Hello from a new member

[Guest guest]

Thank you, first of all for making a stand for what you believe in.

I've been banging my head on the Doctors door for over twenty years

and feel as though I'm swimming against the tide, drowning at times

but rallying again to fight my own cause. I have just turned 49

years and feel life is passing me by and the Doctors are content to

leave me to it as I am NORMAL. I'm going to have " Irene MacIntyre

was anything but Normal " put on my tombstone.

I suffered from horrendous period pains as a teenager and had

problems swallowing amongst other things and was checked for Thyroid

problems and had an esphoguscoptomy when I was in my early 20's. I

was NORMAL then and was left to endure PMS. When my mother was

having difficulties with her thyroid in the late 1980's, I

read " Solved: the Riddle of Illness " by Brora . After the first

couple of chapters, I realised that the book could have been written

for me. I found highlighting pens and went through the book

underlining relevant areas. It was more colourful than a story from

Balamory. I passed the book onto my Doctor who thought it

was " interesting " but because the tests were still normal her hands

were tied. At the time I was also undergoing an examination for

abdominal pains and infertility. I was offered IVF, but did not go

down that route as I felt I needed to have my health problems

resolved first and that I would fall pregnant naturally.

I did eventually have a baby. It all went pear-shaped after that.

Every night I lay awake in agony. I spent more time crawling in my

sons first few years than he did. I couldn't take pain killers as I

was hoping for another child but in 1998 I was hospitalized as the

large vertical muscles in my back went into spasm. After a fortnight

I was released into the care of my Parents, husband and son in tow.

I then had to come to the decision that tramadol and amitriptyline

would give me some quality of life with my family and that I wasn't

in a fit state to have another child. A very painful decision.

I have struggled over the years. Upping the medication means I do

better through the night and am more mobile the next day but it

leaves me with the " lights are on, nobodies home " feeling, which on

top of the fibro fog makes things hard work. Checking in with the

doctor every so often in the hope that I could get help, I've had my

thyroid regularly monitored along with my liver function. (I seem to

have an intolerance to Amitriptyline but sorted this on my own with

an Australian Herbal Detox system. The Gasto man was not pleased,

surprised? I pushed the idea of hypothyroidism again a few years ago

and the Doctor did a test for autoimmune disease. This was positive,

or whatever, so she's happy to monitor my thyroid every 3 months. As

I said to my Doctor, sort my problem and I won't need to take all the

pain killers. This month's result is TSH of 4.94. I was 5.9

towards the end of last year, 2.5 at the beginning of the year.

I`ve been more concerned of late with having flutterings or tingling

in the throat, through the night mainly. This comes along with a

terrible feeling of anxiety. I have not been referred to an

endocrinologist as the endo man in our local hospital refuses to see

anyone who hasn't attained the magic 10. Life can be very

complicated. In amongst the liver checks the Gastro man sent me for

a colonoscopy and an upper Gi endoscopy as I appear to be anaemic. I

was given the all clear but the examination has upset the muscle at

the top of my stomach. I've had several episode where this muscle

goes into spasm and unfortunately this anxiety thing through the

night is enough to trigger the spasm. I never had any problem here

before. As if the FMS wasn't enough torture to endure.

So sorry to drone on. I have 101 instances like these, many of which

you will have come across from others. I need help to find the right

people before the NHS makes me a bigger mess than I am already. How

can it be acceptable to keep feeding me painkillers that are

poisoning my liver and to probe every orifice (2 laparoscopies, 2

endoscopies 2 upper GI endoscopies and a partridge in a pear tree)

leaving me just that little bit worst each time. What kind of system

is prepared to pay hundreds of pounds on tests and exploratories and

not actually do a thing to treat the source of the problem. I'm a

desparate woman. I still have the young woman full of life and

vitality inside this body of a 93 year old, struggling to break free

from the chains. Knowing that there are many others out there

suffering the same just fills me with sadness and anger.

Several members of my family are hypothyroid. None of them keeps

very well. I wrote to my MP last year to ask him to sign the Early

Day Motion. I've chased him up for a response and won't let it lie.

In the meantime, is there a list of sympathetic endocrinologists or

someone that I can see to make sure I'm not barking up the wrong

tree, or just barking. I read that one of the things FMS sufferers

have in common is a contempt for the medical profession. 25 years

without help, pain is a powerful conditioner. I'll close now before

I overstay my welcome.

Bless you all, I mean that with all my heart. Love Irene MacIntyre

PS I do hope you can decipher my ramblings.