Hate the name fibromyalgia!

I have always hate the term "fibromyalgia" as basically all it means is muscle pain which is pretty non descript and if that is all dwp or ATOS think " oh it's a bit of muscle pain then they are going to brand us all skivers

Also a uneducated g. P thinking it's just a bit of muscle pain is just as bad

I have always thought renaming it " multi- complex syndrome"

Or maybe multi- faceted syndrome"

But muscle pain Oh Please , it's as insulting as telling someone with a brain tumour they have a bit of a migraine

20 Replies

oldestnewest
  • I agree "it's as insulting as telling someone with a brain tumor they have a bit of a migraine"

    Fibro is sometimes called a Central Sensitisation Syndrome.

    click on link

    fibroaction.org/pages/what-...

  • Hi electricjaws, i agree with your sentiment, i usually say i have a neurogical condition when people ask as i believe it is, but using the term 'multiple and syndrome definately make sense. I do however take exception to the phrase 'a bit of a migraine', I have suffered from severe chronic migraines for years and have had very similar symptoms to a brain tumour. The build up of pressure in the brain has caused severe mental deterioration, affected my sight, my balance, my mental clarity,my memory to the extent i would get lost on every journey no matter how short, not to mention the ability to swallow without choking. Due to a recent change in my many medications i am only experiencing about half a dozen per month at the moment, which has allowed my brain to rest and recuperate enough to think and respond to your post in this much detail, previously it was about 18 a month and i was hard put to remember the names of my own children. The intensity of pain has previously been enough to make death preferable to such a life, this does not include the fibro pain or R A., i apologise if i have rambled on a bit, your comment has obviously dtruck a nerve.

  • Hi Shazzy, so agree with you about migraine. Only good thing is that they ofter get better as you get older. That happened for my grandmother and my mother.

  • Thanks Betty i live in hope, have just been put on pill at age of 50 !

    This is because some of migraines are hormonal so i pray for menopause.

    Shazzzy

  • Hi Shazzy

    i am 57 and yes they are now a lot less. I remember waking up one day and realising it was weeks since I had one and now it is months. I am touching wood like made as I write this!

    However I also found that cinnamon was a trigger, so no more shop curries or apple tarts but I can make my own.

  • Shazzy my friend , I wasn't making light of the phrase I put when I said just calling fibro isn't right it is like telling someone who has a brain tumour they only have a migraine, it was meant to be a comparison of how insulting it is to be told fibro is just muscle pain

    My cousin died last year because he kept seeing doctors and being told it was just migraines by the time they listened and did a scan they found a brain tumour it was too advanced he was given 6 months, tops to live, he was more devastated that the doctors told him it was migraines , it wrecked him to know if something had been done sooner he would have not been terminal he could have had it removed

    3days after the news he hung himself in his garage

    So I am the last one to have meant the comment lightly , I miss him

  • Hi electricjaws

    I sincerely hope that you are feeling as well as you possibly can be today? If I remember my history correctly, Fibro use to have a different name years ago? But I cannot remember what it was? (Fibro fog and exhaustion this evening!). Hopefully somebody who can remember will post it? I do like what you have suggested for names however!

    I am a little surprised that some more of the members haven't given you a (jokingly meant) ear bashing as Migraines are horrid and exceedingly painful. A lady from another forum sent me a PM the other week saying her Migraines were worse than child birth! And I have to agree with her!

    All my hopes and dreams for you

    Ken x

  • Hi ken, it used to be called fibrositis, and something else before that, have had a word concerning migraines, no such thing as 'a touch of migraine' as you know only too well. Hope you feel more with it tomorrow, all the best,

    Shazzzy

  • Hi Shazzzy

    Thank you so much for that, it is the name that I could not remember! I have seen my neurologist and my GP twice in the last two weeks because of cluster Migraines. I reckon that we are heading for some large thunder storms, as I always get cluster(s) when they are coming!

    I hope that your Migraines aren't too bad at the moment?

    Ken x

  • Did you have difficult childbirth experiences Ken??? (giggle giggle). Love x

  • he!he! Hi Jjudith

    Funny you should say that? ...... I have a large protruding lump on my tummy, and I thought it was an hernia ..... When I discussed it with my GP she said my stomach was coming apart ..... Well, I looked that up on NHS Choices and apparently it is a common affliction of middle aged women who have had children!

    I bought a truss and wear it for a few hours a week and it holds everything in place!

    Take care

    Ken x

  • Ooooo Ken just waiting excitedly for your next posting...

  • Don't worry, I will let you know when I go into labour?

  • when I was diagnosed 36 years ago, I was told it was muscular arthritis.

  • Thanks san, I have not heard that term before? I do not really think that it sums up the essence of what Fibro is and how all of it's intricacies affect us though? I actually think it should have a name that recognises that brain impulses / signals are going around the body saying pain, so I think it should be called something along the lines of neuro......something?

    Take care

    Ken x

  • I like that definition! X

  • This is so true. It is a terrible disease and over time it has so many symptoms that my body can't keep up. I agree with you 110%. Most days are a struggle, plus we lose so much we used to take for granted. Multi- Complex is a good name for it as we never know....is this another fibro symptom or something totally different. It's scary at times because you don't know if you maybe in dire need of medical attention or if it's just a new or worse condition of fibro or not. It's terribly frustrating. XXX Mitzi

  • hi there,

    HCP that work for ATOS have been told that Fibro is a recognised illness and must be treat as such. but you can guess what happens they take no notice and say we have muscle pain. well i had my assessment 6 weeks ago and i was lucky the doctor i had was aware of fibro. i have been placed in WRAG but i have asked for reconsideration and i am sending the decision maker print outs of what Fibro is and how it affects people.

    janet

  • Someone suggested calling it Nightingale disease, because Florence Nightingale left detailed diaries of her symptoms for over nearly 60 years, and they are the symptoms of fibromyalgia. She eventually died in her nineties, which was a very good age at that time.

  • being a 51year old woman struggling with severe FM(comorbidity hashimotos),living in Denmark,I was so "relieved"-reassured,to read your art. in the FM Magaz-particularly concerning the problem of the name "fibro"(everyone's familiar with muscle sprains).Having for 2 years suffered from severe neuropathic pain attacks+geniculate neuralgia;I find that name very dismissive-almost insuling.It would,I think, be progrssively helpful-in terms of recognition from "the World" if the disease,as you say, was given the name it deserves.Now that research, has shown FM, to be a severe neurological disease,I see no need to perpetuate the name "fibro".

    With regards K

You may also like...