FibroAction – A new national UK Charity for Fibromyalgia

As some of you may know my wife has a chronic condition called Fibromyalgia.  She has had it for about 6 years and spent much of the first 5 of those in serious pain, amongst other symptoms.  Part of the reason she suffered for so long is that there is a distinct lack of awareness of the condition in the UK.  To the point where many GPs do not even believe it exists.

However, she eventually managed to find the information and support needed to get her Fibro under control. And is now in the position of being much improved and being able to work and so has chosen to work to improve conditions so that other people do not need to suffer unnecessarily as she did.

Fibro awareness in the UK desperately needs to be brought into the 21st century and to this end she is now heading a new national charity called FibroAction.  With the help of other Fibro sufferers and carers, including myself, the charity hopes to

[E]ducate people about Fibromyalgia Syndrome (Fibro), including people with Fibro, their family, friends and carers, healthcare professionals and the public at large, as well as providing support to patients.

With a long term vision that

[T]he needs of people with Fibro are universally recognised and met, with fast and accurate diagnoses and easy access to optimal treatment programs available to all people with Fibro.

To most GPs and patients, the diagnosis of Fibromyalgia is the end of the care pathway.  There is a widespread belief that there is no treatment for Fibro and that nothing can be done to help sufferers and that the outlook is bleak.  This is patently false.  Currently there are 2 FDA approved drugs for Fibro, Lyrica (Pregabalin) and Cymbalta (Duloxetine), plus many more that are being used off label, including Mirapexin (Pramipexole) that have had promising results in double-blind trials. 

Fibro has such wide ranging symptoms that it is important to eliminate all co-morbid conditions before starting to treat Fibro pharmacologically and there are also other ways of helping Fibro that form part of a multi-disciplinary approach to treatment.  Myofascial tension can be a major cause of pain in Fibro sufferers that, whilst isn’t a direct symptom of Fibro, can be greatly amplified by it.  Seeing a massage therapist or myofascial release specialist can help relieve this pain.  Managing stress is also important – stress isn’t good for anyone, especially if you have health issues – and when you have a condition related to changes in the brain and nervous system like Fibro is, stress can quickly worsen symptoms. Problems with anxiety and depression, possibly caused by having such a debilitating condition, can also make dealing with symptoms a lot harder.

Amongst the existing organisations in this country that do deal with Fibromyalgia there is a misconception that there is little research being undertaken.  However this is not true. There is a huge amount of research being undertaken.  In fact at the recent EULAR (European League against Rheumatism) annual European congress there were over 90 abstracts from research papers submitted that dealt with Fibromyalgia Syndrome.

So anyway.  If you have Fibro there is now some hope and an organisation that is out for your best interests.  If you’ve got any questions we are always ready to answer them so ping us an email.

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