats and possums or noises from the lovely flatmates and neighbours. Yes I live in suburbia! I’m still hoping that one day I’ll be woken up by a Koala but still waiting….. If you have any alternatives to ear plugs (that doesn’t include moving to the country) I’d love to hear them.
3. Satisfying my tummy so it doesn’t wake me up
Sometimes when I have woken up early I have a grumbling tummy and eating food does actually help induce sleep, but this is not a great habit to get into. Instead I’ve started having 4-5 organic prunes and a small hand full of almonds before slipping into bed. These are good for stabilising blood sugar and get me through the night. The prunes are also a healthy option for sweet tooths such as myself!
4. Setting my alarm to wake up at the same time each day
Getting up at a specific time each day has been necessary to set a pattern so my body is tired and ready to sleep at the right time at night. Before doing this I was driven by the time I went to bed and this was so varied that my rising times were also really varied. The first few days are a bit difficult as it is pretty hard to drag yourself out of bed. But I allowed myself to have short naps through the day as I need them.
5. Practicing regular morning meditation and yoga
My morning routine consists of meditation, yoga and breakfast. Having something specific to get out of bed for helps to get me going. Afterwards if I need to I go back to read a book or have a nap. Meditation and yoga are great ways of improving your overall wellbeing and I always feel better after doing them and there is plenty of information out there to indicate that they help improve sleeping patterns. Occassionally I also do them at night before bed.
6. Doing a brain dump
If I really can’t stop my mind from buzzing I’ve also found getting up and spending 5 minutes writing what’s on my mind helps to drop some of my brain baggage. I have to be careful with this and make sure I only do one brain dump, not start a brainstorming session!
7. Balancing activity and rest
I really started to see improvements when I practiced what I call the go-rest-go-rest-go-rest principle. This at times is really difficult for me as I think I’m a little compulsive obsessive and putting tools down to rest when half way through something takes a lot of will power. But when I have get the right rhythm it works really well for me and I feel a sense of achievement while giving my body the rest it needs to get up again for me later.
I’ve found that 9 hours of sleep per night and one or two short naps through the day are great for me. Some days I only need to rest for 30min through the day, other days I need a couple of hours. I try to listen to what my body needs. Remember everyone is different so you will need to experiment to find what works for you.
Yoga and small regular amounts of exercise I believe have also helped improve my sleep and general wellbeing. I started very small doing just a few yoga poses a morning, doing a little more or a little less depending on my energy levels, and with walking I started on 5min three times a week and I’m very slowly increasing it.
8. Limiting the amount and when of TV I watch
I’ve really toned down the amount of TV I watch each day. I use to watch lots of DVDs but now I’ll only spend max. 2 hours in front of the box a day. I also try not to watch TV an hour before I plan to go to sleep. I spend that time doing more relaxing things to get my body prepared for sleep.
9. Incorporating a relaxation hour before bed
I spend the last hour before going to sleep doing relaxing things that start my mind and body winding down. Things I like to do are listening to relaxing music; burning essential oils that are good for anxiety (lavender, patchouli, rosemary); have a sleep tea (chamomile, passionflower); do some meditation or a couple of yoga poses and finally read a few pages of a book. Finally, cuddling my fluffy feline friend who is safe indoors at night keeping me company rather than hunting our native furry friends.
10. Working on ways to release anxiety from my mind and body
And lastly but pretty significantly I’ve found listening to CDs that help release anxiety has given me ways to actively tune my body down and get to sleep. Instead of letting my mind build up my anxiety I am able to use visualisations to let go of anxiety and relax into sleep. This takes constant work and re-listening to the CDs that have helped me, such as the one I’ve recommended by Sarah Eldelman.
I’m so not over the sleeping issues. I’ve just got a lot better handle on it. I have to keep adhering to these strategies all the time and re-adjusting when things get a bit off track.
Do you have any tips on how to improve sleeping patterns for CFS/ME patients? Send me a comment, I’d love to hear from you.
Tags: Balance meditation Recovery reduce anxiety relaxation routine sleep
CFS is indeed challenging and its nice to see that you have found a way to live with it.
I’m now at my wits end 1 year on ambien terrible body pains tonight gonna try Redormin I need help desperate ly
Sorry for the delay in replying Theresa. How are you going now with your sleep?
I have had CFS for approx. 3-4 years, unfortunately it became worse about 18 months ago and has took another nose dive in the last 6 months. I have had a lot of trauma and stress. My main issue is with sleep and I believe if I had been helped with this at the beginning by the medical profession (plus listening to my own body and slowing down and avoiding further stress) I would have recovered. I have been living on an average of 15-20 hours sleep a week and have had periods with days of no sleep at all. I finally gave up work last year and since the decline in the severity of the CFS have gone back to sleeping pills (as I am now having joint pain too) which is at least allowing me some rest . Most people on here seem to sleep many hours (but this sleep is unrefreshing) I wondered if there was anyone who also suffered with insomnia and if this is how the disease first manifested itself? Like Andy the worse I feel the worse I sleep and no matter how tired I am the sleep doesn’t come. Have tried many different approaches and any thoughts would be more than appreciated 🙂
So sorry for the delay Shell. Sleep was definitely tied in significantly with whether I improved or declined. I’m sure you’ve read the blog post on 10 things for sleep. It was a combo of things for me as you can read. Actually I’m up at 4am today. Not with CFS but if I don’t get onto it things can spiral down. So I was refreshing myself by checking out that blog post myself. https://greengirlfightsfatigue.com.au/10-ways-i-improved-my-sleep-to-manage-chronic-fatigue-cfsme/. What have you tried? Has anything started to help?
Good post. I learn something new and challenging
on blogs I stumbleupon every day. It will always be helpful to read articles from other writers and use something from their
websites.
Hwy! I’ve just discovered your website, and I’m thoroughly enjoying reading your posts. Into struggle with sleep often. It’s so frustrating and the irony is the worse my symptoms, often the harder it is for me to sleep. My problem is that I often feel significantly better in the evenings. If in very bad sometimes the 90 mins or so between 10 and 11:30 are the only time I get any relief from the constant brain fog/buzzing in my head, dizziness. Nausea etc. just wondering if you experienced the same symptom relief in the evening?
Hi Andy,
I found it really difficult to get into any routine and I really struggled. I had to get really dedicated to the cause of helping my body sleep. So pretty much starting the wind down a couple of hours before bed, taking the herbal sleeping tablets (Redormin gave me the best results) and reading a book / staying away from the TV. If I couldn’t sleep then I would read or do a few resting yoga poses. I still use my eyemask and earplugs to this day I have got so use to relying on them. For me of course it was the holistic view of recovery I think that helped me break through – the combination of boosting nutrition, graded exercise, assisted herbs, relaxation and sleep management.
Best of luck Andy
Mel
2 things that really help me are taking a bath with epsom salts before bed, and also adding seeds and goji berries to my food.
Nice one! Thanks Simon. I’ve also been taking magnesium before bed – really helps to keep the aches and pains at bay in the morning and helps me sleep well.
I just can’t set an alarm and get up…. I would get a massive migraine and be in bed to sleep it off.
I don’t sleep once up, but may not wake up till midday.
I’m tired all day so don’t recognise when I’m tired in the evening.
I tend to get into creative writing and lose track of time….so up till midnight /2am
going to bed earlier leaves me wide awake and tossing and turning which creates pain…
I do use a relaxation tape …sometimes in works sometimes it doesn’t.
I wouldn’t say I’m an insomniac because I do tend to get 8 hours sleep…. its just at the wrong time of day….
I can’t fall asleep easily and I can’t wake up easily and feel awful when I do.
I have chaged my diet which helps….
Suggestions gratefully recieved
monica
Hi Monica, just answered your other post and sorry, just seeing now that you’ve had a look at my sleep post. I can relate to where your at, just not the migraine side of things, but I was certainly in a similar sleeping pattern and my body was aching and difficult in the morning and I would just rest it off. I did that for a long time and at some point I just knew that I needed to get up in the morning earlier if I was going to be able to get tired at an earlier time, it just wasn’t going to work the other way around (i.e. get to bed earlier first). So I just had to kind of push myself a bit to do that and I’m not always onto it still. But I did do it long enough to find that it worked for me and so if my sleep patterns get out of whack again (which they do….a night on the computer and its swinging out of whack again) then I start to get out of bed earlier again. When I first started I just started setting the alarm for a little bit earlier, and a bit earlier again etc. I also found that yoga really helped the transition as it helped ease some of the aches and pains and seemed to give me some energy to work with.
Just remember to take it real slow. I had to go back to bed several times and slept too much through the day, but I just knew that for me the direction was to try to not sleep too much through the day to get better sleep at night – and over time by reducing the sleeping through the day and getting some discipline around the getting up and going to bed times, and with the aid of my earplugs and sleep tabs I’ve finally made it to a good sleeping pattern.
Good luck with in Monica, just go easy on yourself and take it slow and steady.