Research?: Can anyone tell me how to... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Research?

gilford profile image
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Can anyone tell me how to access the latest research on fibromyalgia? As I feel there is three areas that need to do it - rheumatology, endocrinology and neurology. Fibro always seems to come from a rheumatology point of view but what about the fact that the thyroid and vitamin deficiency seems to be prevalent which surely are endocrine problems and the pain receptors seem to have gone haywire with fibro which surely is a neurological condition?

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gilford profile image
gilford
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TheAuthor profile image
TheAuthor

I would look on the US medical websites for this sort of information as it seems to me that the US are ahead of the UK in research and treatments.

Good luck

Ken

queen-of-bedlam profile image
queen-of-bedlam

Excellent point. I'm lucky to get to see one MD. All of the areas you mention ed need to be coordinated. The specialists don't seem to care to communicate with each other.

skybluepink profile image
skybluepink

To Mr Frank Rice Re ; Fibro Research

Just seen your article on fibromyalgia .I am uk based 71 yrs diagnosed by Prof ***** uk C******** St London & NHS B**** [ may have retired?} This was before my MI when had classic heart failure symptoms targeted yet ignored by Government .

The MI was 12yrs ago Royal Free revived with angioplasty & only last year did they confirm Heart Failure still with no Specialist assistance when the Trigger points were all my weak areas re: infection/inflammation .As it was weak heart pumping my symptoms aren’t surprising but are ignored following tests that don’t show the problem even on day of MI .I suspect Microvascular as was also told by Prof Malone Lee Urodynamics who saw 3 weekly for targeted antibiotics of sepsis connection re spinal spasticity .This wasn’t his remit so he gave me the Graph yet didn’t recommend the RNOH investigating as suggested by the private MRI [ over 30 A&Es & GPs had refused to Test

They implanted a Reveal device as comatose daily on ingestion with pulse dropping especially when sedated under 80 so have had problems with the dental [ anaesthetists] It did however Reveal PAH Dr C****** on implantation for which just received diuretics 3 yrs after oedema became acute now lipo-lymphoedema stage 2[ St Georges] with no treatment , testing , monitoring or planning??!! I suspect born with cellulitis as one of first to get penicillin & the pill.

As Late Mother had MID severely effecting movement & cognition & there are many cancers, heart & hormonal problems both sides of family Surely a genetic test is in order.

Sincerely

PS I also have hidden underlying spina bifida of no consequence according to NHS This was found in research in my 20s at Royal Free London Prof Moorhead & Brumfitt 1969 amongst abnormal EEG scarred kidneys , fatty liver, neurogenic bladder one ureter too many & continence problems.

You may find my Notes Tests & Results of interest { Royal Free based ] moved from London 5 yrs ago & Having problems accessing antibiotics & appropriate assistance when acute ?!.

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