Does anyone else think they are pract... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Does anyone else think they are practically in a continual fibro flare up?

KathyBill810 profile image
27 Replies

All the way up until 2 years ago I worked 1 or 2 full time jobs. Now I work 2 4 hour shifts a week. It takes me a day or 2 to recover from 4 hours on my feet. I feel like I have lost my real self.

Have any of you had night mares as a result of medication? Mine have continued now for 3 weeks. It's hard to sleep and go back to sleep when you wake up from one. K

27 Replies
Celticmoon profile image

I've had a very difficult winter this year and would say I also feel as if I am in a continuous flare... I've had 4 colds (never used to get colds) and this last one has wiped me out completely. In fact I've spent the last 6 weeks more in bed than out. Yesterday I thought that I'd never be up on my feet again and was beginning to feel very very down but today I managed to get up during the later part of the morning and do a few chores and write a letter!! Not much I know but from a place of nothing achieved it's a start. I just hope it lasts and I don't catch another cold - the last one I brought home from my monthly visit to the doctor, which is due again on Monday, so think this time I'll wait in the car!!

I really hope you feel better soon too; just be gentle with yourself and don't feel as if you are failing or "losing yourself"... <3 Quite honestly for me this is the worse thing about FM, the never ending unpredictable nature of it and the unrelenting fatigue. I so often feel a burden to my husband as it's so easy to measure your worth by what you "do" and when you don't actually do anything it's so easy to feel worthless... So if I'd share anything at all with you it would be to take each day at a time, celebrate every small achievement and breathe easy over the rest. Wishing you well. xx

KathyBill810 profile image
KathyBill810 in reply to Celticmoon

Thank you so much. I am finding that I can almost guarantee myself 3 solid hours a day. I have to use them wisely but I too feel like I can be a burden most of the time. I appreciate your response:)

It's so hard I only work 21 hours, I have no

Life tired all the time pain all the time.

But you know we will not die from this

So that's lucky


KathyBill810 profile image
KathyBill810 in reply to

you're so one has died as a direct result from fibro...I too have cut back to about 12 hours a week. One day on and one day in between to rest. Thank you:) K

tettridge profile image

Hi all

Yes I have had more down than up at the moment and it is quite frustrating to realise you will never do certain things again. We had a Motorhome and have just had to get rid of it as I have not been well enough to enjoy the trips we would take. I would find the journey to and from wherever we would go would be so debilitating that it was not good for me and so we slowly stopped going and then realised that we both are not well enough to drive the vehicle and so we sold it (big regrets at times) now my life is when we get some nice weather we go for drives out with the dogs and make a pick nick type lunch and just get out the house for a day.

So far this year we have not had good enough weather when either my wife or myself have been good enough for a day out, but as Vivien says this illness will not kill you, it just makes life painful.

Take care and kindest regards


KathyBill810 profile image
KathyBill810 in reply to tettridge

Thank you so much Terry. I understand all too well how it changes your life. It is very frustrating. Thank you so much for your response and for just taking the time. I have had diagnosed now for about a year. K

TheAuthor profile image

Hi KathyBill810

I am so sorry to read that you are living with a continual flare up, and I genuinely hope that you can find some resolution and relief to your issues. I have felt this way for a few months now, but it is do with other external factors. So you have my complete sympathy.

I can honestly relate to your phrase, 'I feel like I have lost the real self' as I have felt like this since my Fibro diagnosis last year. I am no longer able to pursue all the employment opportunities that I always took for granted and this is difficult when you want your life back!

I have pasted you a couple of links in case you haven't seen them and they make very interesting reading:

This second one relates to a question about 'Flare Ups' a year ago:

I genuinely hope that you can find some resolution and relief to your problem.

All my hopes and dreams for you

Ken x

KathyBill810 profile image
KathyBill810 in reply to TheAuthor

Ken thank you so very much for the links and just taking the time to respond. I genuinely appreciate it.

mazzer2 profile image

I agree with everything ive just read I too now only work 18hrs ...i wish i didn't work@ all but cant afford not you all will very depressed and constantly in pain...developed worse pain ever in legs can barely walk some days it is so not much help on codeine duloxetine naproxen..could this be the problem.i have psychologist chronic fatigue /me pain management clinic in 2weeks hopefully she will be of some help...all best wishes to you all. .hope today sees us all in less pain xx

KathyBill810 profile image
KathyBill810 in reply to mazzer2

Thank you so much for taking the time to respond. I too have problems with my legs and walking.when I am in my worst levels of a flare up.

gracesgrandma profile image

Hi Kathybill 810 I have found that for most, like myself, this is the way it goes. You start out with flares and then 1 comes along and never goes away. It takes a little while to realise, because we are all so used to the pain, but then 1 day it dawns on you that you haven't had a pain free day and it is just another part of the condition that you have to learn to live with and adjust your life to. More easier said than done I know but the sooner you accept this condition warts and all the less depressed you might get , and 1 less(haha), thing to contend with. Good luck.

KathyBill810 profile image
KathyBill810 in reply to gracesgrandma

Thank you so much for taking the time to reply. I agree. It seems like it has been one continuous flare up. I thank you ...and thank all of you for your kindness and time. K

Artyrosie profile image

I'm another person who doesn't really recognise the pattern of "flare ups" that some sufferers describe - with me its always painful, its just the level which varies up and down, and the same with my energy. Sometimes I know its because I've done too much, and other times I can't see any pattern, or understand why I wake up feeling as if I've been working in a coal mine all night!

It just seems to be the way it is for some of us. Its also true for me that over the 20 years I've had this illness I've slowly become worse - not dramatically, just a little less able to do things year on year, and I'm not yet so ancient (60!) to put it down to old age and infirmity either!

Ken I'll have a look at those links too - thanks for the suggestion.

KathyBill810 profile image
KathyBill810 in reply to Artyrosie

Thank you so much! I'll be 52 this year. I find that I have about a 3 hour window to do anything. I can use it all at once or in little bites of time. Either way I'm completely drained and completely totally in pain at the end of it. I push thru and fight the good fight ...but like everyone else, this takes such a toll. I appreciate your reply. K

rosewine profile image

Hi Everyone

I think that some peoples defination of flares varies from other peoples. Some people may have for whatever reason normally have well controlled fibro so it rarely affects them day to day but if for some reason they overdo things or have to change their medication they are suddenly in terrible pain they call it a flare. Others like me and many other unfortunates who are always in pain quite badly count a flare when the pain and discomfort levels go off the scale and we literally grind to a halt with it. I think we all are quite brilliant at coping with the pain we have to endure that would put a "normal" person in bed for weeks. I have just unfortunately to my regret snapped at my poor husband for keep on leaving the door open as "bless him" he can't seem to understand that being in a draught sends my normally painful legs up 10 notches on the pain level. I loved that ladies "Love Letter To Normals" that tried to explain her condition to fit friends and family and how one minute you can be fine and the next minute awful. The trouble with fibro it is what I see as an invisible disease and because the majority try to put on this coping persona when we are with other people they think we are okay. If we had broken our arm even though that is a temporary situation we would have masses of sympathy and help. I am just praying that they will find a cure some day and the only flare that we would be talking about would be a lit one. Dear Tettridge my heart goes out to you with the Motorhome as my husband and i were also motorhomers and we had to sell our large one when he was diagnosed with epilepsy and couldn;t drive a large motorhome. We weere still hoping on retirement to get a smaller one and drive around and of course then I become ill, what do they say about best laid plans. Still can't really accept that I have got to get on with whatever this "new" life brings. Big hugs to everyone who is suffering at the moment.xx

KathyBill810 profile image
KathyBill810 in reply to rosewine

Thank you so much for sharing your story and your time:) K

Matrix profile image

Hi,I can totally relate to you I can no longer work and have not done so for 14years .Whatever I do that takes me out of the house has to be paid for and if I do it takes me a week to cope with it .I know we won't die from it but sometimes when it won't stop it is very hard to cope with .I wish you nothing but health and a real wish for you to be out of your flare and all the rest of us too .x

KathyBill810 profile image
KathyBill810 in reply to Matrix

Matrix I wish the same for for all of us:) I never in my wildest dreams thought I would run in to a brick wall as I begun the happiest chapter of my life. K

Hi KathyBill810

Firstly, welcome :) you have chosen the best place to come for friendly advice and support for Fibromyalgia.

I do know how you feel I have experienced similar working hours with two jobs and at one point I was at university too finishing my degree. I don't know how I did it apart from think it must all have been adrenaline :o

Now I am lucky if I manage to muck the hamsters out and do the few chores that I still do. It takes me ages as my baselines are low so I have to keep stopping but I still do it. This last 4 months have been a nightmare for me with something being or going wrong from day to day! It's difficult but we must try to keep positive, one thing I do is reward myself with a treat for achieving things like finishing chores, getting to the shop, sometimes when I'm really bad like at the moment I treat myself for getting up, washed and dressed :)

It's all about pacing, when you finish your shift do you get the opportunity to have some relaxation down time to recharge? I would like to give you a couple of links that I think you may find useful, I hope you don't mind!?! :o

Post from the past by Mdaisy 'FibroAction' Try to make time for you !!! :

Another Post from the Past: Imagery for aiding relaxation - where does this picture take you?

Have you checked our mother site it is full of useful information regarding Fibromyalgia If you need answers about, doctors or even medicines, alternative medicines there are sections on the fibroaction site if you hit the link above. You'll also find sections about all the categories that are there on the right of the screen, which is where you can browse through peoples posts from the past.

The creative corner, pet's corner and comedy corner are quite popular for light relief and distraction from the pain we feel as we like to be positive but also cheer each other up too as well as let off steam in virtual playtime :D

However, we do have our serious sides and are here to help and support if we can. I must say that I'm not a medical professional just a fellow fibro friend sharing some info :)

Here are a couple of links to help you find your way about

FAQ - I'm relatively new to this community, is there anything I should know?

FAQ - I am having trouble finding my way around the site, please help?

We all like to blow off steam whether its with a moan or a giggle so please don't be afraid to join in :)

Looking forward to seeing you around :)

:) xxxsianxxx :) sorry for the mega reply :o

KathyBill810 profile image
KathyBill810 in reply to

Thank you for taking the time for such a lovely mega reply. I just appreciate each word that each of you have shared. I was given 3 months of samples of cymbalta ( I now refer to as Satan). It's a life saver for so many but it counteracted with my other medications giving me huge rashes and night mares. I weaned myself off of the cymbalta...the withdrawals were truly awful. The pain from it leaving my body ..the worst reaction I have ever had. Since starting taking cymbalta, I had horrible night mares. Even since I have stopped, I have night mares every night, waking my poor Bill up.

I so truly appreciate each of you for reading, listening in your own ways, sharing your stories and sharing your ideas and hopes. Thank you again:) K

lilian68 profile image

i am in constant pain i see a flare up as pain off the scale it has been a rough winter worse than last year getting out less .x

KathyBill810 profile image
KathyBill810 in reply to lilian68

This winter than never seemed to end has been the worst for sure! I hope we all get some relief soon. The cold damp seems to affect me the worst! K

Lizzyear profile image

Hi Kathybill809,

I so understand how you feel.

I have been in a 'flare' since December. I was just becoming more and more exhausted( doing the same things, :-i.e. Getting up and dressed. When I saw my doctor last she took my bloods and they found I was chronically low on iron and had transfussion and an iron infusion. I was hoping this would make me feel better, but no great improvement yet!?

I try to go around with a smile in my face. But when I am home alone, I lie on my bed and howl for the life I have lost, it's sort of like a grieving process. Don't get me wrong, I am a cup half full sort of a gal, but I do genuinely think we feel bereft of who we were.

But this is a brilliant sight to a talk our feelings through, family are good, but you need somewhere to talk freely, knowing you are not going through this alone.

I do hope you start to feel better very soon.

Gentle Hugs xxx

KathyBill810 profile image
KathyBill810 in reply to Lizzyear

Lizz thank you for your reply. I am the most positive, happy go lucky, law of attraction girl that my friends know. I do understand the grieving...I do that too on my way home from work and if I am in the kitchen trying to cook alone. The other night I couldn't even open a package of crackers to go with my soup. Darn trigger thumbs and fingers in both hands! But my sweetheart came in and told me not to cry..he will always be here to open my crackers:) smiles.....thank you again for sharing your time and story. They all mean so much...each of you truly help. K

Matrix profile image
Matrix in reply to KathyBill810

Thats so lovely my hub is just like that ,he is a keeper xx Hope you feeling a bit better today .xx

KathyBill810 profile image
KathyBill810 in reply to Matrix

Thank you... I'm on that crazy fibro wheel of 'what is your symptom today'. It's always changing..the pain from one place to the next. Yesterday it was legs and back. This morning I woke up and could hardly lift my arms. I hope you are having a great day !

tettridge profile image

Hi Kathybill810

I have been reading these posts and would like to thank you for replying to them, from what you have written it seems you are a very nice person, that is often the way the people who are the good ones and try to lead a good life whereas there are some who could do with walking in our shoes for a week and then see their reaction to this pain and exhaust and lead a life with that. I honestly would not wish this on anyone but just for them to have a taster would make so much difference to their outlook.

As you have said this winter has been really bad for most of us, my problem is mostly the change of weather if it stays wet I am able to get used to it, the same with the cold or the heat. what I am unable to take is the change in the weather, the way it has been for the last couple of months have been terrible as we have been having wet for a few days and then it goes dry then wet and that has really taken its toll on me . As you said a three hour window to do anything provided it does not involve lifting carrying staying in one place or moving to far well you get the idea.

Sorry for waffling but I only wanted to thank you for replying to everyone as that can be quite a strain doing that as it takes up so much precious time.

Take care and kindest regards


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