So fed up of being tired: Hi everyone... - Fibromyalgia Acti...

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So fed up of being tired

ExploringPanda profile image
19 Replies

Hi everyone,

I was diagnosed with Fibromyalgia last year. I have since got back into working 5 days a week and I am just so fed up of being tired almost all or all of the time. The pain hasn't been bothering me too much but the fatigue is awful. I sleep, work, eat, sleep and even on weekends I struggle. At work I'm just so tired and have times where it's a real struggle to stay awake. I'm just so fed up of this. I would love to do more but I just don't have the time or energy and it's so hard struggling so much of the time. Can anyone relate? Does anyone have any tips or advice?

Thank you.

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ExploringPanda profile image
ExploringPanda
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19 Replies
AmandaLG profile image
AmandaLG

Hi EP,I was diagnosed almost 20 years ago and continued working full time until last year when I finally couldn't do it anymore.

My main advice would be to find a routine and stick to it. Even if that routine means work, eat, sleep, repeat. Treat days off like work days, only do the equivalent amount of activity and try to keep to the same hours. And remember that if you do do more or something outside your routine you will pay for it, more pain and fatigue over the next few days. Use your limited time wisely to do the things you really want to.

Or make the decision to put you above work and reduce your hours if you can.

Best of luck x

Amanda

Cotswolds25121 profile image
Cotswolds25121 in reply to AmandaLG

meant to say I always msg my daughter to say I’m going to sleep because as on Friday/Saturday it stops her from worrying if I don’t answer the phone xx

Cotswolds25121 profile image
Cotswolds25121

Hello, it sounds as if I have written your message🤦‍♀️😥Please don’t feel alone with this and how you are feeling. It is miserable, it is draining and it’s no surprise that it gets us down. I came home on Friday from work at about 4pm I was so exhausted I went to sleep (msgd my daughter to say I was going for a nap, hopefully a couple of hours) and the next thing I knew I woke up Saturday evening at 7pm🤷‍♀️I do have sleep apnea and since a study overnight at Guys last year as I had been having the pattern for a over a year, they decided it wasn’t anything to do with the sleep apnea but the fibromyalgia. I have had a couple of months recently where I’ve actually enjoyed some weekends where I wasn’t sleeping so long at a time but in the past couple of weeks I have been feeling absolutely exhausted again all the time, no matter how many hours I sleep. I sometimes just tell myself I must need it but I also get angry and upset at sleeping my day’s away🥱😫I feel like you that my life is just work, sleep, work😖no life at all to have. There’s also the other thing of them not eating, drinking and missing my medication, not good at all. If I ever find a way of changing things then il be the first to let you know 🙏 🤞sorry I’ve not been of any help or been able to give you any advice but sometimes just knowing that you’re not alone is a help in itself. Oh, I have managed to drop a day a week now and I’m hoping that I am able to stay awake to rest but enjoy it, can only hope. Take care 🤗🤗xx

Av41 profile image
Av41

Hello 😊. I’m extremely tired too so I know how you’re feeling! I work full time and just don’t know how long I can continue but with cost of livening it’s so hard. I feel your pain! I just wished there was something that could help. Xx

Loobielu profile image
Loobielu

Hello, I absolutely can relate! I bet if everyone on here had the energy they would message the same lol! I've reduced my working hours, I'm begrudgingly accepting my limitations but I haven't conquered it either 😏😴. We can't give up though, so keep battling forward one day at a time. We are fibro warriors (we just don't always feel like it!). Gentle hugs, know you're not alone xx

Seascapes31 profile image
Seascapes31

Hiya I can totally relate to your experience of this illness and the awful fatigue it seems to bring with it, sending hugs to you xx

Coogy52 profile image
Coogy52

Hi I've had fibro for the last 5 yrs, the chronic pain n tiredness is awful. I worked for 30yrs at Royal Mail but had 2 give it up in the end I just couldn't cope with it any longer. I was fortunate enough 2 get Voluntary Redundancy when I was 50n its the best thing I ever did. I still have the chronic pain n tiredness but at least I don't have to go to work now. Could you look into reducing your hours at work maybe? Try and apply for pip/benefits?

1whitestar profile image
1whitestar

Hi , I have the same issue I also have arthritis and I have bean off for 7 months. I was full time. The hot humidity makes it worse for me and yes I get the tiredness and it comes all of a sudden. Usually afternoon. I am hopeful that I can try part time .

2hot profile image
2hot

I was doing the same for 10 years then another thing (don’t know what yet) manifested itself and I decided to give up work and have what little time I have awake to focus on me. I sleep two or three times a day and still sleep at night but I can do some nice things in between. At the moment I am still getting sick pay but after that I think my diet will be porridge and beans and what I can grow. Do what you need to for you. Good luck.

Mystique23 profile image
Mystique23

TI totally feel you. I was working shifts in a physical job for 40 hrs a week dropped down to 16 hoping it would help. Still the same, totally exhausted all the time. Currently been on sick leave since Jan and still the fatigue will hit out the blue. It's hard but at least now I'm not in so much pain as not doing the physical aspect I'm also sleeping better at night which has helped with the pain. Still need to nap twice a day but there are some days where I spend most of it asleep and still sleep at bedtime. The fatigue is hard because it can happen suddenly. It hit me the other day when I was driving, I had to pull over and snooze to be able to continue.

I'm finding that not stressing about going to work has made it easier to cope with the fatigue. It's not easy but it's life.

Hope you find a routine that works for you. Xx

Alice2004 profile image
Alice2004

I am related to this, for the last 2 years I have been in constant battle and is ongoing , is not easy but I have to keep going.

Be strong and make a routine for you

Divorced profile image
Divorced

so can relate to you all , it sucks 😢🙊

Tuscany profile image
Tuscany

Hi there. I used to work full time at a computer and found myself falling asleep at my desk. I would get in trouble at work for not pulling my weight, but I just wasn't coping. I have my own little business now which is still very hard but at least I don't have a horrible boss telling me off and not understanding what it's like. I would suggest making some changes. Reducing your hours if you can. I don't know about your situation but I have had to go on benefits at the end of last year because I also split up with my husband. I have applied for PIP and an increase to Universal Credit so I don't have to keep working so hard, because you just can't keep going. It's too hard. Have a think about it. I totally understand how you feel. Take care xx

FibronewbieJab profile image
FibronewbieJab

Hi, I too work 5 days a week, but only from 1pm to 5pm. I used to have to cover morning shifts when my work colleague is on holiday, meaning doing 9am to 5pm. My manager is aware of my Fibro and that I end up in bed all weekend, and can no longer function doing all day, it's enough of a struggle doing my part time hours. I now no longer have to cover holidays. It might pay you to have a word with your employer and see if you can do reduced hours, otherwise you have no life at all, as your free time is spent recovering from work. Definitely worth looking in to. I hope you get it sorted.

Meditationlover profile image
Meditationlover

Hi, exploring panda, I can definitely relate, the pain and tiredness started impacting my life everyday. I have to have afternoon sleeps 💤 everyday. I use to work 5 days also, but unfortunately I had to reduce to 2 days only, since then I'm coping better. I lose money, but I couldn't go on the way I was. Just got back from Dorset and I still had to sleep

Dash01 profile image
Dash01

I literally seen the title and was like yep and me. Hope your feeling better.

For me I’m so tired but then can’t seem sleep properly

I am 100 percent the same wake up go to work come home, eat and then sleep and weekends are a waste of time Saturdays I normally crash and then Sunday I try and do something and then back to work I totally feel your pain, if you find any tips please let me know haha.

I also feel like I don’t have a life because at the weekend I’m just sleeping sleeping sleeping but what can we do? I seen a lot of posts where it says well maybe reduce your hours however I just can’t afford too I also really love my job and I look the business but believe me some days I struggle to get up and function, sometimes I wish I could like shut down for a the day and re boot myself!

Least your not on your own and I’m not, here for a chat always. Sorry I don’t have advice but please share it you do find something!

Gulfstream_Maggie profile image
Gulfstream_Maggie

Hi Exploring PandI understand exactly where you're coming from.

Always soooo tired and can fall asleep at the drop of a hat - daytimes and evenings.

But when it comes to bedtime I join the "wide awake club". Takes ages to fall asleep; then constantly wake through the night, even just to turn over in bed!!!

Luckily I work from home, with 1 office day per month (if I'm up to it).

However, not good when listening in on a Teams meeting or training as I can be known to nod off.

Not good particularly if on-camera!!!!

If you find any tips or tricks please share 🙏

IlGattoPanceri profile image
IlGattoPanceri

Hi! I know how you feel. Sadly I had it too when I was working, to the point of where I had to awfully sleep at least twice/three times a week on the office floor during my short break and when I was closing the office I couldn't get straight home from work and do the 1h tube travel so I would put my coat on the floor and I had to close my eyes. Would fall asleep so quickly I had to put an alarm because I would wake up two hours later so destroyed from the fatigue and pain. Was awful. If I didn't my eyes and hands would start to shake and I couldn't keep my head up and fall asleep even standing..My advice is don't do like I did. I push and I push because I wanted to live like I didn't had fibromyalgia and of course chronic fatigue with it. I had to see different doctors (and the company doctor) and they told me I cannot work full time anymore.. I couldn't. Then fast forward a few months working part time (30/36hrs a week) wasn't as bad as before but my body couldn't handle working anymore. I had to medically "retire" from the workforce for now and concentrate on my health. Found a way better balance and resting needed, even tho I am still suffering, it's way better than what it used to be .

Anyway sorry for the long reply, but my only advice is listen to your body, have a pain management course, and schedule the important things to do and looking after yourself is on top the list. Keep active is very important, but don't push it to the point where your body can't handle it. It takes time and various attempts but you will be able to find the right balance one day. Hopefully. It will always be a work in progress.

Be determined, put yourself first and follow what pain management course advices.

Hopefully this will help somehow.

Take care x

fibrogirl41 profile image
fibrogirl41

I feel like this alot and get fed up, i wish i knew what to do, i have had hydrotherapy but it was expensive, and physio etc i hope you are okay x

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