Since being diagnosed with FM, my tiredness has got completely out of hand. I don't work because of my condition, but now find I can't even get through a lazy, inactive sort of day without feeling so bone-achingly tired that I want to lie down right where I am and cry. Sometimes I feel that I want to just go to sleep and never wake up. I am a waste of space and my husband is at the end of his tether!
Does this sound familiar or am I a one-off who complains too much?
Your not alone and many
Of us with this condition feel this way. I have seen my self cry because I am so tired an have spent days in bed. Sending u a hug hope u r ok
Your not alone and many
Of us with this condition feel this way. I have seen my self cry because I am so tired an have spent days in bed. Sending u a hug hope u r ok
Hiya please please don't feel like your lazy or a waste of space... that is not true!! We all need to let off "a bit of steam" every so often and here we can sympathise with you.
We all understand how difficult life is with this condition and it is almost impossible to describe to others what it feels like to be inside our body.
Have you asked your husband to read the Spoon Theory butyoudontlooksick.com. It may help him to understand what a day in our life is like.
May I ask, does he help you with housework? Try and get him involved so there is not so much pressure on you. Stress is a big part of the condition.
I quite often sit down and "nod off" to sleep.... My daughter shouts at me "mum your asleep again!".... I just laugh it off, pull my "socks up" ... with this condition it helps to be able to laugh at myself and stay positive.
Learning to live with it involves "pacing" .... My motto is little and often... Don't try and do things all at once... I just do a few items of ironing several times a week, instead of all at once. Spread out tasks.
Be patient with yourself and make time to relax every day, e.g. read a book, gentle yoga, a short walk.
It takes a lot of practice to learn to live with a chronic condition, so don't think badly of your self.
Have you looked at the information on. fibroaction.org ?
Take care xxx
THANK YOU, I'd given up trying to explain how difficult life is with a chronic condition (gave up before FM, when all I had to worry about was depression) but will refer sceptics to spoon theory in future.
I recently had a gynae op as a preventative measure for an unrelated condition: afterwards almost everyone (including my nurse sister who should know better) assumed I was 'fixed' and that this would make all my problems go away. Only those also living with a chronic illness understand when I say the gynae problem barely registered in the pain scheme!
But, more importantly, this article also helps me forgive myself for all the things I can't do.
Thank you, thank you, thank you a million times and a million more.
Hi Highroost.
Firstly, poor you. I think we all know how you're feeling to some extent or another.
Secondly (and the following comments are from MY experiences only) the tiredness/lazy cycle is *so* difficult to break. I have a dog, and most mornings the absolute last thing on earth I want to do is get out of bed, let alone drag my bike out the garage to go for a ride, or stomp round the woods for an hour till Brian (said dog) has been sufficiently amused. That said, I feel so much better afterwards. I'll still be tired, but getting out and doing something, anything, helps blow away those cobwebs and gives a real sense of achievement.
I get most tired in the afternoons, about 2pm onwards, and, if it weren't for the fact I have a job, I'd happily lie down and sleep for hours. Sometimes I will be ready for bed (eg: sleeping till the morning!) at 4pm and the evening just yawns ahead me like so much empty space. So, rather than sleep, I will try and read for a while. I'll have a bath. I'll walk the dog, I'll ride my bike, I'll ring a friend. Again, anything where I can say "yeah, I've done something productive". Instant boost.
As a side note, wanna know what has really helped my terrible fatigue issues? I stopped drinking coffee. Instead I drink high quality green tea with a teaspoon of honey to taste. I drink loads of water, and I eat only clean foods (fruit, veg, nuts, pulses - anything without a label) about 90% of the time. The other 10% I am stuffing my face with ice cream or pizza or something else BAD. 
You also shouldn't be hard on yourself - enough other people will try and do that for you! You are not a waste of space - you are ill. You aren't lazy - you are ill. You can't help the way you feel, and so you should try not to blame yourself. I know, easier said than done. Your husband, while he could be more sympathetic perhaps, will be suffering too. I don't know how much he understands your condition, but education is key, be it through visiting your healthcare professionals with you, using online help, reading books etc.
Maybe consider some form of counselling to help you through this rough period. I know that the consultant that diagnosed me was VERY unsympathetic and dismissive, and discharged me from his care, and his office, 3 minutes after telling me I had fibro. (I've since been told I also have Raynaud's and severe hypermobility on top of my angiodyskinesia). No help, no support offered, nothing. Git. Do you have supportive friends? Ring one for a chat.
Now, I'm reading this back and thinking I'm waffling, so I'll stop. But, please don't do yourself down, and please don't look at yourself in a negative light. A positive mental attitude, no matter how ridiculous it might seem to muster one up, works wonders.
Much love xx
I just think its so hard for everyone surrounding an FM sufferer but I've had a really bad time lately cos had daughter and grandkids(3 and 5 months )come to live and it had really finished me off! I am so used to being a whirlwind, get it done person and now I'm totally useless! That's hard to come to teens with and I have to act as piggy in the middle as my husband finds the recent invasion very hard to cope with on top of me being like I am! Oh world!!!
Hi keep your chin up ,I know this is awrful ,I had what I now consider a busy day yesterday, did only a 5 th of what was a busy day ,a little bit of paper work, a small shop and a couple of phone calls and today after a night of pain and little sleep ,today I have no energy at all and keep sleeping ,it doesn't help that I have a beagle on my lap snoring and apparently when I do sucomb he swaps places with a lab who couldn't get comfortable earlier and pushed me on the floor ,much to my daughters amusement ,the one main thing that keeps me going is laughter, the fact that I was a whirl wind ,and now I am a sloth amuses my daughter no end ,does your husband remember what you were like before ,does he not realise that the stress he puts on you makes you stress and in fact makes you worse does not help ,how would he feel if you treated him as he seems to be treating you ,he needs to be more understanding and put himself in your place ,get him to read your replys on here but he did promise in sickness and in health ,I am a keen cyclelist ,kite flyer, and more than anything am a very bloody minded indepentent woman who dare the local vicar to absail down the church tower for charity I am 52 but still think I am 21 inside I hate what this dam illness or deasese or whatever you want to call it has done to my body and mind , and now I have to ask for help I moved house twice virtually on my own with two lots in a white van and a cleo most of it went in the car ,the car had to have two new springs ,tell your husband to tie to bags of sand to his legs and the same with his arms put a weight on his head and function 24/7 like that see how he feels ,time and time again you will read as new people come on our wonderful site how the wives husbands mothers fathers children friends don't understand ,if we had cancer they'd understand they would cross the rd and pretend they haven't seen us ,but they would want us to care for them be patient and loving tell him we are sorry we are such an inconvience but stress doesn't help kindness does ,sorry for my rant but please be kind to your self if you don't you won't help yourself stop fighting and sorry tell your husband more excepting is the moto of the day .
Take care christina xxxx
I agree with all of above, this is a real illness, you are not lazy. Does any one else feel that some people when they read up on Fibro will latch on to the mis/information that states that this illness is not real. My answer is to inform them that it is diagnosed by experts who actually know what they are talking about. Hope this makes sense I don't always. A little activity when you are able is the way to go. XX
Hi Highroost
I have read your post with so much pain and sorrow for what you are having to endure, and I genuinely understand where you are coming from, and I suspect every other member on this forum truly understands the pain, misery, the fatigue and sadness that you have conjured up into words.
I am going to say the same as all of the other members that have replied to you, as you are not lazy, you are not worthless, you are genuinely ill. And your illness has a name, Fibromyalgia!
I want to wish you all the best of luck with finding the answers that you so desperately desire and deserve.
All my hopes and dreams for you
Ken x
Hi,
Your not alone, though that's not going to help you cope.
Do you pace?... it maybe your on a relapse if been overdoing things.
I have CFS/ME & FM diagnosis (plus couple of other). I honestly don't know if FM causes your kind of fatigue as for me it's all intermingled.
Try and find yourself a baseline. Maybe start from very little and slowly (v slowly) increase over weeks... see if you can find a baseline that doesn't make you worse. Remember normal stuff not full on stuff.
My baseline doesn't allow me a great deal but it's better than previous major relapses.... hospitalised and zero mobility then!! Still pacing doesn't always work.
It's tough for family to deal with, takes time for adjustments on a day to day. Try and be open about it together.
Wishing you well,
Xxx
Sweetheart I totally understand. Have you ever been to a pain clinic? Also you may want to get some blood work done. Sometimes we lack Vitamin D and B12 that can help us feel a little better. I hope you feel better and get the help you need!!! Hang in there!!! xxx Mitzi
Hi Highroost,
Your story sounds like a mirror image of me!
I obviously don't know your husband, but mine is very good, but it must be so difficult caring for someone with this dreaded condition.
I was asked to leave my job in February this year due to the fact the manager and other members of staff watched me progressively getting weaker and slower.
Now I've been told by adult social services that it's probably not a good idea to look for anymore work just one.
My husband is at his wits end too, I can feel it. If only they could walk in our shoes for a week!
My worst problem is the uncontrollable crying and feelings of despair.
You can always speak to me on here or private messenger.
What medication has your GP given you?
Gentle hugs (((hugs)))
Lottie
chronic fatigue clinic ?
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CHRONIC FATIGUE OF HIGHROOST
