Songs of the moment update ;)

Explaining Fibromyalgia To Others


Fibromyalgia Eye

BY: Kristin Thorson (Fibromyalgia Network Editor)

“Do you understand what causes your fibromyalgia pain and can you easily explain it to others? According to a study by Robert Ferrari, M.D. and a team of primary care physicians, these two questions are the source of frustration among most people diagnosed with fibromyalgia.
“Fibromyalgia patients have long been described as having a disorder that lacks face validity,” writes Ferrari. “The feeling or implication that one’s symptoms, especially pain, is described as ‘medically unexplained’ is of concern to patients, to the point of being offensive.”

Why shouldn’t you be a bit unnerved when your condition is put in the “medically unexplained” category? It implies your illness is poorly defined, despite three FDA-approved drugs for treating fibro and more than 20 years of active research on this condition.

“Patients have indicated exactly this: while the diagnosis may confer some legitimacy, it does not improve their understanding of their own illness, nor help them explain their illness to others,” writes Ferrari. Based on this perception, he compared a group of 104 fibromyalgia patients to a group of 272 “other” chronic pain conditions. This latter group had either rheumatoid arthritis, whiplash-associated disorder, osteoarthritis, tendinitis, bursitis, or back pain.

Ferrari found people with fibro were four times more likely to have trouble understanding and explaining their pain to others than people in the group of “other” disorders. Admittedly, the diagnosis of fibromyalgia has been controversial and patients are stigmatized for having such a wide range of symptoms. However, many patients in the “other” group had ill-defined or difficult-to-describe conditions as well.

Whiplash is a highly controversial disorder,” notes Ferrari, “and rheumatoid arthritis patients have only ‘autoimmune’ and ‘inflammation’ to rely on for explanation.” Despite the complexity of these terms, rheumatoid arthritis patients feel confident understanding their pain and explaining it to others. Ferrari found patients with tendinitis, bursitis, and back pain often view their pain as a form of arthritis, which is what they told others. While this belief is incorrect, it sure makes life easier.

“It is not accuracy and proper explanation that matters in one’s sense of understanding,” claims Ferrari. Perhaps people with fibromyalgia have too many symptoms and too much information about their likely causes, which makes it more difficult to put into a few words, like “arthritis” and “inflammation.” For whatever reason, people tend to automatically understand these two words mean serious pain.

Attempts to explain your fibromyalgia in terms of everything that is going wrong in the nervous system and the muscles could be overwhelming. After all, scientists are still trying to iron out the details of what causes fibromyalgia pain and other symptoms. Although describing your fibro in terms of current research findings may be more accurate, it could also be an added burden you don’t need. Maybe if you just said you had widespread arthritis (even though you know this is not the case), life would be easier.

Knowledge is power for helping you adapt and understand why certain treatments may reduce your fibromyalgia symptoms. But when it comes to everyone else, view the explanation of your fibro on a need-to-know basis, with less info being the easiest for most people to grasp.” -Kristin Thorson

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10 Reasons To Increase Fibromyalgia Awareness

10 Reasons To Increase Fibromyalgia Awareness

by Purple Law Lady

Fibromyalgia Awareness Day May 12th 2012

  1. As we all know, it takes some people years and years to find out what is wrong and finally be diagnosed. If everyone knew all about fibromyalgia, then people could be diagnosed earlier. There would be  less of those depressing years of searching for answers.
  2. Sufferers will feel less alone – they will see posters and information booklets EVERYWHERE, giving them tips on how to cope.
  3. Doctors will become more interested in our condition and start investigating (and keeping up to date with) the newest medications and treatments, rather than ‘It’s Fibromyalgia – there’s nothing I can do.’
  4. Medical researchers and scientists will be more interested in finding a cure! Nobody wants to spend their time looking for a cure for something that no-one has heard of, they all want to cure the illnesses that people know about!
  5. We will no longer have to answer questions such as ‘Fibro-my-WHAT?’, ‘Fibromyalgia? What on Earth is that?’ or ‘Is that even real?’ No more long difficult explanations of the never-ending symptoms.
  6. People may even become more understanding! Relatives and friends will understand why you don’t feel up to partying. Employers understand why you have limitations and will be able to give you suitable arrangements because they will know what they are dealing with.
  7. Advertising companies will realise that there are a LOT of us and will design fibro-friendly products such as ride-on vacuum cleaners, ergonomically designed car seats, etc.
  8. More support groups will be formed as a result of more people realising that they have fibromyalgia.
  9. More people will donate money to research to find new treatments and… dare I say it… maybe even a cure!
  10. Because it makes you feel good about yourself!! You aren’t just doing this for yourself; we are doing this as a TEAM EFFORT! We need to reach as many people as possible to make this a success.

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Fibro Haze

#Fibro - Awareness Day

Fibro Haze

Once again, I spend my days, floating in a fibro haze.
My minds a mess, my thoughts a vapour, I can hardly put pen to paper.
An indistinct or billowing mass, my heads in the clouds again; Alas!
A transparent word, not rude nor absurd, gives rise to a frowning aggravation.

Once again, I spend my days, floating in a fibro haze.
Vague, indistinct, is that right, I’m sure; I think?
Obscure thoughts fog my mind, until the perceived I suddenly remind.
Misunderstood flushes of trance, a waking sleep of sleight of hand!

Once again, I spend my days, floating in a fibro haze.
Withered and torn, wish not I was born, especially in the winter.
On a cold day, please go away, or I am likely to eat ya!
It’s not that I hate you, it’s not that I don’t care, it’s more like my mind, just isn’t there.

Once again, I spend my days, floating in a fibro haze.
Running on empty, without any diesel, that’s not an excuse for hurting people.
And why do you sit there, hating yourself, does not your family, not give you self wealth?
It’s cold out here, it’s dark and it’s lonely, it wouldn’t be so bad, if someone would hold me.

By Stuart Otway-Smith

An attempt to describe in poetry what Fibro Fog feels like, a symptom of Fibromyalgia / Chronic Pain Syndrome.

National Fibromyalgia & Chronic Pain Association
Mark the date for May 12 National Fibromyalgia Awareness Day! Registered & Protected

Day Fortyeight:

Starring at an empty page with nothing but an empty gaze.
What to write what to say, what point to make today.

They say that time heals all wounds.
Does that mean it won’t hurt soon?

As I ponder in fibro haze, it matters not what others say.
A healing hand of loving light is what I want for all tonight.

I pass my story on, not to hurt, or the be judged.
But in the hope it can heal some cuts.

I awoke this morning at eleven feeling fresh and healthy and I had a really good sleep, I did not get to sleep at all at the hospital as I was woken up every hour or so by background noise, people coughing, getting up to use the toilet, the nurses talking and giggling, plus the lights are on ^^, funny thing is they admitted me to rest and I got hardly any sleep at all.

Karen came and helped me into the house and helped me with my things, she is a really caring kind and compassionate person.

Shell and Karren went shopping.

Amber gave me a lovly drawing.

My Mum phoned me and told us that she is taking all of us to Sandy Balls lol what a name!

Looked after Shell, covered her in blankets made her a drink caressed her.

Made salad with Shell.

Run Shell a Bath

Landlord came over, said he thought the complaint was all bullshit anyway as we have lived here for two years and been model tenants as far as he is conceared nice to hear.

Put Aloe on my wounds.

Sat and watched Heroes with Shell on Netflix.

Made love to Shell, stroked her hair till she slept then blogged, went to bed.

Perfect Day.

Sorry for the summary and lack of content!


Day Thirtyone:

Song of the moment

Emeli Sandé – Lifetime

Been up most of the night my brain has buzzed with ideas.

The Venus Project does not have any information what so ever on the Apple store, as a developer it is something I noticed after doing a few searches, I have put out a proposal to create iBooks, Podcasts and possibly an App.

Looks good so far a few people have shown  an interest, so now we are awaiting a team co-ordinator to organise us into teams, unless off course they don’t have anyone at all for iOS stuff then I would volunteer to run the project.

Shell and I have had a really great morning so far we spent many hours last night making love and just holding each other, I really feel we will get through all of this, we have been together for 17 years, some of that time has been a very dark place for us, we have done just about everything you should not to do to your partner to each other yet we are still together, in the words of Shell’s father, may he R.I.P, God bless you Mick. Love conquers all.

I am still awaiting the results of my application to the NLP academy I really do hope I am accepted as I really want to change my life for the better and know that studying NLP properly with others will make a huge different to my healing process, communication with others and my emotions.

Looking forward to going out this evening with Mum, Dad, Sister, Nan and some more of the family for an early Mothers day meal yum!

I am really looking forward to Seeing lil Ella this weekend  She’s so fluffy!

We went out to-night for a mothers day dinner everything was lovely until we got home and Shell started lying about cigarettes again, flash back! here we go again, all the time she lies to my face and I believe her we have huge problems, I do not think she will ever stop lying, how do I trust her if she can’t stop it even for the stupidest of things.

She has been lying to me for years, why am I falling for her crap again.

Shell and I are on the rocks, I need to move out it seems, everything has gone wrong.

That is it for today for now, Chou.

Copy of my proposal if anyone is interested in contributing please click the link below.

Venus Expressions Media(TVP Support Team)

Increasing Global Awareness of The Venus Project by way of the Apple App Store and iTunes

Goal to enter the Apple Worldwide Market place to increase global awareness and attract new members to TVP in a previously untapped market.

Upon searching for the phrase The venus Project the only hit was an album.
It is my opinion that the information that is already available could be simply converted into the iBooks format and made available for free download for iOS devices including iPod, iPhone and iPad, significantly increasing the potential reach.

The distribution of this information would be via Apples online stores and cloud servers.

The cost for a developer license is $99 per year and this allows one to distribute ibooks, music, video, and applications via the Mac and iOS App stores, there is different terms and conditions and rules regarding the types of media that can be published but it is mainly offensive materials that do not cut the grade.

There are three main avenues of distribution for the information using Apple technology.

An iBook is just like a normal book on an iPad or iPhone you can flick the pages with your finger and read in comfort, the iBooks application allows you to remember where you are on one device and continue reading on another in exactly the same place.
3d Models, video and audio can be used, embedded and played but are limited in file size, it is a book remember.

Podcasts are similar to radio broadcasts but can be run by anyone, there is an application process as with everything Apple, but due to the wide variety of content that is available it does not concern me to much that TVP would be refused, all the video and audio media can be turned into podcasts and then made available in the podcasts directory from within iTunes, users can search for podcasts that they find interesting and subscribe, future updates will downloaded to their macs or PCs and synchronized with their iOS devices, as with iBooks things carry on where you left off, so if you watch on one device you can continue watching the same content on another device from the same place, users that Have Apple TV could also stream the videos wirelessly to their TV’s for a more engrossing and family orientated Entertainment, rather than watching it on YouTube on their computers, YouTube is available on Apple TV advert free, this allows users on these platforms to look up more information on their TV’s.

An application can be as simple as converting some custom webpages to an application or as complex as a 3D simulation, both of which are comfortable running on iOS devices.
Advantages of apps are, it is possible via iAd to make some income, take donations or sell merchandise from within the app via in App purchasing and allow in app communications, possibly cross-platform.

Thanks for reading my draft.