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What can we do for FMS Awareness Day?
11 Replies
January - April 22

Hi everyone - I was wondering if we could share ideas about what we all might do to raise awareness?

What do you wish the medical profession knew?

What do you wish your family and friends knew?

And how can we get the information out there in a better way?

 

Fantod - April 22

This is from an earlier post:
For those of you who are interested and want to raise awareness of this syndrome, you can purchase purple wristbands from the Fibromyalgia Network online.

The wristbands are available in two different size packs. Three wristbands for $5 or 6 wristbands for $9. Shipping is free in the USA. The wristbands are debossed with "Fibromyalgia - It's REAL."

This is a simple tool that may prompt people to ask about Fibromyalgia. The more people we can educate about this syndrome the easier our lives will become. Imagine a world where people don't think that we are all a bunch of neurotic lazy hypochondriacs!

 

Fantod - April 22

I wish people understood that you are never to "young" to be chronically ill. And, that the type of car I drive does not dictate my need for a permanent handicap sticker. Amen.

 

Cher0208 - April 22

I would love to purchase the bracelets. I too, would really like a world where people don't think that we are all a bunch of neurotic lazy hypochondriacs! Sometimes, I wish I could give people (like every doctor I have ever seen)Fibromyalgia for one week only and then say "So what were you saying? Would you still like to send me to a psychiatrist and put me on an antidepressant?" I had one doctor test me (and I didn't know I was being tested for this) for cocaine and a bunch of other drugs which of course came back negative. But I guess she thought I was some drug addict and that was causing my symptoms. But anyway...moving on-

I wish medical professionals knew some better ways to treat the symptoms. Maybe advise us on eating instead of jumping to toxic medications. And I wish they knew what this feels like.

I wish my family and friends believed in what I am dealing with. A lot of them don't want to hear about it and don't ask.

I think a better way to get it out there is to continue to speak out and maybe one day even talk about it on t.v.

Have a great weekend and holiday everyone!

 

Pikespeak - April 23

Hi Jsnuary! I was thinking the same thing! Perhaps everyone on this site can blitz one TV show (Katie Couric? Today Show? Dr. Oz? Diane Sawyer?) Someone who will be sympathetic to FMS. How about NPR too! I am open to suggestions!

 

mdak - April 23

hey I think the New Dr. Drew show on CNN would be great. I feel like geting on his facebook site or write him. Maybe one of you guys would like to write him. I think we would have a chance to spread the news on FM through him. Maybe I am just feeling lucky today. lol

 

Fantod - April 23

I agree - agree on a media person and blitz them. But, not Dr. Oz. He has, in my opinion, some personal bias about FMS and would not be a good choice. He has made some uninformed comments about treating chronic pain which make me less than ethusiastic about using him.

Since this is a largely female syndrome, why not Katie Couric or Diane Sawyer?

 

January - April 23

Cher - LOL about the drug test. I went to the ER because I was seriously ill after surgery. They ran a complete drug check on me for illegal drugs, narcotics, everything (and it came up totally clean). And, of course, I was billed for this unnecessary BS. I only found out about it when I got my medical records! At the time, I was taking antidepressants, so the doctors completely dismissed my complaints - and didn't read my lab tests either - they said I had anxiety and sent me home. I passed out for three days - I think that's a coma - or something similar!

 

January - April 23

About the idea to blitz a news person. GREAT IDEA! And also, I agree with Fantod - Dr. Oz is a pretty "mainstream" guy, parroting the usual middle of the road line. Who is a newsperson who has shown interest in unusual medical problems? Who is very intelligent and open to new things? Oprah? (We'd have to move fast on that one!) Lisa Ling?

I think one thing to remember is that newspeople exist in a really political environment, and they have to "play the game" and go along with the general concensus of what the AMA, Big Pharma, etc. dictate or risk their jobs. Treatment of chronic pain is controversial, and as we all know, a lot of doctors "don't believe" it exists -- and a lot of them think fibro is "all in your head." So who is the best person to offer a really fair look at the truth and listen to the fibro community OVER the doctors? Someone who has had suffering in their own life might be most compassionate...

Couric might be a good idea, as she went through her husband's battle with cancer. The morning news shows - at least on network - are pretty much sound bytes of air puff. Nothing substantial.

I have always remembered a show I saw years ago on Lyme Disease -- don't remember the talk show host -- but never forgot ALL the people who were there suffering with Lyme and telling their stories about it. If I recall correctly (?) the panel on stage consisted of a couple doctors "for" and "against" Lyme Disease. (And I seem to remember it was the more mainstream doctor who was "against" it.) Ha….now that we know Lyme really exists, and they have found organisms that correlate with it!

 

Fantod - April 23

I sent an email to the Today show and Katie Couric. Oprah is on her way to do other things so I think she is out. If we could get a news outlet to just make a brief mention, that would be awesome.

The squeaky wheel gets the grease - appeal to your local news outlets as well as the national ones.

 

Pikespeak - April 24

Hi everyone. Just found that there's a meetup of FMS folks in my city! You can look to see if there's someone nearby at meetup.com. I have now started a local discussion about doing something locally May 12...

It seems that there are several different entities/forums online. Why not band together for an awareness walk in 2012? Perhaps there can be a concerted effort to get a census on how many FMS/CFS documented cases in the US. I saw the number "10 million." We need some hard facts on this.

 

January - April 24

PIkespeak - kudos to you! That is great what you've got going! But I had to laugh (just a little) about the awareness walk - since there's no way I could do much of a walk! Up and down my little street does it for me! Maybe others would do a walk for those of us who can't walk long distances! And maybe THAT should be a BIG "awareness-raising point" - that a lot of us with CAN'T do a long walk!

I don't know how many other fibro/CFS people feel the same way. How many of us are "seriously" disabled by these diseases, but carry on so well that people don't get it. I've had fibro at least 20 years - it has gotten worse with time and age - and I have bad back issues too. But I do a great job of "carrying on!" Looking normal when I do go out. Most people don't know that I have major pain if I walk for 10 or 15 minutes. The only way I manage normal activities (of several hours) is with pain medicine - thanks to that I CAN go grocery shopping, etc. But it tires me out! Long gone are the days of an afternoon at the mall.

I had to stop working because I couldn't sit at my desk, even part time. As I sit in my chair and work on my laptop, I feel like I'm wearing a "pain girdle" that goes from my waist to my knees. When it gets unbearable, I have to quit.

Do other FMS people have these issues? I don't know if it's mostly my back problems - or if this is a general fibro issue. (Maybe another thread would be better to talk about this.)

 

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