Is Fibromyalgia the right name?

The Author Dr Kevin White poses the question of renaming Fibro Nightingale disease, after Florence Nightingale reported to have lived with Fibro.

What are your thoughts after reading the article, link below;

thefibrofog.blogspot.co.uk/...

Could a name change drop the stigma? Would any other names be better?

Multiple Neurotransmitter Dysfunction or Complex Pain Processing Disorder - just random names that comes to mind even tho I quite like Nightingales !

However what do you think?

Looking forward to reading the discussion

Emma :)

FibroAction Administrator

32 Replies

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  • Hi, thanks for link - an interesting article.

    I agree a name change could help (my daughter calls it Fibro-meow), but also a reclassification! It surprises me that we are still referred to rheumatologists when there seems to now be recognised evidence that it is the nerves/receptors causing a lot of the problems. Surely we should be being treated by neurologists ?!

    Not sure about calling it nightingale disease though - most people think of Florence nightingale as a tireless, hardworking nurse, surely that would lead people to think that this illness is NOT as debilitating and disabling as it actually is and mistakenly believe that we are all able to function normally and hold down demanding jobs.

    Like sound of multiple neurotransmitter dysfunction - sounds much more accurate. xx

  • My Neurologist treating my Migraines is the one who diagnosed my FM ...

    I agree that Nightingale is a bit of a misnomer, and not the direction to go ~ since "Florence's reputation is that of a tireless worker" ...

    But, "Dysfunction," to me, is right there with "Syndrome" ... isn't it ... as in FMS? Another word for that ONE?

  • Very interesting! My rheumatologist refused to use the word fibromyalgia... he calls it "Pain amplification disorder".

    My own personal favourite is "irritable everything disorder".

    Fibromyalgia really does sound like "just" muscle pain, so a new name would maybe help others to realise the huge variety of symptoms that are involved. Xx

  • Hello Phlebo123,

    Pain Amplification Disorder is another name that is descriptive about the intense pain we experience. It has been called Central Senstisation Syndrome.

    It's a difficult thing to rename taking into account the variety of symptoms.

    Thank You for your comment

    Emma :)

    FibroAction Administrator

  • Given that many in the medical profession still have the attitude of it being a condition for "middle class middle aged women"- description heard to a junior medical student only last week!

    I am not sure associating it with Florence Nightingale would help.

    After all would they not just abbreviate it to F.N condition!!

    If a name change is required then it should be something that would give the condition the gravitas it deserves.

  • That is a very interesting article, and very straightforward. Nightingales Disease is definitely better that Fibromyalgia and as he says easier to both say and spell. The only thing is it doesn't relay the problem, but then what disease name does. given a choice I prefer your suggestion of Multiple Neurotransmitter Dysfunction it might not be dismissed so readily :)

  • Classifying as a disease not a syndrome would be a positive step as a start point, the next would be having neurologists involved as they have a poor history of taking this condition seriously whatever it has been called. It has only been labelled as Fibromyalgia Syndrome since about 1993 when Fibrositis was a common label for something that little or no treatment was available for so changing the name does not appear to have given any street cred amongst the medical community in the last twenty years.

  • Either of the first two names sound like a medical condition.Nightingale sounds too birdie.(my sense of humour)

  • Prefer the name Multiple Neurotransmitter Dysfunction, has it holds more gravitas. I agree that we are often not taken seriously, I see doctors glaze over when they hear the word fybromyalgia, they do not take us seriously if they had to put up with the pain and discomfort we experience on a daily basis they would take us more seriously. I feel our illness is on a parr with such diseases as ms but we get little or no help. We are the poor cousin to other similar diseases.

  • Hello Ktatmolehole,

    I agree, in fact to describe it I often on a personal level say it's in between MS and ME to people around me. This does seem to help understanding as MS is widely recognised and ME very slowly becoming more and more accepted.

    The severity is quite similar and yet it is not recognised as such. Also figures like around 2 million living with Fibro in the UK and other illnesses like heart disease I saw on twitter yesterday with similar figures yet much more widely discussed! Seems crazy !

    Thank You for your ongoing support of FibroAction, let's continue to raise this much needed awareness together!

    Emma :)

    FibroAction Administrator

  • think I will start using the multiple neurotransmitter dysfunction name now!!! fibro doesn't mean much to anyone but the sufferers xx

  • I have spent time thinking about this and have come to the conclusion that Nightingale disease makes it sound like a type of bird flu. Adding Florence to it brings to mind elderly ladies. Not something the younger people or the men in particular would appreciate and at a guess, not many of the younger generation would know about her.

    I agree that a name change would be beneficial and I also agree that the name Multiple Neurotransmitter dysfunction is so far the best suggestion. not even the letters MND can be taken to mean anything else,

    No offence meant to my auntie Flossie or any one else with the name Florence. :)

    sue xx

    Oh and I was diagnosed by 2 Neurosurgens and a Rhumotolagist who admitted that he knew very little about Fibro. whereas both Neuros knew their stuff.

  • MND is already used by Motor Neurone Disease otherwise would agree the neurotransmitter malfunction is an accurate description of the condition.

  • I knew that the letters MND sounded familiar. Ill put it down to late evening fog. :)

  • Know the feeling :-)

  • Hi Emma, i agree with most of the posts so far. Multiple nuerotransmitter dysfunction explains so much better what is going on. Like you i think nightingales sounds nice, but conveys nothing of the disease. I agree with dr White in that the name fibromyalgia is misleading and belittling a very serious condition. I prefer MND, or similar which will make the medical profession and the general public think of the extent to which we are afflicted. I do think we should be seeing neurologists, all the latest medical results indicate this. Maybe we should start an online petition to have fibro reclassified?

    Shazzzy

  • Hello Shazzy,

    It would be great if we could petition to get it reclassified by the World Health Organisation to Neurological! This would be a good start at the illness being more accepted and recognised!

    I've found this British Medical Journal article today, let's hope more professionals read it !

    bmj.com/content/348/bmj.g1224

    Thanks for your comment

    Emma :)

    FibroAction Administrator

  • I agree a petition would be a good start. We need to make more people aware as to how debilitating this disease is and we need better care from our medical practitioners. People who suffer from ms have regular appointments with a neurologist, they have a named nurse they can contact, free prescriptions etc. What help do we get nothing. I was sent to a specialist rheumatologist once, he diagnosed my condition gave me a booklet, apologised that there was not enough funding to help people who suffer from fibro and nothing else he could do so signed me back into the care of my doctor. So all I am left with is managing the condition with a whole heap of drugs and keep bugging my doctor for help when things get rough. I felt a sense of abandonment and despair at first.

    We need to shout louder and get more care from the medical proffesions.

  • All very good points - Thank You for adding

    You may be interested or remember our poll below;

    healthunlocked.com/fibroact...

    You may or may not have seen this article in the guardian recently;

    theguardian.com/society-pro...

    They say they want to address long term diseases! Early diagnosis and effective treatments would be a good start however they need to listen & also do the above with long term management similar to what you describe some MS may receive. As you say I have felt exactly the same as you a sense of abandonment and despair which my partner has also mentioned how he battles for me when really ill only to meet a brick wall.

    You bring up a very interesting discussion about management of Fibro. As you may know, FibroAction are part of the prescription coalition fully supporting many long term conditions to receive free prescriptions.

    To support please see website

    prescriptionchargescoalitio...

    Interesting comments, Thank You

    Emma :)

    FibroAction Administrator

  • Worrying how much of the BMJ article is spent trying to dispel the somatism myth medical professionals hold onto in such large numbers. Until we can get past is it real ? a discussion that should have ended long since, names will remain contentious as with M.E (registered as a neurological condition with WHO since 1969) called CFS by the medical community or as a grudging compromise ME/CFS . As most compromises it has little merit for either side and causes researchers difficulty defining the condition a possible excuse for so little biomedical research in the UK.

  • Agree MND better name

  • I like the descriptive, 'twenty-five syllables', name! LOL!

  • I think a name change would be a good idea to help dispel some of the myths and stigma. Not sure Nightingale's would do that though. Really like your suggestion of Multiple Neurotransmitter Dysfunction though - it does what is says on the tin and and conveys the complexity of the condition.

  • I agree with MND ,there is such a stigma to fibroetc ,people think it's a made up malingra lazy person ,they have know idea of the effect it has .

  • This is a really interesting post! And I have often thought a name that indicates the brain sending messages would be more apt? I really like sound of multiple neurotransmitter dysfunction, and Nightingale disease almost has a beauty or romantic connotation about it?

    Thanks for this post, I will keep checking on this to look for any consensus?

    Ken x

  • i prefer the name multiple neurotransmitter dysfunction it explains much better what is going on.

  • I really like the Multiple neurotransmitters dysfunction idea but just thinking that if it is shortened to MND it might be confused with Motor Neurone Disease?

    Thanks for link to article, very interesting!

  • Well it's certainly got everyone talking and those made up names where just of the top of my head! Yes the initials may be confused with the real MND anyway it is not like it's on the cards just an interesting concept by Dr White about a change of name ! :)

    Thanks for your comments - Keep em' coming ! :)

  • I wish we could find out exactly what it is! That way we could put a definite

    name! Chronic pain, fog and horrible

    chronic fatigue syndrome lol!

    To long huh??

  • I like the name Multiple Neurotransmitter dysfunction its a good explanation of whats happening. If I say fibromyalgia to people they blankly say whats that and when you try to explain it they go oh you are just stressed!

  • Just a thought. It probably makes the name too long But how about if Neurotransmitter was split in two. Making the tongue twister. Multiple Neurological Transmitter Dysfunction.

    MNTD. Harder to spell than say, :P but then a lot of people are very impressed by long words. :D

  • this conversation is so interesting, id like the name to be changed too :) x

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