My Intro

[Guest guest]

Good Evening,

I just joined the list today but thought I'd introduce myself right away. :-)

My name is . I am a 34 year old nurse in Ohio (married with five

kids---two of my own, three stepkids---four of the kids live with us full

time) and have had symptoms of CFS for almost 3 years now. For about six

months, I was diagnosed with sero-negative lupus. My GP finally sent me to a

rheumatologist who said it definitely was *not* lupus but instead thought it

was cryoglobulinemia (this was later confirmed).

I have had quite a ride since I was diagnosed in 2000. I have had many

symptoms that my rheumy has said are totally unrelated to cryo. The two that

bother me the most are the fatigue and cognitive difficulties.

Off and on, depending on if I am in a " flare " , I get to the point where I

cannot even find the words I want to say, I have a tough time with math (I am

a junior in college majoring in Biology---my symptoms have been flaring since

April and in my math class, I spent about five minutes trying to figure out

the square root of 9!), my short term memory goes and I feel like a

zombie---cannot concentrate at all. The fatigue is so overwhelming that I

will sleep upward of 16 hours a day.

Never having any experience with CFS, I assumed my symptoms were from my

cryoglobulins. My rheumy said no---pretty much chalked all the cognitive

difficulties to the joint pain---said the pain was probably so intense that

it affected my ability to think. I went along with that but after almost 3

years of this (and 2 years after my cryo diagnosis), I think my rheumy is

full of it. I called him two weeks ago, out of desperation---sleeping all the

time, unbearable pain, having problems because of my memory, etc. He did not

take any of my complaints seriously.

Well, I see this doctor first thing tomorrow morning and I am going armed

with as much info on CFS as I can find. I honestly think he does not believe

CFS really exists.

Out of a list of symptoms on a webpage about CFS, I have all of the

following:

Fatigue/exhaustion

headache

malaise

memory loss (short term memory)

muscle pain

joint pain

difficulty concentrating

lack of refreshing sleep

weakness

balance disturbance

blurring of vision

numbness in extremties

flushing rash of cheeks

tender lymph nodes

periodic sore throat without any known cause

Who knows if he will diagnose me with CFS---he has pretty much made it clear

he thinks it is all in my head (tell that to my hubby who has witnessed this

stuff).

Anyway, just looking to network and find support (and give support) to others

with the same symptoms and problems. I do not even know how to begin to deal

with this. I have had to go on inactive duty with my employer because I

cannot stand to do a full shift---the fatigue has become debilitating.

Any advice on how to begin to deal with this? Any advice on how to deal with

my doctor?

Thanks,