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how are u all today??????????????how does fibro effect u day to day

diane63 profile image
11 Replies

after a day of lying on couch, moving my body in a rocking sensation to help the pain, the fatigue after not sleeping for 4 nights in a row...... that was yesterday... and today i feel a bit better.. not that i could run around lol but better than yesterday..

how does fibro effect ur everyday life.. i think people just think we ache a little and feel a little bit tired.. but how and what does it stop u from doing. i would love to here other peoples way of life if u dont mind.. i just want to see if mine is the same.. thanks diane xx

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diane63 profile image
diane63
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11 Replies
jekkstar profile image
jekkstar

I change from day to day. Somtimes pain and mood means I never get out of my Pj's.

Other days I am able to cope with the pain in the day and at night time i'm in agony.

Others relatively normal...ish.The normalish are few and far between with 3 kids I cant stop...

My house is generally messy atm cos with sorting kids, feeding kids, shopping for kids, I just find no energy for housework. I do a room a day (if I can)

Everyone is different I guess pain threshold, how bad your fibro is...but rest assured from what I've read on this forum EVRYONE has bad days. Chin up.....face it smiling.These guys made me feel so much more secure yesterday that today I am buzzing. I know I am gonna crash and burn but i'm gonna do it style:)

Clare (jekkstar)

Extremelygrumpy profile image
Extremelygrumpy

My fibro reacts to stress.... Was feeling great till an incident half an hour ago now I am going to give in take pain meds and will come back when I am a happy bunny again

Glad you feel a little better today

VG xx

Cleaner profile image
Cleaner

Yes I also change from day to day. Today is a bad day feeling very tired fatigued and in pain but I am still working all thow very slowly. It's a case of needs must. Even on days when I have a job to get out of bed I still manage with pain killers to somehow keep going, by the end of the day all I do is crash. But like Clare said each of us have there own way of copping with it. Take care xx

lbbksscjcbj profile image
lbbksscjcbj

same here each day differs,i feel slightly more lucky when i have the pain,rather than constant need to sleep,which sound odd i know,but the sleeping drives me insane,the no energy. my pain also differs from day to day,everyday is the muscle cramps,with the burning ,being sliced through feeling,and needles pain,sounds odd again but prefer that then when i get my senses kicking off,i.e. my eyes burn without sun glasses on,feel sick with the slightest smell of something,then the migranes and the touch (mainly my legs ) so sensitive to being touched,also the water,what i can cope with one day,i can not when my senses kick off,heat. i feel other than the support from the people of here,it also may help with focusing on something good in your life,mine is my grandson,he is 3,and knowing i will be seeing him on my good days,makes me feel so lucky,and all that pain has been worth it.am sure we all have had or do think is my life worth anything at the moment,i felt yesterday i am no use to others never mind myself. so yes i was having a really bad day,and today i feel the dam pain every were,but i have to look at it as people are so worse off than me,health wise,and i am lucky that i am loved,i to am still learning about coping and managing ,and as jekkstar said everyone has a different pain threshold,or maybe find different ways of coping.i suppose people on certain medication may find a difference with there pain.as am on so many different meds for other problems i can not take certain pain relief.ARE YOU ON ANY PAIN RELIEF DIANE63 ?same here stops me from doing almost everything,even to make a cuppa would you believe it takes me forever,espcially when the brain fog kicks in aswell.

Cleaner profile image
Cleaner in reply tolbbksscjcbj

I also suffer with burning. Eyes and smells which make me feel sick and sometimes I am sick. My legs also hurt most of the time but I never new its migraines . I get. Plenty of them in my head. Thankyou for writing these thinks down I didn't realise it was to do with Fibro plus the brain fog is the worse that never goes away. X

diane63 profile image
diane63 in reply tolbbksscjcbj

yes.. i am on fentanyl patches... got oral morphine which i try not to use as much... thought idid last night during night and legs and hips were killing me.. i aslo take parcentomol and sometimes diazapam... i find the fatigue is worse than the pain.. i know some might think oh ur pain cant be that bad.. believe me it is x just when ur fatigued the pain is worse and u cant do anything at all... hope ur well today.. and i am glad ur wee grandson keeps u going xx

julieevh profile image
julieevh

Everyday is different.

Yesterday I went to the hospital for a mammogram, came home , had breakfast and slept for 4 hours, brushed up the dog fluff from the living room (love my vinyl floor covering - perfect for dogs), took daughter to return blockbuster video and had a mcdonalds for tea. The rest of the time was spent watching TV and drinking tea lol. That was enough to exhaust me cuz I slept soundly for a nice change.

Today it is 2 o'clock and I'm still in my jimjams on computer and napping ... yesterday was tiring!

Julie xx

Celticmoon profile image
Celticmoon

My story echoes so many others on here, particularly julieevh.

If I do a task then I must pay for it and rest otherwise I crash big style. It is difficult, very difficult to accept the "new" you, my mind constantly compares my life today with a very different life when I used to work, study, clean the house AND look after all 7 members of my family - including my 2 elderly parents who lived with us. My mother who was completely & utterly dependent upon me to do everything for her & my father, although personally independent, relied upon me for washing, shopping, meals etc. I look back at that now and just wonder how I did it all...

Now my days largely consist of getting up, doing a little light housework and cooking our meal with collapsing in a chair on and off during the day until bed time when I repeat the whole saga again - not all exciting but it's what I can cope with. I'm on high doses of Fentanyl (morphine) & Tramadol for pain and a sleeping tablet but still don't sleep great unless in a sleep mode of course... Then. That's all I do!!! I frequently experience severe pain, which sees me rocking and twisting in bed or chair just trying to cope with it so I totally get where you're coming from.

One thing I do know for sure is that although you may feel quite alone with all your challenges you're not!! Knowing this helps me no end and I hope it helps you... ... ...

Just hold onto the fact that you ARE coping, that you ARE being challenged by the illness and that you definitely are NOT just lazy or giving in.

Gentle hugs. xx

diane63 profile image
diane63 in reply toCelticmoon

i am on fentanyl patches 75mg.. never new u could have tramodol. was told i could take co codomol.. i use to have tramodol before fentanyl.... have u been told u can have both together or do u just take them xxx

Celticmoon profile image
Celticmoon in reply todiane63

I take 150mg of Tramadol in modified release form once a day then 1 50mg ordinary tablets once or twicea day as and if I need them. This is on the direction from my oncologist and GP who continues to prescribe them for me. I'd never just take anything like that ~ having nursed for over 25 years I realise the importance of being transparent in what you are medicating yourself with!! I'm also prescribed oral morphine but choose not to use this as it just makes me feel sick & gives me an upset stomach.

Over the last 11 years I've tried all sorts of pain relief, moving from Butrans patches to Fentanyl last year, which was a very good move for me. I've taken Tramadol & Zamadol (the modified release version) for 11 years now and am fortunate that it seems to suit me and that, in the main, it keeps my pain down to a dull roar... Of course there are still times I get so-called "breakthrough" pain (sounds gentle and not to severe doesn't it? LOL!!) While this can see me twisting and turning in bed or chair until the Tramadol takes effect if I keep on top of patch changes and keep topped up with Tramadol things seem to be well-controlled for at least 80% of the time.

I hope that helps you diane63..? If you have any other questions I'm very happy to answer them. :-)

xx

Ginsing profile image
Ginsing

It sounds like we are back to the spoons theory- I find some days I am totally exhausted and canot keep awake others I am awake but in pain and cannot sleep. I try to keep doing stuff unless I really cannot move and my back and hips are yelling then I AM forced to give in.

I agree with the comments on being alone from celtic moon and to realise we are not on our own is a terrific help and moral booster.

Keep going - the only way is up - xgins

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