F..a..t..i..g..u..e..d!

ellierose

Just wanted to ask how other people cope with the tiredness ALL the time?

No matter how much sleep I get - or don't get - I feel just as bad when I wake up in the morning as when I went to bed!

Also, how do you manage the days when you just want it all to be better...but it only seems to be getting worse?

Thanks

skezier

Hi Ellie,

I am sorry your having the horrible fatigue. I have huge amounts of it and its so hard to keep awake.

With me I find I fall asleep (as long as its safe to do so) and that doesn't last long so you can soon go back to doing what you need. Have no idea how you beat it and have been trying to for a while.

Its the waking up as tired as you turned in as well thing I hate but it will pass flower so hang in there. Nice to meet you by the way. Cris x

constable

Hi Ellie,

I'm the same, I quite often have to go to bed I feel so tired (during the day) I did that yesterday. And your right no matter how much you sleep you wake up feeling exhausted as when you went to sleep, and I would like to know why as well. So if you find out before me let me know would you. My husband reckons that it's the extra work our bodies have to do even just pottering around the house ect and also because of the pain we're always in just wears us out. I dont know.

Karen xx

julie47

Hi ellie
I am writing this with half closed eyes and I have only been up an hour and half.
I often get tired during the day too. I then have to sit and shut my eyes , even if it is only 10mins.
Just to recharge my batteries.
I have had ra for 23 years so I have learnt to accept it.(atlast)

Hope you feel ok today
Juliepf x

dreamdaisy

The tiredness is a constant factor and no, nothing makes it go away. We could sleep for England and still wake up feeling tired.

I think one of the major problems is that what sleep we garner is not refreshing in any way. If I want to turn over in bed I have to wake up - I marvel at Mr DD, turning over whilst snoring, I wish I could do the two together. I also have a real problem with night sweats (thanks to the humira) so they wake me regularly. Another problem is that we may think we are 'sleeping' but things are still twanging away so that sleep is not restful or relaxing. The pain dullers only take the edge off, nothing more.

Over the years I have learned that if I am nodding off the best thing to do is to give in to it and have a nap. If there is a time constraint then I set an alarm - and I often find that the daytime sleeps are better than the night ones. Right (yawn) it's time for another cuppa (yawn) and a snooze. DD

keith1971

Hi,

For me the tiredness & fatigue came before any other symptoms....about six months in fact.

It's never gone away & like the others say, even with 10 hours sleep I still wake up tired....and in pain!

Personally I'd like to rewind the clock 5 years...........

:roll:

frogmorton

Ellie

ELLIE!!!!

wake up!!

When l get a really exhausted spell l set the alarm and l sleep for an hour or two. I do find it hard as l am an acive person, but the consequences of falling asleep all over the place are worse!!!

Love

Toni xx

nanasue

Hi Ellie, I've had the same problem as well, I think we all have at one time or another to a certain degree, it seems to be part of this blasted illness and it's very frustrating as it means you can't plan ahead for any kind of socializing. Recently I have found something that helps somewhat, I bought a light box (usually used for winter depression) and since using it I've found I have better sleep and don't feel so tired in the daytime, altough I have dropped off a few times. It seems to give me a bit more energy, of course it could be totally psychological, but even if it is, who cares? it works!!!!! Good luck,

Sue x

ellierose

Thanks for all your replies and suggestions

Sometimes it's nice to hear that you're not the only one. I wonder from time to time whether it is just me being really lame and I start to feel cross at myself for being ill :oops:

Liking the sound of a light box though...just because!!!

xx

P.S. Keith - I must admit to feeling like a fraction of the person I used to be too (on my bad days anyway). Sometimes I feel too tired to want to see or speak to anyone. Except for on forums evidently! Or does that just mean I am antisocial?!!

keith1971

Yep, you're probably just horribly anti-social Ellie!

Everything about this nasty disease is hard to get your head around isn't it? I'm hoping that bit gets better with time.

x

skezier

Hi Ellie,

Hey if your anti social i hate to think what i am Hope you get a decent night and tomorrow the fatigue will back off for a while. Cris x

Poppyg1rl

Hi Ellie,
The fatigue is crushing sometimes, I don't know about you but, I can't really explain to my hubby or kids just what its like, just utter exhaustion, I feel I could fall asleep standing up!
The only way I get through it is to go with the flow, if you can sleep, sleep! Don't feel guilty, our bodies take quite a battering battling with 'Arfur' and that's what causes the fatigue.
I agree with you it's nice to know you're not the only one suffering this. But I firmly believe it will get better! ever the optimist me!! :P
Hugs xxx

magenta

Hi,
I'm struggling with the fatigue at the moment too. I'm always knackered but lately it's been really hard to get up in the morning. I keep thinking, it'll get better when I'm at work etc.. I find I have to keep going, as soon as I sit down, that's it-can't get back up! This just means I've burnt myself out again-can't win :roll:
Hope you get some rest,
Magenta x

frogmorton

ellierose wrote:

Thanks for all your replies and suggestions

P.S.. Sometimes I feel too tired to want to see or speak to anyone. Except for on forums evidently! Or does that just mean I am antisocial?!!

I SO get this one there are times when l have to REALLY reallly make the effort to actually appear to care what others have to say :oops:

Luckily this hasn't been for a little while.

Hope this passes soon for you

Love

Toni xx

Wildfire57

Who's the lucky one then? I think its me, I've finally found a group of people who know exactly where I'm coming from.

I have found rock bottom with this disease. I have pushed myself to the limit of my capabilities both mentally and physically and right now I feel I cannot go on. I am lying here in my bed with no interest in doing anything. I am so exhausted I could cry and probably will do, I spoke to the arthritis care help line and to be honest I would get more sympathy from the devil. My doctor thinks the little bit of 'wear and tear' I have doesn't warrant the pain I feel and I should pull myself together and find a job. 'Lots of my patients are on morphine and still go to work you know'.... Ok I'll sliver to work then like a worm. Anyone want a worm like secretary who falls asleep at her computer and types lying down? I doubt it!

I didn't ever know that fatigue was a symptom of arthritis until I found you.

tjt6768

Oh dear, I know the feeling...
I have been stuck in mi pit since Monday evenig after daring to go out into the world for an hour or so, lol...
I am fighting off pain, fatigue and also the drowsiness due to the new pain patches.. BUT........
I will not let it win, neither shall you, you have found the right gang of arthurites to give you the support, understanding and advice that you need You ever heard of the 'worm that turned'? Lol
We are a great bunch of friendlies on here...

Nice to meet ya, keep on posting, it does help..

jennylynn

Sorry......just need to wake up long enough to write something witty and sintilating..................................no cant do it

I actually did think the anti-social bit was just me, sometimes when my OH wants to go down the pub or some other activity that involves being away from my sofa, he really cant understand why i dont want to go. Seems to think i am depressed - i have tried to explain that i am just knackered but to no avail! I've been off work with a virus this week and i can just about keep my eyes open with a couple of matchsticks, my gp said that there was a viral complaint going round but seemed to only be affecting children - and now me (thanks methotrexate!) i often wonder if there is any point actually going to bed as quite frankly my sleep is anything but restful. you just have to take those naps when you can get them dont you?

Jennyx

Wildfire57

tjt6768 wrote:

BUT........
I will not let it win, neither shall you, you have found the right gang of arthurites to give you the support, understanding and advice that you need You ever heard of the 'worm that turned'? Lol
We are a great bunch of friendlies on here...

Nice to meet ya, keep on posting, it does help..

Thank you Tony, please be assured that your sentiments have boosted me no end, its a good thing to know that you are not alone in your despair and others understand exactly how you feel.

prefabkid47

Hi Wildfire57

Tiredness is definitely a symptom of RA.I used to nod off half way through a conversation,not the best of social graces :oops:
We on the forum all suffer to varying degrees but we are here to support and hopefully give advice based on personal experiences. :idea:
We are all great listeners and you never have to face things alone.At times the situation seems intolerable,but with support and hopefully the right course of treatment things will get better,believe me.
Regards
Ron

paddyw

Hi Ellie,Sorry to hear you are fatigued.I seem to have had this all my life,as before i got RA i had ME so been like sleeping beauty most of my life It is awful cant fight it,you really have to go with it and rest/sleep when you can.This am sorry to say is part of it. Sorry cant tell you how to feel better ,but we all know how it feels -not on your own.Take -Care Pat W

Wildfire57

prefabkid47 wrote:

Hi Wildfire57

Tiredness is definitely a symptom of RA.I used to nod off half way through a conversation,not the best of social graces :oops:
We on the forum all suffer to varying degrees but we are here to support and hopefully give advice based on personal experiences. :idea:
We are all great listeners and you never have to face things alone.At times the situation seems intolerable,but with support and hopefully the right course of treatment things will get better,believe me.
Regards
Ron

I think I have OA Ron. Is fatigue a symptom of that too? Actually I've never been told. I have suffered back problems since a RTA in 2000, I fractured a disc in my neck and nothing has worked right since. The problem is I also suffered from brain damage and don't always remember what to say and what to do. I was told a few months ago that I have developed OA in the knees but the immense pain coming from my back is put down to wear and tear. I really need to get a competent doctor but don't know how to go about it. My other problem is that my husband has parkinson's disease and I am his only carer and I need to know what is going to happen to me for his sake as well as my own. Thanks for your kind words, I am finding it very difficult to cope these past few days and they mean a great deal to me

constable

Hi Widfire,

I have OA and I get very very tired, quite often going to bed during the day, but dont feel any better on waking.

I also have a OH who needs me as he has severe spinal problems, so I need to be well. Just waiting to have a THR.

All the people on this site are fantastic, you can have a good old moan or just have a general chat (Val's cafe). It does help relieve your stress levels.

I have only been on this since beginning of march and I have spoken to so many people now, they are all so lovelly

So, keep your pecker up, join in with the other topics.

Karen xx

donnas

I have a thing I do to try and combat the fatigue. If left to my own devices I naturally have a siesta, I'm not as severely affected with fatigue as I used to be, but sometimes it hits me like a ton of bricks.

My "thing" is a type of meditation called "yoga nidra". You download a podcast or buy an mp3 or cd from somewhere and listen to it. It's meant to stimulate all the bits of your brain that get recharged when you sleep. I tend to do it as soon as I get home from work so that I can function of an evening. It only takes 20 mins or 40 depending on the mp3 I use and for me it really give me that wee boost I need. You don't need to believe in any wickywacky for it to work, just lie down, close your eyes and listen. I usually find I fall asleep, or doze, but I really feel refreshed when I get up. A cup of tea after it and I'm fine for the rest of the day.

Let me know if you want to know more!

frogmorton

Oh Wildfire

Poor poor you :sad:

You are really suffering, l am so sorry the helpline didn't help :shock: , but us lot we get where you are coming from totally.

I wonderr how long since you had tests to see how advanced your arthritis actaully IS and had your meds reveiwed?

You are suffering so much and if you were getting the right treatment maybe you woudl (l say maybe) feel a bit better.

I am sooo glad you found us and must say WELCOME!! from me and l hope you will hang around so we can help you (and you us too l think)

Love

Toni xx

prefabkid47

Wildfire57 wrote:

prefabkid47 wrote:

Hi Wildfire57

Tiredness is definitely a symptom of RA.I used to nod off half way through a conversation,not the best of social graces :oops:
We on the forum all suffer to varying degrees but we are here to support and hopefully give advice based on personal experiences. :idea:
We are all great listeners and you never have to face things alone.At times the situation seems intolerable,but with support and hopefully the right course of treatment things will get better,believe me.
Regards
Ron

I think I have OA Ron. Is fatigue a symptom of that too? Actually I've never been told. I have suffered back problems since a RTA in 2000, I fractured a disc in my neck and nothing has worked right since. The problem is I also suffered from brain damage and don't always remember what to say and what to do. I was told a few months ago that I have developed OA in the knees but the immense pain coming from my back is put down to wear and tear. I really need to get a competent doctor but don't know how to go about it. My other problem is that my husband has parkinson's disease and I am his only carer and I need to know what is going to happen to me for his sake as well as my own. Thanks for your kind words, I am finding it very difficult to cope these past few days and they mean a great deal to me

I don't know if fatigue is a symptom of OA,I have both RA (in the hands) and OA (in the ankle) :roll: :roll: :roll:
Really hope that thinga work out for you and keep posting!!

ellierose

Getting the right treatment is so important Wildfire, so don't feel you have to just put up with an unacceptable level of care.

You sound like you have so much going on that I'm guessing it's hard for you to know where to begin. If you are unhappy with your specialist though, go and talk to your GP. (If it's your GP you are unhappy with...can you register elsewhere?)

A few years ago, I requested a change of specialist as I was getting a very low standard of care. No proper reviews of meds, even though they weren't working, no advice, and appointments that were supposed to be 3 months apart kept being cancelled and moved so I only got to see the rheumy about once a year.

My GP was great and suggested another guy that one of his other patients who has RA raved about. It took hardly any time to be transferred over and he is excellent. He actually seems to sympathise as well, rather than just viewing me as another 'case file'. I'm not saying it will be as easy as that, because it really depends on your choices locally, but don't resign yourself to a poor standard of care.

In the words of those great philosophers at L'Oreal, "Because you're worth it"

Hope things start to look up soon x