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  • FIRST POST
    Lindsey1948
    Fibromyalgia
    • #1
    • 22nd Oct 08, 3:21 AM
    Fibromyalgia 22nd Oct 08 at 3:21 AM
    Thought I would just introduce myself, I suffer from Fibromyalgia, and have just joined this forum. In 2007 I had cancer of the uterus and have successfully had it removed. I also have a walking disability caused by a fall in 1995. I also became diabetic last year. There has been a suggestion recently that FM/Thyroid problems (I have underactive thyroid)/Diabetes are all linked.

    But life is good , and although Im disabled, I worked full time until 2002, then took 18 months off whilst I learnt to live with the FM, and then did a year part time as administrator at a local youth centre, I liked it so much I have been a volunteer there 1 day a week ever since, keeps me young thinking!! I officially retired in April this year, and although I receive pension and pension credit + DLA and a small amount of company pension, there are days when finances are tight. I lose most of my DLA to the motability people so that I can feel safe in an up to date car that I know wont cost me money to insure/tax or repair/service. (I keep the low rate care).
    Just wanted to know if there was anyone else on here with FM, and any ideas for coping stategy's regarding energy levels/pain management etc.
Page 5
    • POLO_BINT
    • By POLO_BINT 27th Oct 08, 9:24 AM
    • 5,563 Posts
    • 31,339 Thanks
    POLO_BINT
    Morning people!!! Can't believe I am up, showered, dressed and have my make-up and hair done already!!!! OH thinks i'm losing the plot as I am never up and about "properly" until gone midday!!! Woooohooooooo!!!! Just need to clear the ming fog now and i'll be set for the day! After catching up with all your posts early hours of this morning, I have decided that I am going to try not to moan once today! (need to give OH's ears a rest I think lol) So... mission is to see how long before I end up reeling off each and every part of my anatomy which is hurting Its gonna be tough, I have commissioned OH in to timekeeping! I think half the time I say to OH where it all hurts may be out of habit! I am totally fed up with saying to him i'm in loads of pain when he asks how I am feeling. I know he understands and knows i'm in pain all the time and in every part of my body, so have decided it is pointless moaning about it all the time.... So here goes..... Have a fab day everybody!
    Ple'ma an bysva?
    • poohbear59
    • By poohbear59 27th Oct 08, 11:32 AM
    • 4,827 Posts
    • 55,836 Thanks
    poohbear59
    Morning people!!! Can't believe I am up, showered, dressed and have my make-up and hair done already!!!! OH thinks i'm losing the plot as I am never up and about "properly" until gone midday!!! Woooohooooooo!!!! Just need to clear the ming fog now and i'll be set for the day! After catching up with all your posts early hours of this morning, I have decided that I am going to try not to moan once today! (need to give OH's ears a rest I think lol) So... mission is to see how long before I end up reeling off each and every part of my anatomy which is hurting Its gonna be tough, I have commissioned OH in to timekeeping! I think half the time I say to OH where it all hurts may be out of habit! I am totally fed up with saying to him i'm in loads of pain when he asks how I am feeling. I know he understands and knows i'm in pain all the time and in every part of my body, so have decided it is pointless moaning about it all the time.... So here goes..... Have a fab day everybody!
    Originally posted by POLO_BINT
    Thanks, I totally agree with you.I have been trying to do the same, only say positive things. The sun is shining so I think I will go outside for a little wander in the garden.
  • Careful with that Axe
    I agree to looking on the positive side of everything. It means you live despite your problems rather than with them iyswim.
    I can't walk very far now, but it means I can wear the most ridiculous shoes because I can't walk far enough for them to hurt my feet!
    There's a plus side to everything - you just need to find it.
    I must go, I have lives to ruin and hearts to break

    My attitude depends on my Latitude 49 55' 0" N 6 19' 60 W
  • beeka
    Im on amitryptiline 150mg and yes, I have put on a little bit of weight, but my face gets puffy sometimes at this dose, I think it could be water retention or something, I read somewhere that if you're on ami you should avoid salt, as that's what makes you puffy IYKWIM.
    Originally posted by septemberblues
    Thanks! That's really helpful and glad to know my puffy face may be because of the drugs.

    @ gipsie - thanks for the offer but I don't think you need to keep posting it, if people want to join your group they will do so through your earlier post. I'm very happy here for now for all the reasons already stated. I'm feeling very supported and at home, even if only in a 'virtual' way!

    OOPs also meant to say hope you're all doing well as possible today! xxx
    • nephasu
    • By nephasu 27th Oct 08, 1:20 PM
    • 96 Posts
    • 27 Thanks
    nephasu
    fibromyalgia
    Hi all fellow Fibro sufferers, i'm Susan and ive been diagnosed with fibro for 2 years now, 1 year after having an accident at work.

    We all know how difficult it is to accept this condition, coming to terms with the changes you have to make, realising that you will never be back to the way you were.

    Like many i cannot work anymore, and being in my early 40's was very hard to accept.

    Ive tried accupuncture and it made me worse couldn't move for 3 weeks.
    But Reike has had a profound effect on my life as it enables you to calm yourself down and helps with reducing the pain.

    sending love to all my fellow sufferers.
    xxx
    • natzini
    • By natzini 27th Oct 08, 1:22 PM
    • 560 Posts
    • 5,634 Thanks
    natzini
    Hello everyone! Nearly said good morning, but realised it's the afternoon. Been up since the crack of dawn, then realised I could only have water as I had blood tests this morning, one of which was a fasting one. Got back and threw up, have felt awful ever since.

    If anyone is on Facebook there are some great Fibro support groups on there, and I'm a member of FMS SAS so if anyone wants details on that fabulous support group, please pm me

    Half term but I have loads to do. It's quite shocking actually. When I get back from work I barely have the energy to heat up some food, so the flat gets ignored, so that needs to be dealt with! Plus we need to get some quotes for our shower and hot water tank to be fixed... wish me luck!

    Un sou est un sou
  • raeh
    Good afternoon everyone, i hope we are all having a good day
    Half term so even though i have a week off which is lovely im needing more energy as the kids will be wanting to do things lol


    Gypsie i apologise if i sounded negative to your help group, i never meant to come across that way, its just that when i first had my formal diagnosis [and i know that was a lot of years ago so attitudes have changed] i was put in touch with a couple of groups to help me adjust and i found that they left me feeling very depressed as the people were very negative about their 'condition' and told me about all the things they couldnt do, thats not what i wanted to hear, i wanted to know everything was going to be ok?? naive maybe? I was left for quite a while thinking this was the way the rest of my life was going to be and i was only in my late 20's, for quite a while i focussed on what i couldnt do and made everyones life miserable and then one day just thought s*d it, i cant have this and concentrated on what i could do when i was well enough and went back to work [they were brilliant letting me go part time and only mornings] there actually isnt much i cant do now,albeit in pain and always knackered afterwards but im living again.
    Again im sorry if you feel i was negative towards your group but i find threads like this with likeminded people far more helpful as this is only a small part of me being on mse?? i hope that all makes sense and to everyone else i apologise for rambling on, you may find i do that quite regularly when i get started lol

    good luck with your quotes natzini
  • raeh
    I agree to looking on the positive side of everything. It means you live despite your problems rather than with them iyswim.
    I can't walk very far now, but it means I can wear the most ridiculous shoes because I can't walk far enough for them to hurt my feet!
    There's a plus side to everything - you just need to find it.
    Originally posted by Careful with that Axe

    i love your thinking i did the same recently, bought a pair of shoes for a night out [only have about 2 a year so pushed the boat out] and figured they were far too high to walk in but as i cant walk far anyway what the heck
  • atc28uk
    Hi all..
    Thought id join this site after reading through this excellent post..

    I have for the last 8 years been suffering with what I now think maybe FMS, it all started after a rather nasty stomach infection which I never fully seemed to recover from...

    Over the years I have been back and forth to the doctors due to near constant pain, feeling dreadfully unwell, low mood, inability to sleep and even when ive managed to I feel worse than I did before etc etc... Ive been told it was depression, anxiety, tendonitis etc but the docs always seem to have this look on there faces that says "Heres another lazy lay-about" and that is the wall I have always found the most difficult to break down... I get extremely frustrated that I dont look more ill cause I honestly feel that most of the time your judged on appearance, I wish I could let my personal hygene go or let myself look unkept but I cant, as most people who have been in pain for a period of time will tell you, you have to adapt your lifestyle to compensate for your illness... Lookin fresh and bright doesnt mean I am not in pain/feeling down etc...

    I have just had spine surgery, fusion, disc removal and a wallice implant and am in my final week of total bedrest before the physio work commences, which im dreading, not because I dont want to get better but because i dont want the agonising muscle pains that accompany it........

    I suffer with spine probs, stomach ulcers, barretts, ibs etc and while in hospital for the spine op one of the nurses mentioned I should get check for FBS cause it could have been this all along that could explain alot of the problems ive had, finding this fantastic post has made me even more determind to seek further help as soon as im back on my feet...

    Oh im a 37 year old male....lol...

    Goodluck and better health to everyone...
  • raeh
    good luck atc28uk, keep asking questions and maybe try to see a different GP as thats when i was told about fms after years of the same gp telling me it 'must be' arthritis pains!!

    i hope your physio isnt too bad for you xx
  • Careful with that Axe
    raeh, I understand your feelings about some self-help groups. Mum went to one local Lupus group and they were very much "No, I'm far more ill than you!". She never went back.
    The thing that upset me most profoundly was that at her funeral we had a collection for Lupus and raised may hundreds of pounds. We never got so much as an acknowledgement from them.
    I sortta feel that self-help groups aren't for me, horses for courses etc.
    I've now been inspired by Polobint to go and "do" my hair after a bad hair 3 years
    Have a good afternoon all - we rock!
    I must go, I have lives to ruin and hearts to break

    My attitude depends on my Latitude 49 55' 0" N 6 19' 60 W
    • natzini
    • By natzini 27th Oct 08, 3:25 PM
    • 560 Posts
    • 5,634 Thanks
    natzini
    i love your thinking i did the same recently, bought a pair of shoes for a night out [only have about 2 a year so pushed the boat out] and figured they were far too high to walk in but as i cant walk far anyway what the heck
    Originally posted by raeh
    You have the same thinking as I do! You have to stay positive through it all. I get really sad sometimes but I was diagnosed 3 years ago at 26 and there is no way I am going to go through the rest of my life with a bad attitude, it just won't work, or be me being who I am.

    Un sou est un sou
  • raeh
    thats just ignorance careful with that axe and nothing else to not acknowledge a donation!!!

    and inspired by my fellow sufferers [and after living with bad hair and face for many years!!!] I am going to give myself a full face of make up and most fabulous smokey eyes even if i wont be leaving the house!! Thats my almost at the end of october resolution.....look good, as if im off out somewhere even when im not.
  • Careful with that Axe
    Go for it! I'm going to do the opposite - give myself a mini-facial.
    Hope no-one knocks on the door when I have the homemade porridge face mask on
    Will also have to stop myself licking it off :rolleyes: I have the munchies
    I must go, I have lives to ruin and hearts to break

    My attitude depends on my Latitude 49 55' 0" N 6 19' 60 W
  • beeka
    raeh & careful with that axe - that's exactly my experience too. I have met some lovely people whilst attending various groups and courses, but there have always been these dominant characters who just want to complain and they really take over and spoil things for everyone.
    It's good to be able to share, because that tells you that you're not alone; it's good to be able to tell others that a particular pain or health issue is going to be a problem for you today, because it's reassuring that they'll understand where you're coming from; it *isn't* good to hear constantly that life is crap etc, we have enough of that going on our own heads without getting drowned in it from someone else.
    The way I see it is that yes I've had some awful s**t to deal with in my life, not just Fibro, but there are plenty people who are far worse off than me. So, it helps to come here for the solidarity and to see what tips everyone has, and to be understood. Beyond that, I'm trying to keep my eye on the good things and keep going towards that as much as possible.

    Hope you've all had a lovely day and are about to have a restful evening
    xxx
  • beeka
    Oh dear... it looks like I have killed this thread! Sorry! Hope I didn't offend anyone? :confused:

    Anyway, I hope you're all feeling ok as can be this morning and that the freezing cold isn't causing you too much pain - get snuggled up in your duvet if you can!
    Get busy living, or get busy dying.

    - Andy Dufresne, The Shawshank Redemption
  • Careful with that Axe
    Not at all beeka. I wonder if I'm alone in being a very late riser?
    I struggle to fill my days sometimes without the structure of work and find that in the evenings I'm more comfortable (as I've more pain relief on board) and can entertain mysef with TV etc. So I tend to stay up til 1ish and then, partly due to the "disease fatigue" can easily sleep 12 hours.
    I try to get up before 11am, but then mooch about for several hours until meds kick in.
    I am constantly being criticised for this by my Dad who is a very early riser and I do sometimes think I'm out of synch with the normal world.
    It's partly fuelled by living alone (apart from the moggie).
    I've never asked about this before, but am I alone in doing this?
    Anyhoos, the rain has stopped today and the sun is doing it's best. I was given some bath bombs, so my daily hot bath will be an extra special treat today!
    I'm going to motivate myself to doing some housework in the bedroom with this to look forward to at the end of the day. That and some Ben & Jerry's that I've discovered since my Dad gave me his old freezer!
    How is everyone else?
    I must go, I have lives to ruin and hearts to break

    My attitude depends on my Latitude 49 55' 0" N 6 19' 60 W
  • beeka
    TBH I've always been a late riser because of the Fibro, even to the extent that I changed my work patterns. I am starting a new job though in 2 weeks so at the moment I'm trying to give myself an earlier routine that I can manage.
    I have to say it is a bit scary to me to consider that I might not be able to work in the future as so many here seem not able to manage it. I'm really hoping that I can manage the pacing and routines well enough to work for as long as possible. To do this though, I've taken a drop of a third in my wage so that the work is work I can do with my eyes closed (hoping it won't come to that though!) and still be able to do everything else I want to do - it's scary though because until I start I won't know whether I'll cope...
    I find that I'm not an early bird but also not a night owl - my best time is from 10ish till 1300 :rolleyes: not great...
    Ah well, I can only try!
    xxx
    Get busy living, or get busy dying.

    - Andy Dufresne, The Shawshank Redemption
  • raeh
    good afternoon, i dont get up late as usually im out at work early but if i was left in i think i would sleep the day away and still not feel rested lol. Its better for me to get up at the same time even though its the holidays as my back is terrible when i lie in.
    Beeka i worry about being too tired to work but i find as long as i rest when i need it in the afternoons and usually use the whole weekend for recuperation im ok? i know everyone will be different but i do think its all about the way you view things? and im not giving in to any blinkin 'illness'

    Does anyone else have the trouble i have though? i have this especially with a friend/neighbour..... because im a stubborn cow and never ask for help and say i cant do something [id rather struggle through until im collapsing] she thinks that the fms cant be that bad! and if anyone asks how i am my standard answer is fine thank you

    anyway i hope you are all coping ok with this horrible icy cold weather x
  • Careful with that Axe
    Absolutely with you on that raeh. I became very proud of my independence when my second marriage ended and now, asking for help feels like defeat.
    However, I'm always grateful if someone offers as it's a lot easier to say "Yes, please" when you do need a hand that to ask.
    Ths sun lasted all of 5 mins here, and there wasn't as much needing doing in the bedroom as I thought, so I've rewarded myself with a bowl of Strawberry Cheesecake ice cream. :rolleyes:
    Am off to Theatre on Sat to see an Agatha Christie production and have just been persuaded to book a ticket to see Caberet. I've seen neither the film nor the stage show and had been dithering for a while as there's no matinee available.
    But I've been and gorn and done it

    Hope everyone has found something to smile about today.

    Now, hot bubble bath or ironing??
    I must go, I have lives to ruin and hearts to break

    My attitude depends on my Latitude 49 55' 0" N 6 19' 60 W
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