My visit to my rheumy

[Guest guest]

I am very upset and frustrated. Have you ever felt like you are just totally

ignored no matter how much you try to talk with someone?

I went in this morning and his nurse asked how I was. I said I do not feel

good and she said I look exhausted. I told her my symptoms, that they have

been constant since April and that I have been having these off and on since

summer 1999. Of course, this stuff was in my initial complaints to my GP,

who told me it was a " virus " , then " lupus " and then he sent me to my rheumy.

I showed the nurse all the papers I brought in, made it clear I did not want

him to think I was being disrespectful---she said he would not think that,

that he is open to suggestions and such from patients.

Well, after he did his usual exam, he asked how things were from a few weeks

ago. I started telling him about the symptoms and such, tried to show him

what I found on the internet---he refused to look at any of it. He told me

that CFS is not a disease---it is a complex set of symptoms and that when a

physician cannot find an absolute cause, this is basically the catch all

diagnosis. I mentioned FM (which I pronounced wrong and he, in a sarcastic

tone, made a point of correcting me on it) and he said basically the same

thing---symptoms with unknown cause so diagnosis of FM is given and that it

also is " just symptoms " . I asked him what is wrong with me then---he said it

is my cryoglobulinemia. Just a few weeks ago, he told me flat out that

fatigue, brain fog, loss of short term memory and headaches are NOT from

cryo. When I reminded him of this, he got very perturbed.

I told him that I have gone on inactive status at work and that I am due to

start back to school in 10 weeks---what can I do? He said he did not know and

then prescribed me Clinoril and Zanflex (I think that is the name). He wants

to see me in 6 weeks and wants me to go through another round of $700 worth

of bloodwork, which I cannot afford (our insurance pays 70% of it but with

me not working, it is too much of a financial strain).

Needless to say, I am a little more than upset. I did not know whether to

scream or cry. I called my husband at work and he wants me to call our

insurance carrier and ask for a referral---this rheumy is the only one in our

area. My husband said if needed, we'd go to Cleveland (65 miles away). Thank

God I have a supportive husband!

Have any of you ever been told or heard that CFS and FM are not diseases?

That is why I was surpised when someone said the Arthritis Foundation

recognizes FM.