what is the worst thing ??

i was asked by my eldest girl what i felt was the worst thing about this condition.. i sat and thought for a long time ,, i think for me its all the other things that seem to be coming up alongside it ,, fibro as a standalone condition can be to a degree managed ,, but with the thyroid and low blood sugars ,,arthritis ,depression ,,, it seems to have no end as they all have elements of fibro ,,

got me wondering how everyone else feels about this xx

19 Replies

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  • Definitely the fatigue for me. I find this the absolute worse thing even more so than the pain.

  • i suppose the worse thing is not nowing where fibro is going i just seem to get worse year on year i know as you get older you experiance pains etc but this is a bit much at 65 2 years ago i was going to gym three times a week not doing too much but enough to keep reasonbly fit as i had just been diagnosed with C.O.P.D. also i would have a swim as well but now cant do any of that have a job to do garden just have to plan when to do things and when to rest still get it wrong at times then i suffer so what im trying to say with this illness there no easy answer even though we have a lot of simalarities we all have other probs. that go with it so reall i suppose we have to do what feels best for our selves xx

  • its the unknown with me,I get worse bit by bit, my mobilty isnt very good, my arms are very week, cant get in our out of the bath

    Its also losing my life as it was, its a grieving process, trying to let go of what I was and accepting what I am now

    Its learning to ask for help, for pushing for help from gps,

    Its thinking about what Ill be like when my kids have their kids, I want to be a good nana

  • i understand all of the above ,,, the fatigue is dreadful ,,, i hate feeling like im stuck in sand moving ,,,

    kauto ,,,, i said it gets worse as the time passes but most drs dont agree ,,,but as i said to one you try having this and tell me that ,, i agree this is something that has no easy answer ,,

    lally i feel same i dont know from day to day what is going to happen ,, i hate the lack of mobility or pushing to do things and the pain left behind ,,,i feel i fail my grandson some days but hes a wonderful kid and at 8 kind of gets i cant do too much xxxx

  • Hiya Trisha, for me its got to be the fatigue followed by the stiffness and the inability to plan too much in advance. I find the pain can be managed with painkillers although I try not to take too many strong ones as I hate feeling spaced out.

    Dont feel like you are failing your family, you may not be able to do too much physically but there are lots of other ways you can be there for them so they probably dont mind you cant run around with them.

    Take care, love Angela xx

  • hi ang :) having really tired day today ,,, i forgot house inspection was due so opened door looking like something catdragged in to poor mr morrison ..id had a bad nifght so took extra meds and was fluent in gibberish ....luckily he left inspection an made me a cuppa bless him :)

    we try and do stuff with grandkids ,, took mikey museum for titanic exhibiton but as yet jason is a bit small hes three ,,, mikey knows when i need quiet time and will cuddle up to watch a film or play on kidzui .. ( great for kids ) ....jason i make stuff with as hes at that age he loves messy play :) and we always make cakes for nursery ,,,, so i do find other ways but i do miss the footy days

    anyway as you can see im in rambling mode ,, chrissie my eldest makes short calls when im like this bless her i forget what ive told her an repeat a lot lol xx

    have good day ang x

  • Other people's ignorance incl the government ...

    Fatigue ...

    I can deal with the pain.

    xx

  • the falling over and the sudden pain

    gentle dyslexic hugs

  • the fatigue as has been said above i can manage the pain most of the time with my meds and the fact that im not able to just get up and go for a nice long walk with nmy dogs anymore or walk anywhere really.

    the dwp for making me fight them and stressing me out with it all , i just wish they understood our condition and how it affects me without making me feel like im making it all up!!

    xx

  • Fatigue and the not knowing what our future will hold will I get better, stay the same or get progressivley worse???

    Soft Hugs, sue x x x x

  • The hardest things for me are acceptance. Not knowing what each day will bring. Not knowing what the future will bring. The Fibro Fog, the fatigue, the pain. Taking Medication. Dealing with the Benefits system and Appeals. Having no money. My home being under threat. The lack of support around me.

  • Not being able ..

    To do the things I used to do ...

    Want to do ...

    Have to do ...

  • The fatigue and unpredictability of its on set. Has to be the worse for me, makes ever thing else magnfid too. Lou x

  • Unporedictability and not knowing if I'll be able to walk far when I need to!! I panic about that. My husband hates it when I worry about it!!

  • I have just joined your group, although have been suffering years. I agree with all the above, No one really understands unless going through it too. I am having a relapse at the moment and can hardly move, the doctor has put me on zopiclone night and day to quieten everything down. It does that all right, have to go for lay down now lol, luvnhugs to all, tc xx

  • Not being able to do what I used to do - the fatigue - Having to slow down without consenting to it! I can put up with pain - most days - And the worst thing is all the ignoramuses out there.

    Gentle hugs,

    Carol x

  • I agree with all the above, I think the worst for me is the fibro fog, my mind is not mine any more and the not being able to walk without falling over at least twice whilst out in town but being too proud or stubborn to give in yet and have a chair!

  • For me it is not having a choice...

    whether to go out for a walk in the countryside

    whether to go away on holiday at short notice

    whether to go and meet my friends at a certain time on a certain date

    whether to just get in car (or walk) and visit my friends and family

    whether to support a friend or family member in need

    Now I know I can't ... I have Fibro and ME .... no choice, no planning. My life is ifs and maybe's and 'shall we if I feel ok's.

  • thank you i agree my life has changed so much i feel older than i am as i struggle to every day chores , i used to be so active and now all i seem to do is sleep take meds and try to reduce the pain what worries me is i wake up and can not move as im in so much pain i think i need to visit the Dr again to change my pain killers as the Tramadol isn't working

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