Re: Fibromyalia syndrome vs myofascial pain syndrome // Bonnie..had to print this!!

[Guest guest]

You dont have to do that anymore. no matter what we aren't going away AND

we know what your day looks like, so you can't hide the truth from us. we know

it like the back of YOUR hand.

Hugs

Bonnie

Fibromyalia syndrome vs myofascial

pain syndrome // Bonnie

Suicide is the leading cause of death among patients with FM and other chronic

pain disorders. I can find the links later for those that want them. I'm flaring

today and haven't the energy to search through my 300 plus bookmarks!! I kinda

have them sorted into folders, but brain fog makes me forget which folder I

might have put certain links into, this can happen the next day, and the links

to this topic I found months ago.I do so agree with you about doctors

misdiagnosing our symptoms. I have finally learned to advocate for myself, but

it only happened after many years of what I might call near-abuse by a few

so-called specialists. It is also easier to research things on our own now that

we have the internet. I began my 'journey' back in 1972, and it was very hard to

research thouroughly, even using the library. One had to have at least an idea

of where to begin, now we can simply type in a word or two in a search engine

and come up with enough info to

keep us busy for years. Of course, we do have to learn which is good info, and

which is untrustworthy, but now we have easy access to such places as the Mayo

Clinic or the NHO, which we didn't not that long ago.Luckily for me, my doctor

never just jumps to a conclusion about any new symptom I present with. He sends

me for tests or to a specialist, and he doesn't mind if I have already done

research on it. That is rare, as I have noticed many doctors who just get

totally irate if a patient tries to tell them something. They want us to worship

them as all-knowing gods, and we aren't fit to speak in their presence!! If a

patient disagrees with them, they will often tell them to find another doctor,

as he/she doesn't want to treat them any longer. My old doctor didn't exactly do

that, he simply closed his ears and mind to whatever I said, then " kept on

keeping on " with what HE felt was correct. He made me feel like a nonentity. Of

course, I didn't do

everything he told me to do either, or I would have been living on a diet of

antibiotics!! I obviously didn't join a health club either, and work out for an

hour a day on the treadmill and stair climber. Or join the aerobics classes at

the Y. All things which he swore would 'cure' me.My prayer, as always, is that

everyone here can find a doctor like mine. I had a couple of really great ones

in Washington as well, so I KNOW they're out there. It took a lot of work to

find mine, but it was the best thing I ever did. I'm also blessed with an

incredible mental health organisation. They are all always there for me.Peace

and LoveCaroline> I think the cure is FEEDBACK to every Dr that got it wrong,

They need a> letter saying that their failure to do a complete history has led

to the> delay of me receiving the " correct' diagnosis and treatment. Without>

feedback a Dr cannot change the way they do their evaluations. I have> been

having drop attacks for over a

year I did surgery for " seizures " and> my onc just happened to mention that

Neurally mediated hypotension is the> real cause of the " drop attacks " I have

had my head cut open AND lost a> lot of memories from the side effects for

absolutely NO reason. This year> I am doing conservative management only and the

Quacks can go to hell. I> need to develope a life that includes this train wreck

of a body but isnt> run by it. No Dr is gonna give me a magic pill that will

take all this> away, so I ve just gotta get a tougher skin and deal with it,

even if I> hate every minute of it. No job, no school, no social life, in too

much> pain to do much, I need to> totally redefine what a normal day looks

like.> > What's the suicide rate for fibro patients, from the sound of this

list,> I reckon it has to be high, just based on the level of utter distress

and> the knowledge that you will never get any better.> >

Bonnie__________________________________________________________ONE-CLICK

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