A curiosity with questions

[TabataRossa]

Good evening everyone,

I know how difficult it can be to conduct research for fibromailgia, I have read so many abstracts on the Pub Med website but I wanted to ask you if you are aware of studies such as:

1) measuring an enzyme or antibody responsible for a specific biological process that leads to the disease;

2) of histological type (eg immunohistochemical analyzes on patient tissues;

3) genetic or otherwise in your state.

Thanks

[desquinn Partner Volunteer FMAUK Trustee]

1. nothing measurable or defined as yet

2. nothing as yet

3. some evidence of genetic predisposition / familial link but not identified to a gene as yet.

[TabataRossa in reply to desquinn]

good morning, thank you very much

[Hidden in reply to desquinn]

I agree. I was told that stress is a great factor.

[LisaSnow FMA UK Volunteer]

Desquinn is exactly right and they are the reason why in certain countries, fibromyalgia is not recognized as a "real" disease. Furthermore, having no good data to infer causal and disease modifying factors makes it difficult to develop better (more specific for root causes) treatments and preventative strategies. Our challenge is three fold, fibromyalgia first needs better recognition by the medical community so patients can be taken seriously, we also need research to expand which requires government and policy making parties (clinician and insurance companies) to take this disorder and associated disabilities seriously. Research takes money so it is going to be a tough battle if they don't see it as a real public health problem. Lastly, we need better biomarker to be developed (again, needs $ to research and development biomarker) so better and more objective disease monitoring can become a reality.

Sorry for my rant but your questions are really excellent because they shine light light on why so many continue to suffer in the dark. We must push to advocate for more research and more education on this disorder.

[Cat00]

I too have read many a Pubmed article on fibro, very frustrating as they only ever seem to look at 30 people at a time. Lots of which would be quite interesting stuff but without funds to extend the research to greater numbers not of much use to us!

[desquinn Partner Volunteer FMAUK Trustee in reply to Cat00]

small samples allow a cost effective way to move from a hypothesis to a theory. But the result needs to be strong enough to allow it to be replicated or extended.

[Hidden]

I’ve never met or heard anyone who have the same issues as me with Fibro. We all share the same ache n throb, but with Fibro. The volume knob is turned right up. What Evers wrong with you in a small way, will feel inflamed as the nerve endings reach the brain. This will also cause a echo of the pain which could go on forever. Example ( tickle in my calf muscles means I m gonna get cramp in my whole leg, as the nerve messages my brain. My brain messages back, and it doubles.)

When I m lying still resting. I don’t hurt as much as when my blood pressure goes up to move. This I ve been told is the capillaries stretching in your brain causing synaptic and massed misfires.

I’ve based my future on this outcome and it works. To a point.

Fibromyalgia is general term for phantom nerve pain. As

IBS. is to bowel issues.

There will never be a cure. Only drugs.