"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."
"My first doctor saw me laughing at Costco one weekend and told me that she was convinced that I had spent the last 3 years lying to her about having Fibromyalgia. What she didn't understand was that having a chronic illness doesn't mean you don't get to be happy. In fact, it makes the happy moments that much sweeter."
"My rheumatologist was excellent at diagnosis. This doc determined that I have both Fibromyalgia and Osteo-Arthritis, took X-rays, ran blood work, and did the pressure point test. The doc asked a lot of questions, but didn't really let me ask questions....didn't listen very well and didn't answer questions as fully as I would like. (I apparently ask too many questions.) The doc was very good about giving handouts with good information about Fibromyalgia and was knowledgeable about the condition. However....this doctor is VERY drug-oriented. Massively, intensely, overtly drug-oriented. I had an allergic reaction to the first drug, and refused to take it any more after just one dose. The second drug caused me to go into a catatonic state. I could not think. I could not plan anything longer than 2 minutes in advance. I could not function. Sometimes I could not articulate coherent sentences. I told the doctor I quit taking the drug because it was making me catatonic, and it frightened me. We got into an argument about how I have unusual reactions to most drugs, how I don't like taking drugs unless they actually help and don't hurt me, how I didn't want to take 20 mg of Prednisone for 6 months because I was worried it would give me diabetes and cause other more serious problems, how the diclofenac only works if I take it rarely (doc wanted me to take it twice a day every day all the time - even though it's an NSAID and will damage the kidneys, and even though my family has a history of kidney cancer, and even though it gives me tinnitis if I take it more than 2 days in a row!, and even though it's effectiveness diminishes the longer I take it). At the end of the argument the doctor stated they could not see me any more if I refused to take the drugs prescribed, and couldn't help me anymore. This doctor and I have a difference of opinion about the use of drugs in treating disease. The doctor is adamantly opposed to any natural methods. I wish I could find a doctor who might be more friendly to natural methods and who won't go ballistic on me when I tell them that I simply CAN NOT take certain drugs because I have intolerable reactions to them. At the moment, I'm just doing my own research online, taking vitamins supplements, and occasionally talking to my family doctor about it."
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