Amy long response Re: i am new to this group

[Guest guest]

Hi Amy,

Welcome here. I have had a very similar experience trying to get a

diagnosis, but only for 3 years. I did a ton of research between

doctor visits and I am convinced I have CFS and FM both, but the

rheumatologist says no, and my PCP says " probably " . That's as close

as I've come. I have another appt with my PCP next week and I have a

list of stuff to go over with her.

The rheumatologist I went to was awful. First of all, I chose her

out of an internet search for female rheumatologists within 25 miles

of my home. I didn't ask my PCP to refer me to someone, I chose the

someone and asked for the referral. I walked in to her office with

an envelope bursting with notes and she rolled her eyes, took one

look at me, and said " You do not have fibromyalgia or CFS. " When she

pressed on the tender points for FM, she barely even touched me, even

though everything I've read says they are supposed to apply 9 pounds

of pressure at each point. Her write-up, which I got a copy of,

states that there is nothing wrong with me that a good night's sleep

wouldn't cure. I went to her again to be evaluated for lupus. She

asked why did I think I have lupus. I told her an employee of mine

has it, and to help myself understand my employee's situation, I

looked it up on the internet, and when I saw the symptoms I said " My

god, this is probably what I have! " At that point, she laughed and

said, " You do not have lupus. " dismissed me, and would not listen to

anything else I had to say. I was devastated.

The first PCP I went to 3 years ago behaved similarly. Again, I

mentioned the word " internet " and she laughed and said, " I wish

people would stop using the internet and then coming here thinking

they know what's wrong with them. " Then, she told me I was depressed.

In my defense, I was doing research because I was determined to know

what is going on with me. In years past, patients didn't have the

kind of resources they have today, and I guess it is driving these

doctors crazy.

Now, a funny story which turned on a light bulb for me. A friend of

mine is an electrician. He was telling me that he was working at a

client's home and the client had done all kinds of research on the

internet about electrical work. The client proceeded to tell my

friend each step of the way what he was supposed to be doing and

why. My friend finally said to him, " Please, let me do my job. I

know what I'm doing. " Well, this set off bells and whistles in my

head because I wonder if this is the reaction the doctors had to my

self-diagnosing and doing internet research.

I decided at that point that I'm going to take a different

approach: From now on I'm going to act dumb and just say, " These

are my symptoms, you figure it out. " I think I made a big

mistake " admitting " that I looked up this stuff on the internet. The

doctors did not take me seriously. I also am a very happy person,

and I think all the smiling and nervous giggling (I can't help it!)

added to the not taking me seriously.

I hope you and I both get the help and diagnosis we so desperately

need. Welcome to the group!

K2

i am new to this group. i have been strugling for a diagnosis

> for almost 6 years now. my doctor tells me i a have a muscle

disease,

> although all of my test so far have been inconclusive. I have

brought up the

> possibiltity of having CFS several times, since i have almost all

the

> symptoms. she has told me i don't have it without even looking into

it.