I am one. We are many.: Hi everybody. I... - Fibromyalgia Acti...

Fibromyalgia Action UK

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I am one. We are many.

Uhurakate profile image
4 Replies

Hi everybody. I wonder if there is a way of creating a concise encyclopaedia of people with Fibromyalgia's experiences of treatments that work. Or don't work and the reasons why.

Also perhaps a register of all of us who have Fibro and M.E. One person has so little effect, we are many. I am tired of not getting the right treatment, and want to make Fibro more manageable, for everybody. Actually I want to make it a thing of the past, but more manageable will do for now.

The fact that we are seen by health professionals individually I think minimises the impact of these disorders. We need to be more visible collectively.

Any ideas on how to do this?

Cathy

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Uhurakate profile image
Uhurakate
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4 Replies
Amanda profile image
Amanda

I think that having a social drop in in each town would be great,I nearly started one but my house is so tiny I wouldn't fit many in!

ladymoth profile image
ladymoth

Pubs will usually provide a small room free for meetings, providing that people buy some food and drink. (not necessarily alcoholic)

I agree it would be nice to make some sort of repository of known fibro facts - maybe we should find a willing research medic to help us?

Moffy x

This is the big trouble with fibro ... Not every medicine suits all not every treatment suits all some people have flares, some people have constant pain .. Some have fibro on its own you have m.e. I have arthritis... I have my fibro manageable but its taken years of trial and error with meds and giving up work and nearly every hobby i used to do and and making myself pace... But what I have had to do to achieve this level of constant but manageable pain others can't ... They can't give up work.

I would love there to be a cure .... I would lobe meds to work to make me pain free but for now I just wait for the research to carry on and hopefully find some answers...

Sorry I don't have any answers I wish I did :)

VG x

LindseyMid profile image
LindseyMid

The issue with treatments is that one person may say that a treatment helps their Fibro, when actually it helps them because they have arthritis or something else. Or someone may feel that a treatment helps them and it's a placebo effect.

That's where medical evidence comes in. The idea is that you take large groups of people with a defined diagnosis, try them on a treatment, compare them to people taking a placebo (ideally without anyone knowing who is taking the placebo and who is taking the actual treatment) and then see what comes up.

There isn't always enough evidence to say something will help, sometimes because there isn't funding for the research. And that's where organisations like FibroAction - which has a core aim of making reputable, up-to-date and evidence based info about Fibro more readily accessible - use expert opinion from doctors who have been treating thousands of patients.

A big part of the problem with Fibro is that most people do not only have Fibro. It's well recognised that targeted treatments work best, whether it's for pain management or treating bacterial infections, but with Fibro many people are unaware whether their most problematic symptoms are caused by the central Fibro, something related to the Fibro that needs a different treatment (such as myofascial pain) or something else (such as vitamin D deficiency or arthritis). Until you have an accurate and comprehensive diagnosis, you cannot target treatments and they are likely to have limited effectiveness.

If you want to help improve matters for people with Fibro in the UK, please get involved with FibroAction. Providing information and education and funding research all costs money and takes time. There are around 2 million people in the UK with Fibro - if we all raised money for Fibro research and education, who knows what we could achieve? For more info, see: fibroaction.org/Pages/Get-i...

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