Dear all, (was unable to submit yesterday,even though I managed to post a reply on Dr White's post blog some time ago?!)
Before other good Things can come,to FM sufferers,I believe the most pressing problem for the community of sufferers and for the Medical World,to be dealt with, is that of the absurd(for a neurological disease) name "fibro". A more correct name, would change the perspective on the disease-rating it as it's more accurate seriousness.
Are any of a number-worth mentioning-doctors besides Dr White, striving toward obtaining this goal?
What are your stances?
Sincerily,
Kirsten,(AKA KTRANSC).
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KTRANSC
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I think you may find it is a term we use here to other suffers but I for one, always use fibromyalgia when I am talking to people outside of the forum for clarity.
I am in agreement that we would all be taken more seriously in general if this awful illness had a different name, I for one am fed up with the verbal pat on the head attitude, not from my G.P. but people in general. There are so many serious effects on our lives. I had people I don't even know very well come up to me and say they have GOOGLED it and it doesn't exist. All the experts I've seen say it's very real. So yes maybe a name change would be in order, also the information on N.H.S. site does not even come close in my opinion. That is why this community is so vital to me I know I'm not alone.
Fibromyalgia has already undergone one change of name here in the last 30 years, when I was first diagnosed it was as "fibrositis" which was even less potent. "Fibromyalgia (FM or FMS) is characterised by chronic widespread pain and allodynia (a heightened and painful response to pressure)" I think that gives anyone wanting to know what it is a pretty good idea, as it is the Wikipedia entry. I really don't think another name change would achieve anything, just trying to heighten awareness of fibromyalgia as it is would be better to focusing our minds on, another name change could only serve to confuse people further, even sufferers who are struggling enough with things already. IMHO
I was diagnosed two years before 1978 and fibrositis was what they called it then and thought it was just some muscle pain which would mend itself.........oh that it had been such
Personally, I don't see what changing the name would do for people's understanding of the condition, unless the name becomes considerably "dumbed down" (not that people who don't know what it is are thick!). Raising the awareness of profile of the condition I feel would be far more beneficial than renaming it.
I'm in total agreement. the name comes no where close to, it's miss leading and it dumbs down the way the medical profession and society deals with us this is not just muscle pain and CF. It way more complicated than the name states, Fibro is felt in the muscles but it's starts in the brain. What a misnomer. xxx
This forum is a lifeline to me I was quite lost before, my family and G.P are great, however I will now use the full name, fibromyalgia, when asked about my illness and not listen to the GOOGLE brigade .XX
Well restless leg syndrome is the most ridiculous name for a condition I have ever heard, Have had people laugh out loud at a condition that doesn't only affect legs but arms and other parts ofvthe body, causesvpain for many and chronic sleep deprivation.Think fibromyalga soumds better than fibro andvfibro sounds better than restless legs! Lol x
Kirsten, I don't know where I come down on what good would it do and how confusing would it be to change the name. But I am very curious if you have any idea what a better name might be . . . ?
Clare, Maybe you would want to check out the posts of "Electric jaws" and "shazzy"-their feeling about the name fibromyalgia-fibro!I'm somewhat perplexed to have received replies saying that fibromyalgia sounds better than fibro!!?If you read the blog post of Dr. Kevin White,in which he points out that fibro=fibers(tissue)my=muscle algia=pain,belittles the condition,that research has shown to be a multisystemic neurological disease.That fact aside,any patient suffering from the neuropathic pain attacks of severe FM, knows, it's NOT to do with your muscle fibers.In 2014 there are stil ignorant GP's,who view the illness predominantly as a muscle disease.I think it constitutes a real prolem,when Things are not referred to correctly-not of course meaning that a name change in itself,will move Things forward.
I hope it's OK to link to tis video. My understanding is that all his proceeds go to fibro research, totally non-profit. (which doesn't mean there aren't operating expenses to cover, I would guess)
just-to clarify my point-reply to your Q about what a better name would be: As mentioned by Mdaisy,administrator,and in reference to Dr Whites blogpost,I think neuro transmitter dysfunction gives an immediate insight into what's going on in the body of an Fm patient!
Tx Kristen, I watched him on utube but didn't read his proposal for a name change and must've missed Mdaisy's note too. That does seem more clinical a name for it. Thanks for the head's up.
After giving this some long and difficult thought, I am going the idea that it is the medical community that has to change and not the name Fibro!
All my hopes and dreams for you
Ken x
I would have to agree with both Foggy and The author. I refer to it as fibro in here but use the full name when talking to any one outside of the forum. I had thought a name change would be a good idea after reading Dr Whites blog but upon reflection I think The Author has a better point in saying that it is the medical profession who need to be educated more and the general public also need to be made aware that it is not just a few aches and pains.
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