When I see the word Fibromyalgia in print, I know a bit about what I’m going to read; when I see the word fibromyalgia (spelled with a small “f”), that also tells me something. The capitalized form of this word is used almost exclusively by people who have the illness, not people who simply talk about it. The non-capitalized form of the word is commonly used in medical papers, by the press or by multi-personality websites trying to drum up business in the wide open field of chronic illnesses. If they talk about Fibromyalgia a little bit, they will get a few passers by. Personally, I find that whole situation to be revealing and amusing. If you look closely, it will tell you something, too.
I capitalize the term Fibromyalgia because I respect the illness and the people who suffer with it. Also, because it is a specific, singular word that indicates a complicated yet multi-faceted condition. It’s not a general term like cancer or heart problems.
When the word “Fibromyalgia” comes up this week in conversation, tweets or websites, notice how people use it. Do they do so with respect for the condition and the people who suffer with it -or- is there a bit of disdain and lack of passion for the cause? Are they simply trying to flag you down on the Internet super highway? Are they simply purveyors of old, regurgitated data? Or do they have something new to say, something that’s of real value to help people?
I urge you to join me this week in promoting respect for people who suffer with Fibromyalgia, all the while persistently pushing in the back rooms of life for 1) recognition, 2) funding and research -and- the 3) long, over-due answers that are so urgently needed. Yes, Fibromyalgia, the word, the illness and the people who suffer with Fibromyalgia, all merit great respect, but more than that, they deserve good information and help for getting well. And just so you know… your support for the Health Matters Show is greatly appreciated!
Ah, yes. Fibromyalgia, the word, carries many meanings.
Thanks, Cinda Crawford, host of the Health Matters Show
{ 6 comments… read them below or add one }
Dave Mitchell 09.09.10 at 11:31 am
People would understand if small minorities didn’t over play it. Excercise is a great way to help it but so many just sit around thinking it’s the end of the world. If you sit around all the time then natural aches and pains occur. Exercise helps me so much.
Cinda Crawford 09.09.10 at 2:54 pm
I understand that exercise helps you; you’re lucky! So many Fibro people think exercise is an absolute “No No”, when it actually is a good therapy for some. It does help IF you can do it and not cause more symptoms or a full-fledged bed-worthy attack. Being flat out on your back after something does not make it worth doing. If you can do a few things, I always suggest that people build up to doing more gradually. For the very sick, sometimes that is not a possibility at all. It all depends on the person and the degree of illness. BUT…. if you can exercise, don’t stop. That is really good advice that I received and believe in. You never know when is your last day to be able to do something -or- if it will be the pivotal day to move forward and do more. Don’t stop.
Julie 09.09.10 at 6:42 pm
I think this is just another case of semantics. I have Fibromyalgia and I respect it, but I may or may not capitalize it when talking or blogging about it. I’ve never really put that much thought into whether or not it should be in caps, any more than I worry about whether it should be spelled out or if it’s ok to shorten it to Fibro.
There’s enough bad feelings in the world towards people without creating more by saying something like this and making others look poorly at someone else’s use of a term they may or may not understand.
Cinda Crawford 09.09.10 at 8:35 pm
Thanks “Fibrokitty” Julie for your reply. Your thoughts are very wise. Surely no harm is meant either way. It’s simply that the illness is generally spelled with a small “f” when the media and medical establishment are talking about it. That’s all. Just an observation.
Joanne 09.13.10 at 1:22 pm
I never gave Fibromyalgia much thought until my symptoms of arthrits and muscle weakness became constant and my Rheumatologist said it was Fibromyalgia. As symptoms deteriorated another Rheumatologist said it was ME/CFS something my GP did not accept, then as symptoms really deteriorated I was given Steroids for a Polymyalgia Rheumatica diagnosis and my symptoms APPEARED to improve, (if only I had known how bad steroids are for someone battling an infection) at that time I was pretty ignorant about most health care problems having had a healthy life up until 2003.
In 2007 a chance course of antibiotics given for a chest /sinus infection significantly improved my symptoms and led my GP to suspect Lyme Disease. Later this was confirmed by a private doctor specialising in this illness and on long term antibiotics I have recovered nearly 100%.
Now every time I hear the word Fibromyagia or ME/CFS I wonder whether in time that person’s symptoms will deteriorate like mine did and also if they too could be suffering with Lyme Disease.
So little is publicised about Lyme Disease amongst the Fibromyalgia and ME/CFS groups but many of the good ME/CFS doctors do recognise that it is not uncommon in their patients and some like me respond well to long term antibiotics, of course the doctors following our health authority guidelines never give it a passing thought and if they do they deny it vehmenently even though they know next to nothing about it.
An e mail I recieved from Kenneth Friedman said that research showed 30% of ME/CFS sufferers had Lyme Disease but getting doctors to assess them for it was difficult. He said I was one of the few and one of the lucky.
How right he was.
How many people have years of chronic illness with horrendous pain from arthritis and weakness in the muscles that meant I could not walk up or down stairs properly for 3 1/2 years, at my worst I had difficulty standing from a chair and walking across a room and now I can garden and cycle, on just treatment with antibiotics.
Sadly most of us are indoctrinated to believe all our doctors tell us and clearly with many illnesses knowledge can help guide our doctors and find better treatments for us.
Cinda Crawford 09.14.10 at 9:30 am
Thank you Joanne for your excellent comment. I suspect that Lyme is either “the” illness or certainly a co-factor in a lot of Fibro & CFS cases. I know I had it, yet diagnosis was difficult and honestly, shunned as an idea. I would love to talk with you about this more at length. I certainly am happy for you that you had such good results…. although I’m worried about your gut lining in taking so many antibiotics for so long. Have you embarked on a program of taking the “good bacteria” or a good quality bifidus? Let’s keep talking! If you want to take this offline for personal reasons, contact me at cinda@getwellhealth.com.
Thanks again! Cinda