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The UKFibromyalgia Forums • View topic - A concerned outsider



A concerned outsider

Introduce yourself and find fellow sufferers in your area or who share the same interests.

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A concerned outsider

Postby Brimstone » Wed Feb 17, 2010 12:13 am

Hello!

A Spanish friend of mine was diagnosed with Scleroderma and then Fibromyalgia last year, so she now suffers from muscular pain etc. with which you are all so familiar. Her husband also has problems but not as bad. (More about them in another posting perhaps.) I have been researching these conditions, starting with brushing up my cell biology and moving on to the whole subject of autoimmune diseases.

I have to say I was astounded, appalled and ashamed. Astounded by the number of people who spend most of their lives in pain, appalled that the medical researchers have not yet come up with any real solutions despite the wealth of biological information now available, and ashamed that I have been blissfully unaware of the existence and extent of some of these afflictions.

Then I came across this forum. I am full of admiration at the resilience you all have in bearing up to your troubles - often without any real support or sympathy from those around you - and try to make the most of it. The forum has also given me a chance to hear the different ways Fibromyalgia manifests itself in everyday life, a wealth of information that no textbook could supply, to help with my understanding of the processes involved.

I hope that I am welcome here. I know from experience that the more facts one has to hand the greater the chance of making the right connections. Maybe I could even make the occasional contribution to the forum, if that is OK with the moderators.

I am not a medical man but I have a scientific background and a lifelong interest in the awesome and extraordinary power of nature. In my professional life as a computer systems designer, analyst and programmer, I have had to weigh up and sort through complex information, making logical connections to locate problems and find solutions. I’m not blinkered by a formal medical training or hamstrung by the need to safeguard a professional reputation. I keep an open mind on all possibilities however unorthodox. The answers are out there and I am driven to do what I can to help uncover some of them.

Warm wishes to you all.
brimstone

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Re: A concerned outsider

Postby pinksandblues » Wed Feb 17, 2010 8:29 am

Hi there its a welome from me :welcome: wendy :)
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Re: A concerned outsider

Postby HazelB » Wed Feb 17, 2010 9:37 am

:welcome:

look forward to reading your findings in due course, or just enjoying any thoughts you feel you can input to the forum.
xxx
(soft hugs)
Hazel xxx
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Re: A concerned outsider

Postby shazq » Wed Feb 17, 2010 10:05 am

:welcome: to the forum.

I will look forward to reading your posts. :wave:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: A concerned outsider

Postby gillshutt » Wed Feb 17, 2010 12:52 pm

:wave: everyon eis welcome here. The latest research shows that FM is probably a neurological problem, down to a central nervous system disorder rather than an auto immune one.
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Re: A concerned outsider

Postby ladymanvers » Wed Feb 17, 2010 4:08 pm

A very big welcome to you Brimstone; an understanding, non-discriminatory, objective and logical opinion is treasured by we misunderstood, under-represented, sad and suffering Fibromites.

My husband is a highly qualified electronics engineer, a focused and logical Mr Spock type, and he agrees with you wholeheartedly. Upon finally learning a bit more about my condition and applying his diagnostic abilities to the problem he comes to the conclusion that it is most obviously a CNS/neurotransmitter disorder and why the medics can't agree on this is beyond both him and me.

If you're willing to fight for us we'd all be delighted; we fight for acceptance, understanding and raised awareness through our pain,fatigue and fibro-fogged brains so we often come across as tired, neurotic and garbled to the hurried medics who make an immediate judge the cover verdict and think we're depressed....so would they be if they had to suffer the indignity of a chronic, incurable illness coupled with the general belief (even in spite of the WHO's acceptance) that it is a subjective pain disorder.

Ju.xx :wave:
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Re: A concerned outsider

Postby Brimstone » Thu Feb 18, 2010 3:41 am

Thank you all for your welcomes. I have to say after sleeping on my posting I thought I may have sounded a bit pompous, but hey, if you’re going to take on a challenge like finding answers that the entire medical community has not been able to as yet, then being timid about it is not the right approach!

The positive feedback from you is a good start. I’m a great believer in the power of positive feedback to achieve results, just as negative feedback has the power to suck us into an ever-decreasing destructive spiral of depression and failure. Having said that, if anything I post strikes you as hot air then please douse it with a bucket of water ASAP!

Ladymanvers, Mr Spock was one of my boyhood heroes and I think I moulded myself on him more than any other. His philosophy of logic over emotion was inspiring!

Gillshutt, I agree that neurology is almost certainly involved in FM, since the brain is clearly sending out the wrong signals, randomly causing organs to malfunction, glands to misbehave and even probably disrupting gene expression in many cases. But, with some exceptions, I don’t think that is the sole cause. My feeling is that FM per se is just one manifestation of autoimmune dysfunction (you quite rightly pointed out FM is not a disease), essentially a subset of a wider syndrome I think of as autoimmunitus. It’s a gut feeling for now but I’ll come back on that when I have organized my thoughts. If that is the case then it may turn out that not all those diagnosed with FM are in fact suffering from autoimmunitus, so we would have to redraw the boundary lines.

Shaz, your quote of 10 million FM sufferers in your excellent posting ‘One to show the non-believers’ brought a lump to my throat, as did my hearing of Lynn Gilderdale and also reading The Spoon Theory. I won’t mention the tears in case you all think I’m a sissy!

Finally (phew, you might be pardoned for thinking!), a practical suggestion for those of you who worry about miss spelling. Why not write your posting in a word document which will spell-check it for you, and when you have got it right just copy and paste it into the Forum. My spelling is atrocious and that’s what I do.

Warm wishes
brimstone

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Re: A concerned outsider

Postby gillshutt » Thu Feb 18, 2010 7:28 pm

Not sure about the organ malfunction :shock: not something I've come across.
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Re: A concerned outsider

Postby Brimstone » Fri Feb 19, 2010 1:39 am

Gill

You’re right, no organ malfunction in the case of FM, but the more serious of the two forms of scleroderma (systemic scleroderma) causes internal organ damage and also damage to the skin and blood vessels around the fingertips due to the overproduction of collagen. That is in addition to the pains and fatigue that make it similar to FM.

Causes not known and could be purely biological, but it is classed as a connective tissue and autoimmune disease(sic). In future postings I intend to postulate the mechanism of a possible feedback link between the brain and the autoimmune function. Just some loose ends to tie up first. (Don’t worry, I’m not going to say it’s all in the mind. I don’t believe that!)

If OK with you, now that I have introduced myself, I will continue this thread in the ‘Living with Fibromyalgia’ forum.
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