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The UKFibromyalgia Forums • View topic - Fybromyalgia does not exist - but it's a killer



Fybromyalgia does not exist - but it's a killer

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Fybromyalgia does not exist - but it's a killer

Postby snorbion » Sun Jun 17, 2007 12:29 am

Fybromyalgia is nothing more than a collection of symptoms. Fybromyalgia is a medical term for “we don’t know but here’s a label anyway”. Am I sounding bitter well I am! My very fit and healthy wife of 30 years was given such a label 4 years ago, she has had deteriorating mobility and increasing pain which went to her chest last October – the classic heart test did not show any heart disease or angina but the chest pains continued. Sadly she died 3 weeks ago. Cardiomyopathy underlying cause unknown. We have spent thousands of pounds on charlatans and quacks and consultants we left no stone unturned. All say my wife’s death was sudden and unexpected I personally am not so sure.

Don’t accept this label called Fybromyalgia it is misleading, it leads to the wrong things and may ultimately be fatal!
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Postby Ally » Mon Jun 18, 2007 1:46 pm

Dear Snorbian
First of all can i say how very sorry i am for ur loss. You have every right to be angry. Anger is a natural part of the grieving process and often it is fuelled by lack of information and explanation from the medical profession which seems the case here.
When we fall ill, quite naturally we turn to the medical profession for help and answers, they do of course provide that help to the best of their ability and answers are a result of their experience. Sometimes those answers are a long time coming and as is sometimes the case, there is not one definitive answer.
Unfortunately, some problems are not as black and white as we and the doctors would hope and so a great deal of pain and frustration is created on all sides.
At a time when we need and of course deserve answers, as in your own personal case, there can be very few and im afraid that this is when we discover the limits of our very human knowledge and experience.
Over time of course, we progress and learn more and more from situations such as yours, so each and everyone of us contributes to the future help of others.
I am not remotely medically knowledgeable but i did do a search on cardimyopathy and read that there are a few diff types with various causes but of course, there still exists problems with specific diagnosis of the cause.
I dont know who or how the diagnosis of Fibromyalgia was made in your wifes case but again there are a number of different answers to why she also experienced heart failure that may or may not be linked to Fibromyalgia.
Im sure we can all appreciate and understand how much pain this situation and ur loss is causing you and as there is no measure of how long you will have to wait for answers that satisfy your questions perhaps it would help if you had some professional support for your grief, assuming of course you are not already doing so, which in turn will help you through ur wait?
Grief councelling cannot and does not take away a persons natural response and right to grieve for the loss of a loved one, nothing can or should do that but as ive said, it will help to support you whilst you come to terms with ur loss and in your case, the sheer frustration of not knowing why this happened to u both.
I do hope that my words have not caused u any offence and offer some form of comfort and help and im sure everyone who visits these boards extend to u their compassion and heartfelt sympathies.
Do keep in touch and let us know how things progress.
Kindest Regards
Ally
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Postby Min » Fri Jun 22, 2007 1:37 pm

Please accept my condolences at your sad loss snorbion. I can understand your anger at the medical profession who failed your wife so badly; it sounds as if she may possibly have had fibro that affected her heart muscles.

I know that many people with the sister illness M.E. (many of us have a diagnosis of both, & some doctors believe they are the same illness) have heart conditions that can prove fatal, & that these often go undiagnosed.

Your love for your wife shines through your post, she was a fortunate woman to be loved so very much. I wish you the strength to cope without her, & hope that you can find comfort in the knowledge that you did all you could for her.
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Postby snorbion » Fri Jun 22, 2007 9:44 pm

Thank you both for your kind words.
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Amyloidosis not Fibromyalgia

Postby snorbion » Fri Nov 09, 2007 3:34 pm

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Postby KateXXXXXX » Sat Nov 10, 2007 1:56 am

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