FIBROMYALGIA AND SLEEP Something to t... - Fibromyalgia Acti...

Fibromyalgia Action UK

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FIBROMYALGIA AND SLEEP Something to take a look at :)

42 Replies

HI EVERYONE

Emma's poll got me thinking about how we all strive for a good nights sleep and the answers show a varing number of differences between us all. This link discusses how to deal with sleep problems and Fibromylgia.

I hope that some of you find it useful :)

webmd.boots.com/pain-manage...

WebMD Medical Reference

Medically Reviewed by Dr Rob Hicks on February 28, 2014

Healing Fluffies filled with energy and strength

:) xxxsianxxx :)

Read more about...
42 Replies
Fibrofoggiest profile image
Fibrofoggiest

Morning sian :-) Thanks for that link, very interesting indeed and the next article to do with fibro and depression was very informative, so thank you for posting this, it always helps to see things in black and white :-)

How are you doing this morning? I'm sending positive vibes your way :-)

Foggy x

in reply to Fibrofoggiest

Glad you found both articles of interest Foggy :)

It can be both educational and a relief sometimes :)

xx you're most welcome xx

TheAuthor profile image
TheAuthor

Hi zeb73

I sincerely hope that you are feeling as well as you possibly can be today? Thank you so much for this, it is a really interesting write up.

I have trouble getting to sleep because of the pain, I always feel uncomfortable. I cannot lay on my back because of my recent fall and operation. However, I think the worst thing is how I feel when I wake up. Nearly everyday is the same as my quality of sleep is non-existent!

Take care my friend

Ken x

Fibrofoggiest profile image
Fibrofoggiest in reply to TheAuthor

Same here Ken, I think the quality of sleep is what leaves us so drained and it is cumulative too :o

Just a thought, are you able to prop yourself into a more comfortable position with pillows? A friend bought a body pillow after a back operation and it helped her a lot.

Foggy x

TheAuthor profile image
TheAuthor in reply to Fibrofoggiest

I have often wondered if it is the lack of quality sleep that leads to Fibro fog? As I can feel so drained and tired as a result?

How are you today my friend?

Ken x

in reply to TheAuthor

and yes also :)

I have always assumed them to be connected as lack of sleep can cause such symptoms.

:) xxxsianxxx :)

TheAuthor profile image
TheAuthor in reply to Fibrofoggiest

I have to sleep on my left side at the moment with my right leg slightly elevated! It really isn't very comfortable xxx

in reply to TheAuthor

That sounds like exercise :o

I have to be propped up because I cannot lie flat or my back gives me no end of issues and at the moment have a pillow between my knees :( well let's hope it's only for a short while and that we all feel better soon :D xx

lulu618 profile image
lulu618 in reply to Fibrofoggiest

Hi I use a lot of bean bag pillows. This way I can squeeze them at different parts of my body. Sounds crazy but I would never get comfortable with out them. BIG help. Hope this helps someone with getting comfortable.

Fibrofoggiest profile image
Fibrofoggiest in reply to lulu618

The most comfortable thing in my cottage is my beanbag, it moulds to me and also gives warmth to my sore back......the best thing apart from a quality memory foam mattress, I would find it hard to pick between the two. Glad you have found the beanbag pillows :-)

Foggy x

in reply to TheAuthor

same here ! it's what I'm like when I wake up

........................today **** to be precise LOL ;)

Lucyhobbit profile image
Lucyhobbit

Some interesting ideas there, I find that 'white noise' helps me to fall asleep as it seems to stop my brain from whirring too fast. I have an electric fan on a 1 hour timer and no matter what the temperature is, I have the fan to help me drift off (my poor darling partner has learnt to live with it). I can sleep without it - but it often takes longer to nod off.

Fibrofoggiest profile image
Fibrofoggiest in reply to Lucyhobbit

Hi Lucy I have a friend who has really bad tinnitus and she is like you, she has to have a fan going in the room to help her get to sleep, but for her if she doesn't have it going she really can't sleep.

Foggy x

TheAuthor profile image
TheAuthor in reply to Lucyhobbit

I can really relate to that! I have a fan and an electric blow heater, both help me drift off if I am having problems!

All my hopes and dreams for you

Ken x

Since being on Amtriptiline I either go out cold or feel half awake all night . Either way I always wake up feeling like death warmed up and tired all day. Sue

jillylin profile image
jillylin

Thanks for the link Sian. I ended up looking at all the links involved, not just the one about sleep.

Hugs

Jillyxx

in reply to jillylin

Hi Jilly I'm pleased you found the link useful and informative, I do like to try and help with useful info where I can. I actually didn't twig about it being liked to other sections but that's a bonus I suppose and full of some interesting reading, I agree :) xx

I'll have a look at the link. I find I sleep too much overall but that because of needing the loo several times a night (due to a vaginal prolapse) and the pain and discomfort caused by fibro my sleep quality is poor I think as I often wake up feeling exhausted. There is a known link between fibro and sleep, which my consultant spoke about when I was diagnosed. He linked it to trauma and stress which generally disturbs sleep. Also there is a known link between depression, trauma and fibro, linking to the immune system and effects of prolonged stress on neurotransmitters. Suex

in reply to

Hi secondhandrose I thought you may be interested in this 'post from the past' by one of our volunteers, Sandra it gives a link to a news article Sleep 'cleans' the brain of toxins BBC news 17 October 2013

healthunlocked.com/fibroact...

Let us know what you think?

:) xxxsianxxx :)

in reply to

yes, thanks I will take a look though I studied neuropsychology and sleep so have some sense of that already. Thanks though.xx

in reply to

You're welcome :)

TheAuthor profile image
TheAuthor in reply to

Hi secondhandrose

I sincerely hope that you are feeling as well as you possibly can be today? I presumed there was a link between sleep and Fibro, I have always suspected it. I have no sleep pattern whatsoever. I can go several days without ever sleeping and then crash! I am out like a light for up to 12 or 14 hours. When I do wake up I feel like I have never been to sleep, as the quality of it is so poor.

Take care

Ken x

in reply to TheAuthor

Thanks Ken. x

trayb1301 profile image
trayb1301

They do say that sleep disturbances can contribute toward fibro. I haven't had a decent night sleep for approx 5 yrs. I have a 4 yr old who has yet to master the art of sleeping through so just as I am nodding off he wakes up!!

TheAuthor profile image
TheAuthor in reply to trayb1301

Hi trayb1301

I sincerely hope that you are feeling as well as you can be today? I am so sorry that your sleep pattern is being disturb but I am sure your 'little one' will eventually settle down into a pattern, especially when they start school as it will wear them out. Mine use to fall asleep straight away once they started school.

All my hopes and dreams for you

Ken x

in reply to trayb1301

Hi there trayb

I personally believe that sleep disturbances contribute to many illnesses as well as Fibro and like you have battled the sleep cycle for years. I have found that if I can stick to a set routine it makes it easier to manage and control but having a child would make that a bit more complex for you as you'd have to factor in your 4yr olds sleep pattern.

I wondered if you've tried any relaxation techniques or complementary therapies to help you get to sleep or herbal remedies. Of course you should speak to your GP about anything new you try and also explain your sleep issues as there are a range of medicines and solutions to try out and see if they work for you.

This link is to a factsheet pointing out the organisations which can provide more information if you would to explore complementary therapies,

fibroaction.org/Documents/F...

I hope the information was useful for you :)

:) xxxsianxxx :)

Hi Jessam

I thought you may be interested in this article I found in the research section of fibroaction.org - Sleep disturbances in fibromyalgia syndrome: Relationship to pain and depression, from researchers at Indiana University and Purdue University, Indianapolis, USA, was e-published ahead of print in the journal Arthritis and Rheumatism.

fibroaction.org/Articles/Sl...

I had never read this before tonight and its cheered me up :) For years and years no-one would believe that I was depressed because of the pain I was in, those times were awful and thankfully, now, long gone!!

What do you think?

Looking forward to hearing your thoughts :)

:) xxxsianxxx :)

TheAuthor profile image
TheAuthor in reply to

Thank you so much for pasting this link on zeb73, I had never read this before either. It is very interesting.

Take care

Ken x

moo196 profile image
moo196

Good article - thanks . May use it to try to explain to family / friends my exact point about sleep ie I can "sleep" for 8-9 hours but wake up as shattered as if I had not been in bed at all.

Had a spate of noisy neighbour issues a couple of years ago which I now think didn't help my condition ( and possibly a cause of ??) as I was constantly being woken up about an hour/ hour and half into my sleep ie midnight or one am. They have improved a bit ( though sometimes noisy and this morning it was 5.30 am wake up "call" )

Trying to do all the right sleep hygiene things but not helping much so far..... still tired as ever.

Moo

in reply to moo196

Hey moo :)

I am glad that you liked the article and think it could be used to help communicate your Fibro to your family. Communicating pain and sleep is no easy task is it?

I know it took ages for my OH to realise how much of my illness he was misunderstanding until I went for a DWP review and took all my paperwork regarding consultants, medications appointments and then listened to myself and the nurse discuss everything for about an hour. When we came out he was quiet for days until he admitted that he felt guilty because it hadn't registered with him how things were affecting me :)

After that came the transference of guilt to me as I should have communicated it better and realised how difficult it would be for him to understand as he wasn't experiencing the illness and it's effects................. it's a catch 22 but is essential to our care and management of the illness so, we persevere with it :)

Noisy neighbours are a nuisance and there are ways of dealing with it now involving reporting repeat offenders to the local council where the noise team may investigate the case. I hope it doesn't remain to be a persistent problem.

:) xxxsianxxx :)

Thanks all for these interesting posts on sleep. I have had problems with getting to sleep and staying asleep and waking every couple of hours all night for a few years now. Funnily enough, I went and talked about it to my doctor before I even started putting two and two together with pain and loss of sleep and long before I had a diagnosis of fibro. In retrospect it makes perfect sense. The doctor was not at all sympathetic or helpful. I really wish GPs would actually listen to what their patients say and not dismiss us all the time. Now it's obvious that my trouble sleeping was related to the onset of my fibro. I have found it MUCH easier to get a good night's sleep since I've been on amitryptaline - so much so that I can't sleep at all without it (not sure that's a good thing) - and gabapentin. Both make me drowsy. I also wear wax ear plugs to stop my kids or husband waking me and I'd recommend them. Also speak to your family to make them aware of how much you need an undisturbed sleep. My husband is so good now. There are some days I don't get up with the family at all if I've had a bad night or need more rest and he will just leave me and creep around the dark room to find his own clothes etc. So, buy some earplugs and train your husband / wife / family! :) A x P.S. I also have bath or shower at night instead of morning as this relaxes me and gives me less to do in the mornings meaning I can crawl from bed to work in a shorter time! I recommend Jason lavender products. They're expensive but delicious. I also put lavender perfume on at night. Not much good for the men among us but fine for the women.

in reply to

Hi there Apple

It sounds like you're well on the way to exploring differing techniques to help you sleep what would you say was the most effective set of things you do to get off to sleep?

I have to empty my head first :) which I do by playing a game like mahjong as it doesn't involve anything stressful, and I take 50-100mg standard tramadol and 2 paracetamol before that. After a hour I like to do PMR or guided imagery to float off :) Hot choc is optional :D

I get approx 3-5 to 4 hours sleep from that and wake feeling ok but have to snooze in the afternoon.

My doc has suggested upping my pregabalin at night time too which is a first to try this evening :o

I agree with you about helping your family to understand as I've said to Moo above as I personally think it lessens some of stress.

:) xxxsianxxx :)

fenbadger profile image
fenbadger

There seems to be a link between betting one thing and getting others. In short. Stress causes all sorts of things to flare - anxiety, fibro, depression insomnia, then insomnia can cause fog like symptoms- it did for me before I knew I have fibro. Without going on and on that's a framework of how I see it.

I try loads of tactics to wind down to sleep.

Anyone fancy a trip out for a cream tea Sunday?

in reply to fenbadger

Completely Kettle :D stress is 'claused' as being one of the biggest killers because of the strain it has on the human body, which is why I advocate relaxation................. so cream tea on Sunday would be lovely thank you, where are we going?

POT :) :) :)

fenbadger profile image
fenbadger in reply to

I hadn't really decided. Cornwall, Devon or The Lobster POT on Portland?

in reply to fenbadger

There was me thinking it was all planned :P

POLLY >>>> put the kettle on!!

got to have a brew if planning something :D :D :D

fenbadger profile image
fenbadger in reply to

Plan is a four lettered word :P

fenbadger profile image
fenbadger in reply to

The one I can't get to the bottom of is when we already know that some folks still invent their own even if they already have too much :(

in reply to fenbadger

Huh? sorry too cryptic :o

fenbadger profile image
fenbadger in reply to

Still invent their own Stress. I work with a guy who's had 9 months off in the last 2 years with stress and already had a history when he joined us. He gets wound up about the stupidest little things and can't plan or organise. I know that's not everyone's forte but he wastes shed loads of energy. My boss will say "take key no 9" and that's enough for me to know what to do for the shift. For the other guy he has to have the instructions repeated, he then repeats them back and walks miles aimlessly because the poor man's so unsure of himself. It's a lot like that quiz on time management the other day He's had loads of counselling and we have to admit he just can't cope with things out of the ordinary. It really shows when someone who has little sympathy or empathy loses their rag with him :)

in reply to fenbadger

I understand that all too well from training people in housekeeping when I'd send the the new girls, usually the young ones, back to re-do things.......... like toilets.

'I don't like cleaning toilets' would always be the reply and moan about working past their finish time :o It's a housekeeping job, cleaning toilets is of priority to the job!!! even we had targets to meet, one of them was to keep customer complaints to a minimum!!

fenbadger profile image
fenbadger in reply to

What ever happened to "the customer is always right"? :)

Did you find they expect to spend their time drinking the client's tea and gossiping?

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