DOCTORS AND FIBRO
A newsletter reader
wrote, "Having a webpage for shell shocked FMS patients to
read after being destroyed by their doctor's
visit is a great idea." Below are comments I have received
from FMS/CFIDS patients regarding their doctors. Hope they will help
you feel less alone and more validated if you have gone through a bad
experience. - Dominie
"Several years ago when I tried to get a
diagnosis from my GP and he told me I wanted to be sick since none of
the tests came back with any answers and then I learned about
fibro from an aid at school. I went back to the doctor and told him I was
so angry I could kick his head off of his shoulders and down the hall like a
football. He was stunned at my comment but I did not care! It was at
that point I decided to take up for myself with the medical community. If
you dish it be prepared to take it! The HIPPA laws were put into
place for idiots just like him. You might want to call that to his
attention and let him know you pray he never is faced with an invisible
illness."
"I went in to a doctor in town to get
my candidiasis diagnosed...big mistake!!! She listened to me for
5 minutes and then without doing any testing told me that she
thinks I need to up my prozac and see a
psychologist!!!!"
"I think with FMS and doctors you just have
to stick to your guns when it comes to getting the right treatment for
yourself. You have to be your own advocate."
"Amazing how one's life can change so
drastically in one afternoon. I'm so low right now that I'd have to stand
up to scratch a snake's belly. Remember the great doc I raved about being
so lucky to have found and how he listens to me and works with me on
things? Well, he turned into Dr Jeykll, or is it Mr Hyde? He came in
and asked me how I've been and how much exercise I've been getting. I
answered him and he got right in my face and started yelling at me. I was
so stunned, it took a few seconds to fathom what he was saying. He
said that I have to take some responsibility for my illness and stop using it as
an excuse for not doing anything. He said that he will no longer
be my "enabler" by giving narcotic Rx's to a drug addict who has been kicked out
of 3 pain clinics. I felt the blood draining out of my face and thought I
was going to keel over. I asked him what was wrong with him today?
That [set] him off and he said don't try to make it his problem. I told
him to look at my record and he would see that I have been to one pain
management doc last year and after 2 visits, it was clear that she and I did not
agree on anything, she was rude and had the personality and compassion of a
turnip. She gave me an Rx for Vicodin, which I STILL HAVE NOT FILLED AND
THIS WAS IN 2003. Don't think that's very good drug addict behavior.
It occurred to me that my husband had his appt last week and then I knew what
happened. I said I knew that he had spoken to the doctor about me because
the only other time the doc and I had a problem, that is what had
happened. He wouldn't say yes or no but I knew. I told him that I
had found many friends on the computer...all saying EXACTLY what I'm
experiencing and that I feel so validated by that. He asked me why I
needed that? There is no dispute that I have FMS, I just need to get off
my a** and do something. I told him it was important because if you don't
have it, you don't understand it and I live with THAT every day at home. I
had taken some flyers and thyroid information to share with him and see if he
would order the blood work or refer me. He didn't look at
them. I kept expecting to wake up any minute, but I
didn't. He said alot more but I can't remember it right
now. I'm sure that everyone on that hall heard it. While he was
writing my Rx's, I said, "I am SO disappointed in you". He seemed to
soften up a little but I just wanted to get out of there. When I got home,
I lit into my husband. I am sick of being called a liability every day,
sick of the verbal and emotional abuse and in this atmosphere, I will NEVER
improve. He finally admitted to speaking to the doc. I told him that
he had finally gone too far and I am not going to take his abusive treatment
anymore. I told him that since I am a "liability", I am going to let him
free himself of that burden and he can get a divorce. Of course his MAIN
concern is that he will have to share some of HIS money with me so he wanted to
make nice. I'm done. It's over. I will just have to find a way
to get by on my own. BTW, my husband tells anyone who will listen that his
wife takes too many pills. What would you make of that? He doesn't
mention that they are for BP, acid reflux, cholesterol, bone loss prevention,
muscle spasm, depression and ONE for pain. That is the only thing I can
think of that he could have said to the doc to make him say all those
things. I am still in shock, and SO angry."
[FROM DOMINIE]: "My
doctor for the past 12 years has been very helpful in
discussing various meds with me and letting me try different ones that
were recommended to me by people with FMS. Unfortunately, very few of the
drugs helped and many had horrific side effects--but at least I got to try
different approaches and was never scorned. I appreciate that my doctor
has trusted me to know what was best for my body. Regarding prescriptions,
I only take a mild anti-anxiety sleep med now. I have to see my doctor
every 6 months to have the prescription renewed and my pharmacy has to call
the doctor every month for the refill. There are so many hurtful doctors
out there who don't have a clue about FMS/CFIDS and who devastate their patients
emotionally. I have been to those kind too in the
past......UGH!!!!!! Needless to say, I appreciate my doctor's
helpful, courteous, willing-to-learn attitude. He is a rarity!! I have had
to educate--or attempt to educate--nearly all of my doctors about FMS/CFIDS. I
am so glad for the internet with all the knowledge that is right at our
fingertips now! You can copy articles and take them to your doctor to
read."
"I wish I could be with someone right
now. I am feeling so crushed. I just came back
from the doctor. I don't even know what to type at this
point. I am just hysterical and can't stop crying.
I just can't take this anymore. My doctor doesn't agree
with the Wilson's Thyroid thing, although he's testing me again through
traditional bloodtesting. I told him that I wanted him to entertain the
idea that I'm misdiagnosed and that maybe it IS something curable, because if it
was this Wilson's thing then maybe I 'd have a chance at a normal life.
He said that he would send me to an endocrinologist but
that most endocrinologists don't buy into the Wilson's theory and that TSH was
the best test. Because I had to fast before I went
there, I didn't think that I could take any medicine this morning. My head
was pounding. I guess it was at his office that he and I realized how much
headache medicine I've been taking on a daily basis. Now I'm on another medicine for the prevention of headaches
that I am supposed to take daily. My weight is now
at 150.......150!!!!!! Never in my entire life........I just can't
........I am enraged and crushed...and beyond furious....I can't even
catch my breath. I don't even recognize myself anymore. I am
just some ridiculous symptom list everyday!!! My husband is out of town, my sister is overseas and my kids are at
school and I can't even go outside to walk because it is pouring rain
and my face is so swollen from crying. I know that we all have problems and I know that I am no different,
but, honestly, right all I can see is this life of mine and how upside down it
is with no hope of it changing or being cured and I just can't accept
it." [NOTE FROM DOMINIE: This patient finally found
a doctor that would help her more.]
"Wow how far I have
come...discussing the autonomic nervous system with fibros even a few short
months ago I had a phone conversation with a medical Professor before I knew I
had fibro, and I said, I have been doing research and have something wrong with
my autonomic nervous system; i.e. my parasympathetic cant turn off the
sympathetic for me to sleep at night, plus I had the proof of HVS breathing
pattern disorder (at that time). To which the Professor replied
that I was talking absolute rubbish and where did I get all that nonsense
from
. I told him he was an arse, hung up, hyperventilated madly and
banged my head on the table while crying in complete
desperation. I had rung to get a lab test to read cortisol
and came away empty handed and really
down."
Need to vent
or read more on this subject? See the
BAD DOCTORS FORUM
DOMINIE'S FIBROMYALGIA & CHRONIC
FATIGUE SYNDROME HOMEPAGE
DISCLAIMER: I am not a medical doctor. I
am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website
is not to diagnose or cure any disease or malady, but is presented as food for
thought. This information cannot take the place of professional medical
advice. Any attempt to diagnose and treat an illness should come under the
direction of a physician. No guarantees are made regarding any of the
information in this website.