FIBROMYALGIA IS PERMANENT ??? ISN'T IT ???????

I was told by my GP and the rheumatoligist that diagnosed me last year that fibro was a permanent disabillity i will always have it and it will vary daily/ hourly/monthly/wekly how i feel with it but i will always have it !!!!

i have also read that this is the case too sio why are so many people being told that they cant have certain benefits as it could get better in 2 years ?????

i have had it about 2/3 years and diagnosed 1 year in july but i have got significantly worse in that year so how can something be permanenet on one hand and get better in a toime scale that i cannot believe anyone could possibly know on the other hand ??????

has anyone else been told it is a permanenet dissabillity ??????? surely i am not the onlyone ???

love to you Diddle xxx

15 Replies

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  • Hi diddle,sorry to read your blog on the other side just now.

    But yes Hun once we have it we have for life,as it says on the box "There ain`t no cure".

    As we all know it gets it`s moments of life not being too bad,

    And the wallop another flare.

    And i really can`t understand why the powers that be have such a problem with it.

    Love and hugs Butterfly54 xxxxx

    .

  • I was diagnosed 12 years ago with FMS/CFS and like you I was told there is nothing can be done to help and it is with you for life - in the beginning I had minor aches and discomfort but as time as gone on I am in great pain and suffer all sorts of other problems that go hand in hand with this illness!!! I have also been told twice by medical people that " doesn't it burn itself out after two years? " - errr, no!!! I have been advised to walk more - if only, lol - exercise is very good for me - morons!!( I am in a wheelchair ) I was sent for physio last year and even the physioterrorist told me that it was causing me more pain than helping it!!!! I joined the " Back Group " there just to see if there was anything they could help me with as I also have Stenosis of the spinal Canal resulting in major surgery twice - the last having metal rods, plates and screws inserted to help hold me together! The guy that ran the group ( another physioterrorist ) gave us some exercises one being lieing on your front and raising the top half of your body off the bed .... this I was told would "get the bend back in my spine" - to which my reply was " unless you are Uri Geller - that ain't gonna happen" - had he read my notes I wonder???? Lol. Sorry rambling on a bit now - but I do know how annoying it is when people think they know more about our illness than we do, grrrrr Lots of soft caring hugs to everyone xx

  • Oh angelhugs! I haven't laughed so much in ages :) :) not at your problems. I have a spine full of titanium too.

    It was the term Physioterrorist that did it! I love it and how true. I had one of those sadists on the Pain Management course I did. 10 weeks I spent telling the idiot 'no my back can't do that' and it never did permeate his thick skull.

    I shall be using your word for them from now on.

    happy hugs, kate :)

  • Hi Angelhugs Fabulous saying physioterrorist my chuckle muscles have had a good work out lol, take care gentle hugs Mary xx.

  • Hi kraftyk8 & motzie :) I'm so glad I could bring a smile to your day .. we all need something to smile about whilst we battle with our problems ... thankfully I haven't lost my sense of humour even if my brain isn't always in gear, lol. I hope you are having a good day, bless you and soft caring hugs to all fibromites xxx

  • This thread made me gighle such a humour with such suffering is a medal lol.. Excercise is good ( wherlchair) omg is it not so blinking obvious?!?! Hang on just get out and take the chair for a wheel spin will you .. Tuts . That is how we feel though that we have to show physical signs to get anywhere!! Xx i will take my hairdryer and straightners and ask them can you help me out please i need grooming ohh and deorant and shaving products are in my bag if yo would be so kind ... :-/ darrr ohhh and take your tin of beans as a subject earlier , could you open and have you git a microwave so i can enjoy leaving a few trumplets behind xxxxxxxxx hughhles to yoooooo xxxx funny

  • thanks for your replies i thought i was right but i aint nomedical expert and there are so many things about fibro i never heard of anyone being cured ???? maybe i am wrong as i say i aint no expert and dont know everything but most people on the forum never get better they stabalise and go worse but not better or cures should i say love to you all will prob get someone shoot me down in flaes now lol well i hope i do and i am wrong love diddle x

  • Hi Paradise,

    I'm pretty much like you in that three years ago I couldn't do a thing for myself and spent most of the time in bed or 'resting' on the settee. now, like you, I walk a lot more and don't use my stick much. it still takes me longer to walk anywhere than anyone else and I still have days when I can't do very much.

    It's been better for quite a while now, but I can't help worrying that I might be starting to regress as it seems the bad days are beginning to outnumber the good again.

    I'm trying very hard not to let it, especially as I've got two books still to write this year!!

    I know it's a permanent condition and I know life is going to be like this for the rest of it.

    Diddles, don't let it get you down. Try to stay positive and try to do something to keep it at bay (I write) and hopefully you'll soon learn to manage it.

    Although I feel I'm slipping back, it just means I have to slow down and go back a few steps, start again and soon I'll be okay again.

    It's a case of taking it day by day and acting accordingly.

    If you wake up and don't have many spoons to start with, don't use up the ones you have too quickly!!!!

    Take care of you all xxxxx

  • I have had mine 16 yrs (I was 15 when first flared up) and officially diagnosed in 2007. I have had really bad flare up's in the past 16 yrs, and the main issue I have is the fatigue. I am in a small sense stabilized concerning the pain, but with the fatigue it is a different story (along with my other symptoms).

  • Hi Diddle... you are so right in what you are saying....i had a bad day yesterday, so there was in the shop and low & behold some CAKES appeared in my trolley ;-o wonder how that happend.

    I then realised it was a Diddle moment!!! a great way to cheer me up, so thanks for the cake prescription it does help...you should put it on as a tag lol,

    it is better than any meds.

    Hope you are having a painfree day, take care gentle hugs & keep taking the cake prescription..luv Mary xxx.

  • Hi diddle,

    Yep, it's full time permanent.

    However, we can manage it. Sometimes better than other times and sometimes for longer than other times.

    It's all about finding a combination of medications that work for you, pacing, the right exercise for you, relaxation, distraction, restorative sleep and a healthy diet. Getting all that to balance is very difficult

    Then you need to become an expert, in picking up on the signs that the balance of everything is going out of kilter and then, you have to tweak the right things to get it back.

    No mean feat. I wish I could do it. It's the sleep bit that's my problem, I only ever get a max of 3 - 4 hours a night and I always wake up wondering why I bothered, because I feel worse than I did before I went to sleep.

    hey ho, tomorrow is a new day

    happy hugs, kate :)

  • Let's leave ATOS assessments out of the equation here as so many genuinely disabled people are getting turned down for benefits atm for no genuine reason!

    The thing with Fibro is that though it is a chronic condition, so you cannot get rid of it, it does not have to be disabling so it is not a permanent disability. Even if you have it severely, it can still be managed and your symptoms reduced through treatment so that the condition does not disable you.

  • Hi you are fine imtotallymagree with you 100% it is so true what you say thanks for the back up but it is only my own opinion we are all allowed our own opinions aren t we and i do think like you it is a permanenet disabelling conition but others can have there own takw on it love to you diddle xxxxx

  • Hi lindsay md thanks for that but i am sorryi do disagree with what you say. but there you go we cant all agree on everything can we and thats what good about this forum we all have a right to express our opinions and are free to say what we wish even though we dont always agree with each other, thanks again and love to you diddle xxxxx

  • Hi all,

    Maybe you won't like me posting in this thread (as I am a physio and you all don't seem to like us very much) but I hope I can offer a different perspective. From a therapist's and researcher's point of view I have battled to understand FMS throughout my career. I think a lot of the confusion comes from a poor understanding by many medical practitioners and lack of good evidence to clearly define using a bio-psychosocial model what exactly 'it' is. Yes current evidence defines FMS as a permenant condition however I would challenge this from 2 stand points. Firstly longitudinal studies for the evidence to explain the physical and neurological causes of pain associated with FMS are limited therefore we cannot truly know that symptoms have to be permenant. Secondly maybe symptoms have been defined as being permenant because we are not educated enough to have found the appropriate management strategy as yet.

    This does not mean I believe it is or isn't a permenant conditions but to say that we really don't know and it is important to challenge the status quo in pursuit of a more effective treatment of FMS.

    I think two of the statements above are excellent by LindseyMid and kraftyk8 basically focusing on the importance of the right lifestyle and medical management willl limit the level of disability caused by the symptoms of FMS.

    One of the most interesting papers I read recently researched functional MRI imaging showing differences of those who had a diagnosis of FMS. For me this goes along way to explain FMS as a neural condition affecting the central nervous system, which for me is positive as there is strong evidence regarding neuroplasticity and the capacity for adaptation and change of this system with the right external stimulus. I can provide links if anyone is interested.

    On behaved my profession regarding my unknown colleagues who have been cast with the title "physioterrorists" I would like to apologise for inadequacies in care that my have resulted in this title. I would like to express that we always try to work in the best interests of our patients and sometimes it can be a stressful job and we don't always get thing right.

    I suppose my main focus of this post is to encourage you to educate yourself as much as possible, not only through these support networks but also by reading and researching the evidence available. I have treated hundreds of patients with FMS overs the last 8 years and thousands of patients with many different chronic conditions and one thing I can say for certain is year by year are skills and ability to effectively treat these conditions improves.

    I look forward to hearing your replies and wish you all the best in improving day by day!

    Regards,

    MB

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