Fibromyalgia Community

Wow... That is wild... This in my opinion would blow us right back in reverse... Right back to not being listened to... Not getting the proper care we deserve...


"fibromyalgia isn't a disease — it's just a spectrum of human experience"... A "spectrum disorder".


Right out of the article...


My concern is where does this put us... Where do we go from here... I know a petition site but where do we petition to... I think we can write our own petitions there anyway...


This angers me... I am ill not living a defective life...


Sorry... I will stop ranting...
Take care... Love... Jan/Dakota

Hey, 200 years ago we were hysterical females. M.D.s know what they were taught in medical school. For most of them--even rheumys--that did NOT include fibromyalgia.

There are decent, caring, respected professionals out there who are finding the changes in our brains, our muscle fibers, and our lives. There will always be naysayers. We just have to buy the book, read the scientific journals (not some crackpot's opinion), support research, and maintain this forum and other ways to keep the reality of FM the norm.

(One day I told my family practicioner that he sometimes came accross as not caring about my symptoms. He took a deep, mournful breath and said, "I just feel so helpless. I know you need help. That's what I became a primary care physician for! It's just that chronic conditions are so hard to treat. This is especially so for fibromyalgia. We know so little about it. No one likes failing a patient. Sometimes I tend to blank you out, not because I don't want to help, but because I don't know how to help. Then I turn my efforts to theose patients I can help. It makes me so mad--at myself."

After that, I started telling him about fibro research. He always treats me like an equal and appreciates my input. I know I am very lucky and that most of you do not have this kind of relationship with your docs. But remember, I made the first move. I was honest. That made it possible for him to be honest.

I'm also lucky that my college studies were in chem and bio.
Now, I read medical journals on FM religiously. The Fibromyalgia Network is a big help there. Then I can bring info to my doctor. After all, if a family practicioner read all the journals on all the conditions he treated, he wouldn't have any time to treat patients.

Sometimes, I sound like I know it all. I don't. I I know that. But I do know something about the science of fibromyalgia. I try to help others with this knowledge. Others here are so loving and comforting their posts bring a smile to all of us--even on bad days. Some of us are young or new to this disease. They need our help. They also bring a fresh viewpoint to those of us who have had fibro for entirely too long. This website is all about our ability to help each other. And we all do. That's why I usually sign off with

Towards better days,

BetteK

Yeah= we don't get better and we don't die.
Drs and insurance companies don't like that, LOL