Fibromyalgia

[Philip]

Finally, good news for persons with fibromyalgia syndrome (FMS). New surveys reveal that public

perceptions of FMS are in many ways much more positive than those afflicted with the disorder

commonly believe. At the same time, however, better education of the public and persons with FMS will help

to assure that early and proper care for this disorder can be received by those affected.

FMS is a condition characterized by chronic, widespread pain and tenderness, decreased physical function,

fatigue, and difficulty sleeping. It affects up to 12 million Americans, but an estimated 70% are misdiagnosed

or undiagnosed. It mostly afflicts women, but can impact men as well.

In a unique study comparing the attitudes of FMS sufferers with those of the general public, the American

Chronic Pain Association (ACPA) in partnership with Forest Laboratories Inc. recently reported results from

two new national surveys, called “Two Takes on Fibro: Public Perceptions and Private Realities.” Conducted by

StrategyOne and the Harris Interactive Service Bureau, 1,215 men and women with FMS and 1,002 adults

from the general population were interviewed during October 2011.

For starters, the surveys show that people with FMS falsely believe that the public views them negatively. For

example, among the general public, 41% view FMS sufferers as “courageous,” while only 17% of adults who

have the condition believe society actually perceives them that way. Similarly, a quarter of the general

population view persons with FMS as “strong,” although only 15% of persons with FMS think the public feels

that way about them.

There also were other sharp discrepancies. Whereas a majority of persons with FMS think the public views

them as complainers, weak, or lazy, survey respondents from the general public rated those traits as being

quite low in persons with FMS. So, overall, the good news is that the public has much more positive views of

them than FMS sufferers typically believe.

At the same time, although 92% of the general population has heard of fibromyalgia, and 1-in-3 persons

know someone who has been diagnosed with FMS, relatively few understand the full impact of the condition

on daily life. For example, the public thinks it is more difficult for persons with FMS to take a 20-minute walk

than is actually the case, but they underestimate the problems FMS sufferers have with common activities like

driving a car or sitting through a movie. Other ways in which FMS impacts everyday activities include:

• 71% people experiencing FMS symptoms said they have difficulty vacuuming, doing yard work, or

cleaning their apartment or house.

• More than half (58%) had difficulty lifting and carrying a bagful of groceries or taking out the trash.

• Romantic intimacy suffers as a result of FMS, especially among men…

o 56% of men and 48% of women with FMS said it has become difficult to be physically intimate

with their partner.

o 25% of men and 15% of women reported that when experiencing FMS symptoms they could no

longer sleep in the same bed as their partner.

• Fibromyalgia also may contribute to decreased income, missed work, increased sick time, and missed

career opportunities…

o 70% of FMS sufferers said that they had difficulty completing tasks at work, and 61% admitted

their work life or career became more difficult because of their fibromyalgia symptoms.

o 60% responded that they had to take more sick/personal days, and 56% reported their

personal income had decreased because of their fibromyalgia symptoms.

The survey also found that, while early diagnosis of FMS is critical, and two-thirds of people with the disorder

say it disrupts their normal routines, many persons with symptoms do not seek help soon enough. Among

survey respondents with FMS, more than three-quarters (77%) waited up to 3 years before seeking help from

a healthcare professional. Remarkably, 70% of persons with FMS reported they hesitated to visit a healthcare

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Interesting post x

[TeaInAPot]

Thank you for sharing this.

[spider555]

I think it's difficult when there's not a proper diagnosis of fibro. We need more research.

[Philip in reply to spider555]

Over the years the experts have tried to test us for fibromyalgia and the one used takes cantake about 3 to 6 months if done correctly by the medic, the Rheumatologist is the best person to diagnose fibromyalgia and to give medication, so it would be better to ask to see a Rheumatologist if it’s possible. Personally I use sleep to keep it under control, I have have found that over the years I found sleep the best, natural sleep isn’t possible with fibromyalgia so I’m on amatryptloline which is a recommended drug and used to raise pain threshold and relax your muscles when in bed.

[spider555 in reply to Philip]

I had to stop amitryptiline because of hallucinations.

[Philip in reply to spider555]

Doesn’t work for us all unfortunately, maybe chat with your Dr and see what recommends.

[spider555 in reply to Philip]

It seems to work really well or it gives problems.

My doctor is calling me tomorrow. Fingers crossed...

[Philip in reply to Philip]

If you don’t mind me asking, how many legs do you have lol, it’s not 8 is it lol.

Only kidding lol

[spider555 in reply to Philip]

Ha yes only the 8 😄

I like to scuttle around.

[Philip in reply to spider555]

Most Rheumatologist will use the 18 point pain test and can take around 3/6 months, sometimes it can get mixed up with ME, and the difference is pain more so there is a lot more pain with Fibro..

[spider555 in reply to Philip]

I've never had the 18 just about 6 I think.

[Philip in reply to Philip]

If I remember it’s around about 11 points and must be in all quarters of your body, not just a leg or an arm but all quarters.

AND DONT CHANGE ANYTHING UNTIL YOU HAVE SPOKEN TO YOU DOCTOR.

[Philip in reply to spider555]

What medics are doing for along time now is studying pain in every way they can and fibromyalgia is amongst it, only the aches and pains, there has been a huge amount of research, flowing through the medical world, America is doing as much research as they can, some say it could be lymes disease similar to fibromyalgia, there are Drs in America and Australia claiming to find out what is what at a very huge costs that you need to pay up front, blood tests they say have to be sent to Australia lol.

[spider555 in reply to Philip]

There's a Germany lab for Lyme tests.

[Philip]

A few years ago there was given a questionnaire to thousands of sufferers, it was followed up by JOhn Torres Uni in Liverpool, and one thing I remember was being told the reAson why people with fibromyalgia look so well is that fibro produces its.own type of Botox lol.

[SusieJo1948]

@Phillip that was very interesting I have fibro. It's just awful.. Do people with fibro have other things wrong with them. Are you American,I am American.I enjoy talking to others from different places.

[Philip in reply to SusieJo1948]

Hi Susie, thank you for replying to the post, Fibro is Evil and as like every other sufferer I wish I didn’t have lol.

Yes some people do have other symptoms, myself I have fibromyalgia, ME, Diabetes, cold, and a few more including Vascular Dementia, Fibro can be secondary illness but with Fibro can and does come from some sort of traumatic experience, operation may cause it and even mental trauma. I’m not a doctor or any type of medic, I had this for around 30 years, so the reason I know.

When I was diagnosed with my many illnesses I did my best to find out about each one, that way I can learn about it and attempt to cope with it but most of all I accept it as part of my life and learn to live with it.

Any illnesses are horrid and hard to cope with.

I’m from England, a beautiful Big island,

I live alone now because my Dementia was causing too much confusion and rows and i have much less stress, gets lonely BUT I have total control of the remote controls, yeahhhh lol.

[Philip]

You sound scary and all them legs, lol Aahhhh ol.

[Manditts]

Until people walk in our shoes ,they have no idea,loved the post.

[Philip]

Absolutely, my mum said to me one day, “what is it like to feel pain and because she had never felt pain, so maybe those who look down on us because we are not perfect like them because they don’t know or even care.

Lol

Philip