Fibromyalgia study results - Pernicious Anaemi...

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Fibromyalgia study results

WiscGuy profile image
8 Replies

Results of a study looking at new drugs in treatment of fibromyalgia has been published. In a way, this study is another example of why medical research makes so little progress: current medical research tends to focus on drug development rather than on healing, and drug development nearly alway relies on changes in chemical markers. "Significant changes in FIQR and PSS scores...". "Significant" refers to statistical probability that changed measured were due to the study intervention, rather than occuring by chance. "Significant" does not imply that changes are meaningful improvements for patients. And as we all know from our experiences with B12 deficiency with neurological symptoms, chemical markers often have little correlation with patients' symptoms. And, in my cynical opinion, there is small chance that results of the study will result in low-cost supplements, rather than high-cost patented drugs.

hcplive.com/view/igf-1-augm...

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WiscGuy profile image
WiscGuy
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8 Replies
Nackapan profile image
Nackapan

I'm very wary of a fibromyalgia diagnosis as seems to be a term of a collection of symptoms with cause unknown.My daughter had this 'label '

It proved to be damaging as further tests halted.

She was put on many drugs to try and ease the pain.

Which clouded things more .

Yes I agree more time looking for a cause then research into more drugs .

Same old story specialists staying in boxes and noone joining the dots between departments.

Until by chance for my daughter in A nd E .

A 'general medicine ' consultant.

Took an interest .

A breakthrough .

Fibro removed from her medical notes

Jillymo profile image
Jillymo in reply toNackapan

Myself and my daughter are both labelled with fibromyalgia but then over many years I was also diagnosed with M.E, chronic fatique syndrome, fibromyalgia and now functional neurological disorder ! I would much rather they were honest and told me we haven't a clue.

Or maybe some bright spark might look at my case realistically and take note ofmy autoimmune conditions and as you say join the ruddy dots. I agree with WiseGuy less time is needed spent on drugs to ease the damned condition and more money spent on finding the root cause,

Nackapan profile image
Nackapan in reply toJillymo

My daughter given all the above labels like you and your daughter .Over used perhaps ??

Actual diagnosis ;

PA assumed as megabolistic anaemia and very low b12 and folate and vit d and ferritin.

Ehlers Danlos ( HEDS)

P.O.T.S

and now Polysystic Overy syndrome.

Horrible conditions.

At least the correct 'label ' to treat correctly.

Would still be stuck with other labels if didn't push push to be seen by more and more doctors / hospitals.

So young to be put through so much testing and pain.

A handful of excellent doctors.

Too many awful consultations.

She's still suprised if a doctor kind and listens .

Far more accepting and tolerant than me but then I've' got her back' if needed.

Keep sane Jillymo .

I'm trying to let go of of all the awful stuff and move forward.

No idea if I will succeed .

Sense of humour essential .

When masked sitting waiting for bloods to be taken in a hospital outpatient room.

The man clocking us in was visibly bored .

He asked if he could play some music.

We all nodded .

Like some odd film.

What played .......

🎶 There may be trouble ahead....

Let's face the music and dance ....

We all smiling under masks and swaying with the music.

The man very flustered trying to turn it off apologising...

In my eyes even funnier 🤣 😂 😭

Jillymo profile image
Jillymo in reply toNackapan

My daughter also has polysistic ovaries together with oestrogen dominence - maybe this is something your daughter could look into.

She has totally lost all faith in the NHS and has paid out thousands of pounds on private treatment. It breaks my heart to see her tread the same long paths I have trodden

Keep sane you tell me - I am still waiting results of the biopsies taken when they did the endoscopy. It was weeks ago I had the proceedure done ! It is beyond ridiculous.

It's a wonder you didn't pee yourself with laughter when the music was played whilst waiting for your bloods to be taken. 😂🤣 I can vision you all sat there swaying.

It's a good job we still have a sense of humour.

Vitb12___ profile image
Vitb12___

is there a link between low b12/pernicious anaemia & fibromyalgia?? I’ve just been diagnosed with fibro but had very low b12 for a good few years now??? T.I.A.. xx

Nackapan profile image
Nackapan in reply toVitb12___

Undiagnosed low b12 and folate often gets a fibromyalgia label

Vitb12___ profile image
Vitb12___ in reply toNackapan

what is the best way to get myself diagnosed properly?? It’s getting a little ridiculous to the point it’s affecting daily activities..

Nackapan profile image
Nackapan in reply toVitb12___

It's wading through eliminating other things. If your got a low b12 it may be a matter of time

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