Fibro thoughts

[Guest guest]

Anyway, my final thought is this...if we leave it up to the medical types,

I'm not sure they will every figure it out. Someone on this list said

earlier that her doctor had said that swelling is not a symptom of FMS, yet

can it be coincidence that so many of us suffer from this symptom? Maybe we

should organize our own poll of symptoms and backgrounds/diagnosis just to

get an idea of the terrain within this group. What do you think?

Love,

I was interested to read 's account of her life, and also Vimala's,

as I could identify with a lot of what they were saying. I picked up on

what

said about her ability to empathise with other people.

For many years, I have teasingly referred to my many lame ducks, that latch

on to

me with their problems - I don't seek them out, but I assume that being

aware that

I have been 'knocked about' by health and other problems, and yet survived

rather

well and positively, and I have enormous enthusiasm for life and my

interests

and creative work, is the reason they seek my support.

I was a bit taken aback, however, by a telephone conversation I had on

Friday.

Fourteen months ago an acquaintance telephoned me in despair, suffering from

depression , and traumatised by working relationships that had soured. She

phoned

up to three times a day for a long time, demanded my involvement in many

aspects of

her life, and wanted me to agree with her beliefs, etc. I found she drew

out my own

negativity to some extent, as at the time she first rang I had an FM flare

which was

crippling and alarmed me as I could no longer drive more than a short

distance

walk, sit comfortably, work, visit friends and family, which I had so far

managed to do,

albeit with some difficulty for the preceding eleven years, but she seemed

to continue to

need my support, and although I felt drained by my own limitations, I

continued to good

humouredly - I think - be supportive.

During this call on Friday, I received a stream of abuse, suggesting that my

endless

boring complaints about pain was due to my inability to face my own

inadequacies, that

pain was psychological not real, and that my criticisms (very just!!!!!!)

of the inadequacies

of the medical profession in dealing with FM type disorders were obviously

unrealistic,

and that if I had complaints about many of the medics I have seen since my

diagnosis,

it obviously was a reflection on me, as there can't be so many inadequate

doctors.

She then went on to berate me for my unsuccessful first marriage (I have

been very happy

for many years with my second husband), and that the violence I was

subjected to over

a period of years was because I was too wet to stand up to him, and though

he had

beaten hell also out of his first partner, he didn't beat up my successor,

which proved my

deficiencies.

So much for being good natured........, I became accustomed to be put down

from the age

of four, when I first developed the asthma and allergies that preceded the

whiplash

injury that triggered FM.

However, having read a lot about FM since having access to the Web, there is

a constant

uniformity about the symptoms of FM throughout all the available

information, and each

time I have a flare which brings on (new)symptoms which I sometimes doubt

are

fibromyalgia, I find in fact, whatever my complaint , other FM sufferers

complain about it too.

There is a difference between what the experts say about FM and what the

patients say.

I do find that 'experts' tend to focus on a limited range of symptoms and

have diverse

views and beliefs in the management (if any!) of the disorder.

I have been interested for some time in collectively composing a

questionnaire by patients

ONLY for wide distribution, and to see if the findings would not only show a

consistent pattern

of symptoms but might possibly indicate a common factor in the causation of

FM.

I think my main criticism of the medical profession is that it is

unreasonable to inflict

a diagnosis on patients that subject them to derision and ridicule by both

medics and

laymen - as I expect that most sufferers, like myself had never heard of

fibromyalgia,

and were completely baffled as to what the hell was wrong with them.

regards - isabelle