Fibromyalgia Is Not All In Your Head, New Resea... - Thyroid UK

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Fibromyalgia Is Not All In Your Head, New Research Confirms

RedApple profile image
RedAppleAdministrator
16 Replies

As lots of members here have been told they have fibromyalgia, I thought it relevant to post about some new research relating to this controversial diagnosis.

Fibromyalgia Is Not All In Your Head, New Research Confirms

Researchers discover a rational biological source of pain in the skin of patients with fibromyalgia

[June 14, 2013, Rensselaer, NY] – Fibromyalgia, a painful condition affecting approximately 10 million people in the U.S., is not imaginary after all, as some doctors have believed. A discovery, published this month in PAIN MEDICINE (the journal of the American Academy of Pain Medicine), clearly now demonstrates that fibromyalgia may have a rational biological basis located in the skin.

Click this link for the full text of this 'News Release'

intidyn.com/Newsroom/articl...

The link below takes you to a 'description of this study for the general public' (which is where the picture above is taken from)

Women with Fibromyalagia Have A Real Pathology Among Nerve Endings to Blood Vessels.

intidyn.com/Newsroom/articl...

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16 Replies
rosetrees profile image
rosetrees

I realise you didn't write the headline, so I'm not having a go at you. But it has to be one of the most ridiculous, insulting headlines ever. If I have a pain in my finger, I have a pain in my finger. If I have FM (which I don't) then I have FM.

Ok, your doctor might not know what's causing it. But it's still FM. Just like a headache is a headache or a sore throat is a sore throat. I don't need research to tell me headaches exist - I need to know what CAUSES them.

helvella profile image
helvellaAdministratorThyroid UK

From the first link in the blog:

Fibromyalgia, a painful condition affecting approximately 10 million people in the U.S., is not imaginary after all, as some doctors have believed.

Well I never! How on earth do we get to the position where doctors see 10,000,000 people turn up at their surgeries with similar symptoms and explain that by saying they are all suffering from the same imaginary pain? Yes, I do think it is the doctors who are suffering from delusions and seeing imaginary causes, not the patients suffering imaginary pain.

Rod

PinkNinja profile image
PinkNinja in reply to helvella

Frightening, isn't it? And I thought doctors were supposed to be clever. A scientist or analyst would never get away with missing such a definite pattern so why do the doctors? *sigh*

marmaris profile image
marmaris in reply to PinkNinja

As awful as it may sound wouldn't it be nice for them to feel the actual pain of this condition for a day, and then let them come up with some cure or pain relief and find out the cause of it. Guess they wouldn't be saying it was all in THEIR heads then.....

PinkNinja profile image
PinkNinja in reply to marmaris

I quite agree!

vajra profile image
vajra

It's a similar situation to the highly irrational use of by practitioners of TSH/T4 blood test results to assure patents that they are in thyroid terms 'normal'. The problem that so many suffering from hypothyroidism have fallen foul of....

Say there's for example ten variables known to determine the correct functioning of a given system, and the technician has available a test for three or four of them. (aka the thyroid blood tests)

It's perfectly rational for him/her to conclude on finding that the result of one or more of the tests is out of range that all is likely not well.

It's 100% irrational to conclude that the reverse is also true - that finding the three within range is proof that the system is functioning correctly.

How could that possibly be the case when six or seven variables have been left untested, and when any or all of them could be the cause of the problem?

It becomes even less rational if not only is there no test available for the other variables, but the technician doesn't even understand with any certainty how the system works - or that the available tests are not necessarily 100% reliable.

Yet time and time again patients displaying very obvious symptoms are assured that they are 'normal' and sent on their way untreated.

They are in effect (and often overtly) being told that they are imagining their symptoms. Only for them to often to run into the multiplying, increasingly irreversible and life destroying effects of chronic hypothyroidism.

We see time and again that complaints of symptoms in situations where medicine doesn't understand what's happening, or have an effective treatment available are deflected by being put down to the patients imagination. Or depression, or whatever...

It gets worse. Even when tests are available the numbers tend to be agressively used as black and white cut off points determining illness/perfect health - despite experience and research often in the case of thyroid showing that the stock limits are not always a reliable indicator of this.

This wouldn't happen in a caring system. Our bureaucratised and profit driven health systems have meanwhile left the patient powerless.

There was perhaps a lot to be said for the old Oriental system where doctors didn't get paid until they delivered a cure.....

ian

greygoose profile image
greygoose in reply to vajra

Very well said!

merissa profile image
merissa

Well said, so true In deed, how did patients come to get fibromyalgia in the first instance.

vajra profile image
vajra in reply to merissa

Ta Merissa. The good news in the general sense seems to be that there's sacred cows in mainstream thyroid practice falling over everywhere - research keeps on popping up to validate more and more of what the system has denied, but patients and progressive practitioners have observed for years and years.

I guess we should be pleased, but given what so many of us have suffered as a consequence of blind adherence to lab values/ glib assurances that thyroid replacement is a simple matter/projection of all sorts of unfounded motivations on to patients when their reality fails to fit the dogma there's times it leaves me hopping mad.

What's less clear is how long it's going to take for the major gaps in understanding that are also being revealed to be filled (it's not necessarily a high profit branch of medicine), and for the research to be integrated into the real politik of medical practice.

What's also unfortunate is the likelihood that as information emerges it will be piecemeal absorbed, but that there is unlikely ever to be an explicit acknowledgement that there were problems. An 'oops we got it wrong ' moment if you like.

Not given the legal, political, social and bureaucratic context.

Meaning that the opportunity to learn from developments like this is likely to be greatly reduced....

ian

vajra profile image
vajra

PS I should have added the word 'commercial' to the list of contexts arising in the second last paragraph...

Marz profile image
Marz

...I still go with Dr Lowe and his thoughts on FM....

vajra profile image
vajra

That's a very fair comment Marz.

What's worrying about that piece is that it doesn't seem to link fibromyalgia with hypothyroidism, and that there is talk instead of more drugs and treatments.

This is just me surmising - but since a commonly reported consequence of hypothyroidism is reduced heart output and consequent withdrawal of blood flow from the skin (it's said to be why sufferers tend to break out in spots on the back and the like) to protect blood flow to core organs:

Might it not be reasonable to suspect that hypothyroidism is in fact messes with blood flow in the region of the capillary and sensory systems described - and that it's this that causes the pain experienced by fibromyalgia sufferers?

It'd be unfortunate if it was yet again to turn out that drugs are being developed to turn off what is in fact a basic physiological response/protection mechanism responding to a more fundamental problem elsewhere in the body.

That the symptom is again being targeted rather than the underlying cause of the problem....

ian

merissa profile image
merissa

Ian, your analsis is brilliant and very true, I was diagnosed with fybromyalgia/ also hypothyroidism ( just) However I have never excepted the diagnoses of fm, for the simple reason there was no known cause( until recently) as you mentioned in your blogg, there is no mention with the conection with thyroid and FM, still scratching my head, saying that as hypothyrodism ( like you mentioned) does indeed mess with our blood flow and causes sensory nerve pain.

There will be new drugs to supress the nerve pain, but I am in agreement with you interms finding the root cause, for both conditions, FM, thyroid. I feel then only patients will become well, without the cause being discovered we continue down a road never knowing only later on discovering that the drugs we have taken have caused more issues.

Well on a positive note, at least FM may have a cause, just need to find it.

Merissa x

vajra profile image
vajra in reply to merissa

Sorry M - i've just replied but mistakenly to the thread in general

vajra profile image
vajra

I was just speculating Merissa, and it may or may not prove to hold water - but thank you. :)

My thought was just that the scenario (relating to capillaries and nerves in the skin of the feet and hands) described in the posted article as causing fibromyalgia might well be a consequence of hypothyroidism.

You're probably familiar with the work of Dr. John Lowe. (recently deceased) He was for me one of the pioneers of the progressive handling of hypothyroidism. His material (even though i could never get a local doctor to take it on board or move beyond the stock blood tests and declarations that my 'thyroid' was normal despite obvious symptoms of hypothyroidism) set me on the road to eventually getting fairly well sorted out.

That was going forward after a thyroidectomy in 2005 for a thyroid cancer. (suddenly everybody was keen to pour thyroid hormone into me to suppress my TSH) That was back in the late 1990s.

He did enormous amounts of work to link fibromyalgia to hypothyroidism, and helped many people. Here's a piece by him on the Thyroid UK site that specifically points out that research has for years ignored the ample evidence of this connection in favour of developing yet another money making drug to treat the symptoms. thyroiduk.org.uk/tuk/relate...

He goes on to in great detail set out the correlation of symptoms between the two supposedly separate conditions. Skimming it just now i notice he even mentions that massage is known to help relieve the symptoms of fibromyalgia - perhaps another argument in favour of the suspicion that it may be linked to blood flow in the skin.

I've luckily not suffered from fibromyalgia (it's a lot more common in the ladies), and so don't have the experience to move beyond speculation - but it's very hard to ignore what he has to say. Especially given his track record on treatment of hypothyrodism....

ian

merissa profile image
merissa

Thanks Ian. Dr Lowe was a legend and he felt hypothyroism and fybromyalgia have identical symptoms, I wonder if the scientific evidence in the future will be in faviour that fybromyalgia in my opinion is untreated hypothyroidsm and like you expressed there definetly a colleration between the two. Another fact I have read is that fybro is the cause of a untreated or undected injury. The mind bogles, think I will still to Dr John lowe.

Thanks for the link

Merissa

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