Fibromyalgia is in you head - Fibromyalgia Acti...

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Fibromyalgia is in you head

does-the-NHS-work profile image

Des has asked me to look at Facts.

Here is a Fact..

What we all Know from a large majority of the posts on here is that "they" (the medical advisors) say fibromyalgia is in you head? So, What does that mean?

150 Replies
LisaSnow profile image
LisaSnowFMA UK Volunteer

Could you provide proof to your statement ".....that "they" (the medical advisors) say fibromyalgia is in you head" please. I read the forum and I don't see where you got that conclusion from.

My GP.

Your GP or "the posts on here" = this forum? I'm confused...🤪

GP, say's in you head. A large amount of post on forum show issues with Anxiety, that I think is in the head?

What expertise does your gp know about fibromyalgia, I’m interested to know? , he must be some sort of guru. I’d look at your username to refer to your Dr. As for quoting posts on here saying it’s in our heads and the word “fact”. Is condescending in my opinion, you have little idea to all the different and vast symptoms experienced by suffers of Fybromyalgia and neither does your Dr.

Well if a GP says it is in your head, than I assume they are qualified to explain that my fibromyalgia symptoms are controlled by my head, I take drugs for anxiety. They say my Mental Health and Pain are connected, google it!

If the anxiety drugs help your fibro exactly as much as your anxiety, then that might "prove" that in your case your fibro is all and only anxiety. But I doubt it! :-)

"in your head" is not a qualified statement, simplified much too much. If that is a direct quote, I think it disqualifies your GP, at least at that moment. Unless it's what you needed to understand and act upon it.

desquinn profile image
desquinnPartner in reply to does-the-NHS-work

First of all your are discounting what medical professionals say but agreeing with the statement from one you agree with :)

But more importantly in one is saying that anxiety can not be connected to fibro. It is a modulator in chronic pain and will make it worse. But anxiety does not equal fibro but people with anxiety may be more at risk of developing fibro. But not all, maybe not the majority and basically it is not a simple linear relationship.

Being connected does not mean they are the only players. Emotional state, environment, suggestiveness and basic physical makeup are players in chronic pain. There is a trial where they gave fentanyl to people at a fixed rate, said they stopped it and peoples pain increased although the dose was the same. Pain scores reduced when they said they increased when they kept it the same.

Please take onboard that even if you can simplify everything for your situation it is not the same for everyone.

When your GP wants to treat each symptom individually over the years and you read something that fits those symptoms so closely it could be me, you realise GPs are as fallible as the rest of us.

Fibromyalgia is in the head since that is where we record our aches and pains, suffer anxiety, depression, and so on.Are GPs afraid to prescribe them because of their addictive quality or financial consideration?

How many people took part in this "trial"? UK, USA, ?

There are people who would benefit from Fentynal if only they can get it.

It is no wonder people look towards illegal substitutes to help them.

desquinn profile image
desquinnPartner in reply to LordGodAlmighty

the fentanyl trial is discussed in this video with Prof Irene Tracey including a lot of other information that is relevant in this discussion.

my.livewellwithpain.co.uk/f...

I would really like to know who 'They' are and their address, so I could kick them in the shins! ;)

'They' are responsible for many of the opinions and theories which go round. I find 'Them' Incredibly annoying.

It's rather like the 'Everyone knows!' That annoys me too. If Everyone knew, there would be no need for Forums like this. We'd all be happy and fulfilled.

I suggest that if your doctor can't help, go find another. Many of the doctors are just cruising until they retire, and can't be asked to keep up with modern thinking. I have known several.

Younger ones are often far more on the ball.

Cheers, Midori

in reply to LisaSnow

I think it starts in the brain ..

desquinn profile image
desquinnPartner

So playing devils advocate I would say:

What was the quote they used? "it is not pain from a broken limb or gash and is instead your brain making it up."

What the GP said could be incorrect.

Medically pain is a construct that is made in the brain or the route of the spine or in the peripheral nerve and then normally transmitted to the brain and then interpreted within the brain.

This is a good video youtube.com/watch?v=1ylbrks...

I have argued with a rheumi consultant at a conference about fibro being all in your head and we parted as friends :)

I would also not agree that a large majority of people on this forum have said that their HCP has said fibro is in their heads. It happens more than we would like and sometimes as expressed above there is some confusion and clumsiness in the language the HCP uses. "Imagined pain" was one of the worst but this could be technically correct but also true of cancer pain and any other pain. Is it the correct language.... definitely not just those two words and probably not in a GPs surgery.

Not entirely, more the medical proof and fact as you say it with the association between mental health and Pain. You know that is true.

P.s give it 10 mins before you reply in case someone else has an opinion!

"In the head" is a very flexible expression, here are the possibilities I can think of off the top of my head:

1) Docs not believing us, thinking we've made it up, which has thankfully become pretty rare, from all I've read on forums. Or

2) about things you've already written about the psychological impact of trauma and stress on fibro, praps mental pain partly turning into physical pain, which is also not generally over-estimated. Or

3) Central sensitisation of the brain and spine as one of the possible causes of fibro. The brain is 'in the head', but it's still real. =

4) Pain generally being a transmitted/-ing process, which the brain = head is part of. =

5) Our pain without (apparent) injury now recently being newly defined as nociplastic, the body apparently "making it up", which again can be understood as "made up".

(3-5 is connected, different ways to say something similar).

The fundamental problem of fibromyalgia, ME/CFS, and some other "invisible" chronic illnesses is that it isn't yet possible to find enough measurable body changes to explain the symptoms. This means the diagnosticians and other docs have to rely on self-reports and acknowledge the limits of medical exams and understanding. This puts them out of their depth. They always have to cope with some uncertainty and also with patients not being able to convey exactly what they are feeling, which makes them fight for something measurable. It's hard for them to get their heads around this. But they are doing well, as far as I read, which is a ton. And the people developing diagnostic criteria are doing a brilliant job to make diagnosis easy, fair helpful and feasible etc. for the docs.

The next problem is: how do the docs distinguish above 5 concepts to their patients so that the patients understand, altho they are fresh to all of this.

And how can a patient, how do I understand when someone is telling me this, and

how, when my body is screaming at me, but a doc tells me there is nothing to be seen that's causing it. How often do we feel we have imagined it, when a flare suddenly stops or we have a moment without pain....

So I think that some of this "in our head" thing is misunderstood and itself turns to be "in our head", a prejudice, meaning it's good to educate ourselves, each other, researchers, docs, medical advisors, insurances and patients, by listening with patience. And good to start with and within ourselves by listening to and tracking our symptoms, our reactions to treatments, to be able to describe and explain them better.

desquinn profile image
desquinnPartner in reply to JayCeon

Would just add that everyone can use clumsy language and also you sometimes need to use the correct language for the person you are speaking to especially when i tis a professional relationship like GP to patient. I can relate it to IT (funnily enough) as needing to find the level of the client and speaking in an analogy that they will get as well as keeping them motivated to stay with you as you explain.

Go to the network share, Right Mouse click on the printer called printer2 and select connect.

These are simple instructions but in windows and IT generally there are about 3 -5 other ways of either explaining it differently or using a different approach to do the same thing. I have been accused of being patronising with not finding the other persons correct level and over explaining after they did not get the 1st explanation. Getting it right first time is a challenge in this example as it is in a GP consultation but with more emotion, more preconceptions and no doubt more opportunity for misunderstanding.

But I can only do my job properly with the correct info and the above example fails when it was printer 3 they were meaning!!!!

Fibro is hard. Expectation management is something the NHS is doing poorly at and communications is something it could be a lot better at. Telling you what a pain clinic can do and what you are going to have happen at a visit would help as well. Telling you why CBT could be helpful in advance to improve the chance that it will.

Also, as JayCeon knows Nociplastic pain is a brand new definition to try and explain the different type of pain we experience. But ignoring what it is, it is crucial to realise that these new developments are happening but also realise that we know very little about the detail of chronic pain within the brain in comparison to other elements like vision. There are lots of areas to improve upon.

I suppose my GP is correct then? My mental health and Pain are connected.

:-) No, I think your mental health is only a part of your pain, not all of it. Also, it's what you make of it yourself: Do you think it fits? Does it help you improve it or does it harm?

I tend to find my worst mental health (ie depression) is due to the sadness and frustration of1. Not being understood by some people

2. Not being able to do things I want/need to do

and

3. The frustration of missing out on my life and all the things I had wanted it to be

I'm sure that there are physical/chemical changes that make me more prone to depressive thoughts, but there are definitely real reasons to be depressed during a flare

JayCeon profile image
JayCeon in reply to Gaballetto

I agree, sadness & depression may be cause, but also effect of fibro (like of many chronic illnesses).

There is another one which applies better to me than the 5 above: As it helps me quite a lot to take quite a bit of the amino acid GABA, a neurotransmitter, and from descriptions of my docs and on the web I think my neurotransmitters serotonin, dopamine, cortisol and also now histamine play quite a large role for my symptoms, the first too low, the rest too high. My sleep lab psychiatrist said when we talked about my GABA is that as it is working long-term and deeply it is not a placebo (a further, 6th possibility of "in the head", in this case of treatments - not). And it is crossing my blood-brain-barrier - so it's getting into my brain, so influencing me "in the head", no. 7 (influence and treatment).

Nr. 2-7 all get a major influence from the head, but are also very clearly "in the body".

desquinn profile image
desquinnPartner in reply to JayCeon

You just reminded me, that from what I understand gabapentin may be acting on the base of the spine. And this area at the base of the spine can provoke / produce a pain response without the "need" to transfer to the brain for it being interpreted. That was my normally comment above :)

Still to get more info on this action as it is not an area I had looked at previously.

The mind & body are so much more connected than all of us are used to thinking - e.g. our decisions being made subconsciously "rather" than consciously, our "self" probably being something imagined and not real. And our gut (micro)biome influences so much, including our mind, many neurotransmitters being produced and influenced in the gut...

It's not surprising the way things are going that there are "a couple" ;-) of misunderstandings or not-yet-understandings floating around.... enough to do without this progress...

Dizzytwo profile image
DizzytwoModerator

For me personally, been flooded with too much information can be just as bad as too little.

JayCeon profile image
JayCeon in reply to Dizzytwo

Momo, could you explain?

Dizzytwo profile image
DizzytwoModerator in reply to JayCeon

For me the brain can become overloaded with too much info. Part of fibro is the fog. Infomation overload can become exhausting.

Not been medicaly trained or been schooled at a university for example. I and I'm sure many others on this forum for example would find the conversation between you and Des, if not impossible then extremely hard to follow.

Also for me personally long posts or replies become almost impossible to read to the end due to my fibro. My brain can just not take it on board and remember the start of such a long post. That also goes for reading books. I have the need to always go back a little and re read something. That can be tiring. And been tired can cause me pain. Its like a domino effect. One thing starts off something else.

so yes for me too much info can definitely be worse than too little.

For me its keep it short, sweet and to the point in language I can understand lol

Dizzytwo your comments describes me to a T! I just can't concentrate enough to read long posts, and I don't enjoy reading books anymore. x

Woodhouse16 profile image
Woodhouse16 in reply to Dizzytwo

You are spot on there i am exactly the same and had this problem all through my life.

desquinn profile image
desquinnPartner in reply to Dizzytwo

shows what a diverse group we are and I know that there are a lot of people that fall into a similar camp. I am fortunate that I am able to digest and remember things but it is not as easy as it was and still frustrates me. But relaying info and communicating about the condition all the time keeps it fresh in my head.

Sometimes short is not possible due to the subject matter but it can also be very hard for me to distil something into smaller chunks and I need to "vomit it out" and then go back and refine it but thats more energy so first pass a lot of the time is what you get :)

Dizzytwo profile image
DizzytwoModerator in reply to desquinn

I completely understand. We are all different. I know that for sure. All I'm saying is after communicating on here for so many years. I do tend to see more people in my camp has you call it, than in other camps.

I also know fibro does not discriminate against those with learning difficulties or mental health issues. And these type of members I feel can sometimes miss out on helpful information simply due to the tone of a post or reply. Simply by been overloaded with terminology they simply can not understand.

This is the camp I tend to be in.

It maybe helpful if we ran a poll on the subject. It may benifit us all in the future when posting or replying. To know how many people suffer from difficulties with information overload. Just a thought.

desquinn profile image
desquinnPartner in reply to Dizzytwo

it is part of fibro so I think you would find the results supporting your suspicion :)

Dizzytwo profile image
DizzytwoModerator in reply to desquinn

Hi Des, yes I know its part of fibro. I have had it for 40yrs.

My point was how many members think they maybe missing out on valuable info due to the long posts and terminology used by some x

desquinn profile image
desquinnPartner in reply to Dizzytwo

There are other sources of info like NHS choices, booklets, social media and infographics etc. Not sure we could address or find out what people are missing and more importantly why. And then how could we address it in a conversational forum with mixed abilities.

Always open to ideas.

Dizzytwo profile image
DizzytwoModerator in reply to desquinn

Look all I am saying is for many people reading yours and jayceons replies it may come across more like sitting for an open University course 😂

desquinn profile image
desquinnPartner in reply to Dizzytwo

I get that and as said elsewhere it is hard to find a language that will be acceptable to everyone. Nociplastic and primary pain are new terms for example that are hard to translate into everyday language and in particular nociplastic.

Also when we have conversations which are about "what is pain" or what is the current research in pain it is extremely challenging to adapt the language to fit for everyone and some of it is at the limits of my understanding and being lifted from PHD or clinical discussions.

This is why things like fmauk.org/glossary can help but equally as you will know I have been accused of being patronising and dumbing things down and treating people like they are stupid....... So there is no winning in this discussion :) :)

Anybody is welcome to ask what does this mean or where did you get that from or is there evidence for that. I prefer that approach and am normally up for explaining further.

Also I also have limited energy and time and I talk in a form that is easiest for me and I have found that my brain comes up with familiar words frequently that are very correct for the explanation but there may not be the simplest ones. Trying to think of simpler ones then hits my fibro fog and cannot get them.

Dizzytwo profile image
DizzytwoModerator in reply to desquinn

Yes I get what your saying Hopefully others reading your reply will get it also.

Sometimes it can be just as exhausting to lower your level of thinking as it can be to up it.

And like you I'm always ready to talk and put my thoughts on the table. I'm not known for been slow in coming forward 😂

We can't all be love buddies. But hopefully we can be kind and understanding to mere mortals like myself 😂😘🤗

JayCeon profile image
JayCeon in reply to Dizzytwo

The lead from the OP was deliberately thought-provoking, but / yet unclear.... So...

Maybe best to steer clear of an OP like that and let the lads do their "scrummage", whilst I personally like to keep clear of tedious "hopscotch," and we all meet on the middle ground of - I dunno, "British bulldog"? ;-)

The "poll" using this thread would be 7 likes for my first post and 9 for yours. But why not keep it diverse?

If I'd've thought this thread were meant to be easy, I'd've invested another 10 minutes to translate it into "easy reading" - for me like desquinn it takes a lot of extra effort. However:

@desquinn & I used lots of paragraphs above like you hinted to BlueTofu.

My longest paragraph is 9 lines, the others mainly 2 lines.

No sentence longer than 2 lines, most much shorter.

And the hardest word I used was nociplastic which I oversimplified and Des then explained. The only other hard words were perhaps 'prejudice' and 'feasible'.

My ideas and language may be overcomplicating, which is my kind of "fog". Not so much the fact that I'm bilingual.

But if you or anyone can suggest how to simplify

I'd be glad to save the diversity here and the possibility of a bit of food for thought....

But again: what do we expect from a thread with such a lead?... :-)

desquinn profile image
desquinnPartner in reply to JayCeon

I really appreciate you breaking this down and also from the perspective of it not being your first language. Also it is not just the lead but the preamble of other threads which will of course coloured some contributions.

But I think this has been quite an engaging conversation that tiptoes around provocative language and concepts.

😀

Di2022 profile image
Di2022 in reply to Dizzytwo

Yes, l agree. For me l need the information to be written in simple terms. I hold down a very stressful and responsible job and l would say l am educated to a fairly high standard, yet the fibro fog blocks my brain. I can’t process information quickly or precisely now and it’s a real struggle when researching Fibromyalgia.

JayCeon profile image
JayCeon in reply to Dizzytwo

I'll try to keep things simpler in future - and repeat simpler now, in case of interest:

OP has explained above that he only asked if his GP is right in saying that his anxiety is the cause of his FM.

Many here instead thought it was about pain mechanisms, general and fibro.

Some thought it was about the doc thinking his pain is imagined, not real.

Some of the reasons "in your head" can be misunderstood:

- Fibro is "invisible" to docs. And even to ourselves.

- So it's hard for docs to explain. And for us to understand what they explain.

3 further possible meanings:

- we are lying (of course we aren't)

- pills can help or harm a bit even if there's nothing in them (placebo / nocebo),

- imbalanced chemicals in our nerves might be part of fibro.

And all the while Fibro sufferers exist in a whole world of pain while having our conditions described to us and why we should be given something that they think isn't going to help even though they do not understand the condition.

Colour representation of fibromyalgia sufferers pain.
desquinn profile image
desquinnPartner in reply to LordGodAlmighty

Playing devils advocate here. What if they know that out of 100 people with strong opioids, they know that after 10 years 10 will have severe complications as a result of them, some may even die. Over half may have little benefit after a year. Others may have minor side effects or increased pain caused by them.

And a very small group that benefit without negative issues. Numbers above are made up but the considerations are not and this is where they as in NICE and heath professionals, are coming from.

But adding on my cynics hat I would say that financial considerations play a part as well but if the evidence on therapeutics is like above then it would be understandable to pause.

JayCeon profile image
JayCeon in reply to JayCeon

Ha! I got more likes for my first longer post... :-P (Yeah, I know... I should've written it that short first time round.)

I'm "losing" a bit, now still only 8 likes vs. now 13 for you/Dizzytwo... But still OK....

Dizzytwo profile image
DizzytwoModerator in reply to JayCeon

I didn't realise it was a contest 😳

JayCeon profile image
JayCeon in reply to Dizzytwo

Hehe - for me not at all! But you had the "poll" idea -and I jokingly admit I'm "losing the poll, but still on the field". And I sighed & laughed when I noticed that the simpler version didn't even get one single "like", although it took me over an hour.... That also shows what Des meant above healthunlocked.com/fibromya....

But it was good practice (& warning for me), & hope my posts are generally more readable now (?)

Deepwaters profile image
Deepwaters in reply to Dizzytwo

I agree. Sometimes the more I read the more anxious I become and the more pain I feel. I am not sure why this is.

JayCeon profile image
JayCeon in reply to Deepwaters

Hmm, Deepwaters, I get that a bit if someone talks stressfully, like some of the debate on this thread, people challenging one another, even if I weren't involved, bit more so since I was. But it's worth it for me, and I still want to be challenged and also "ask back". I don't get anxiety from health information tho: if you mean that, might that be "health anxiety"? Or is like Dizzytwo the stress of finding something hard to understand? When I get that - often enough - I put it aside for a better moment.

Isn't all pain "in the head"?

Pain is simply nature's way of telling you to stop doing something that is harmful to you.

The trick is knowing what it is that is harmful so you can stop doing it.

This is, of course, quite simple to diagnose if you have your hand in the fire but becomes more difficult, the more obscure the source of the pain becomes.

I have only ever once been told that my pain is "in my head"...the obvious inference that it was a mental health issue and my response was "Great...Can you refer me to a psychiatrist please?"

I don't care if the pain is in my head, in my legs, or up my left nostril if it means it can be treated.

onebigvoice profile image
onebigvoice in reply to Carlt

I agree With many here, about pain and what it means when finding out if it Fibro, a flare up or just pain. First is to say, why use the word "Chronic" if its in my head and affecting every joint in my body? If my brain is capable of saying enough is enough then where are all the research people to find the root of the cause in my brain and stop the signals, even if you want to use the terms a miss fire of signals to the brain.

Doctors and any one giving an assessment must realise something is wrong when the person cannot get out of bed, cannot walk, is unable to cook or eat or want to eat because they can't climb the stairs, or are unable to function "as normal" not just normal for you, but just to be normal.

As it has already been stated Fibromyalgia is a recognised condition or illness for years since I was diagnosed back in the late 1990's so why have we not gone forward with the, 1.treatment. 2. diagnosis. 3. the ability to say what it is, as what it is, and not try to give it another name. Shakespear said, " and me" a rose by any other name is not a rose.

Why are we trying to make out that if the brain is telling you your in pain that we want to ignore it and say its in my head. Well for those who don't have it how do you know its in my head when you haven't got it, and causing me so much pain?

Carlt profile image
Carlt in reply to onebigvoice

"Chronic" just means "long term", as opposed to "acute" meaning "short term".

I don't think that there is anything wrong with research into fibromyalgia being associated with mental illness if that leads to a treatment.

Personally I differentiate my fibromyalgia pain from "real pain" though that doesn't mean I don't regard the fibromyalgia as "real", just "unexplained".

desquinn profile image
desquinnPartner in reply to Carlt

Thanks Carlt , I still explain the word chronic in all our external presentations to distance it from pain severity and being widespread. Also used a lot nowadays Widespread persistent pain which is less likely to be misunderstood.

Acute or "present" pain as opposed to persistent pain are maybe my differentiators but not thought too much about it. However, for anyone that has read Stephen Donaldson's "The Chronicles of Thomas Covenant" there is an element where the main character has to do Visual Surveillance of Extremities (VSE) which stuck with me even before I had fibro. He had to to VSE as he had leprosy and things could fall off or more importantly he could have a large gash on a limb and be unaware of it.

It was a device for the plot but always stuck with me and shows that our bodies are very strrange.

Gosh desquinn I read the Thomas Covenant books many moons ago, and I remember I enjoyed reading them, but cannot really remember much about the storyline .............. maybe that's because of my Fibro Fog. 🤔

desquinn profile image
desquinnPartner in reply to onebigvoice

If you have a look at fmauk.org/history you will see some of the work and understanding tracing back to the 1600s and its journey to becoming more understood. But research has increased particularly in the early 2000s to move it towards the brain and the neurotransmitters that conduct pain signals around the body.

During this same timeline and in part because of the work in fibro our understanding of pain has been transformed but we are still in our infancy. Descartes understanding and elements like Gait theory have been pretty much all we had but that is changing.

Fibromyalgia is a recognised condition and as been for many years.

one could say that any pain whatever / wherever it emanates from ends up in your head! Trick is finding what / where / cause!

I think there needs to be differentiation between “in your head” and “in your mind”. The pain centre being in the head means pain is, obviously, dealt with in your head. But psychosomatic is in your mind

desquinn profile image
desquinnPartner in reply to vella

If you watch the lorimer Moseley video above you will see that the distinction is a lot less clear. But even when have philosophical or clinical discussions around pain and its origin there should be no one discounting its reality and its impact.

One of the difficulties in neuroimaging of people in pain is that we do not have discrete areas where the brain lights up to say Pain is here. It lights up in a number of different places and is doing a scarlet pimpernel scale job of eluding brain mappers.

Cars can jog on with a few warning lights until a major one lights up. I suppose one day 'they' will be able to plug us in to a computer like they do cars now and the computer will tell us where the fault lies!

desquinn profile image
desquinnPartner in reply to Sallybones

We are seeing some progress with this and potential prediction via neuroimaging, of groups of people that drugs may work in and what groups they will not. This would improve efficacy numbers and critically patient outcomes if it comes to fruition.

But I remember when we had discussions across communities about a test that would be an objective measure of the pain that people feel and talk of those with the likes of locked in syndrome that would obviously benefit. But the discussion was heated and I was surprised at the attacks against its potential misuse that people were construing. Can see same group having concerns with "computer says your fine" approaches..... Especially if the DWP were the operators :)

Sallybones profile image
Sallybones in reply to desquinn

I think I'm looking far into the future when I say they'll plug us into a computer one day to diagnose but I think it will happen one day and I did say it rather tongue in cheek. But many of the things we thought would never happen / be invented are coming to pass.

My experiences with the DWP have been many and as you may know they possess magical powers at diagnosing you!

desquinn profile image
desquinnPartner in reply to Sallybones

I look forward to a tricorder telling us what the issue is and administering the solution as well ;)

Sallybones profile image
Sallybones in reply to desquinn

Ah ha yes, I had to look 'tricorder' up. Its a long time since I've watched Star Trek.

Trying to read comments way to in-depth to many words here’s my take on it if a doctor don’t know how to fix something and detect pain they feel like all their training and degrees go out the window so sometimes put it as depression of the brain manifesting in to pain then stress and anxiety caused by pain so then back to the brain causing pain from depression as a crazy circle ⭕️ any illness causes us to feel down and have worrying thoughts I don’t believe everything can result from or put one into depression this label is use to much for we don’t know reverse psychology put your brains disfunction to blame so now you walk away feeling unhelped and alone well don’t it’s arrogance and ignorance the lack of knowledge makes people defend their intelligence so have a cross the board use deflection with words like depression anxiety stress you brains play with you their must be one doctor who has this and could train others but it never works like that so you know you and the best help you can find is YOU looking into your self and understand you I do I take time for me I do what I want I stop when I want I don’t push myself ever good day I cherish I hold the feeling of that day and carry it on to the next so for me I look inside my self for answers 🤔🤔🤔🤔

LisaSnow profile image
LisaSnowFMA UK Volunteer

I think fibromyalgia is definitely real. How it affects or brain (head) differs between people and within each of us at different times. That's what makes it hard to treat, there isn't a "benchmark symptom card" to prove what will happen next after you take X for three weeks. For those who believe fibromyalgia is a proxy name for "disease we don't know enough of" they can actually be correct some of the time - for secondary fibromyalgia. For example, a patient with RA without joint swelling, may blame her pain on fibromyalgia, and it could take months for joints and auto antibodies to show evidence of RA. She may continue to suffer fibromyalgia symptoms after RA diagnosis but high probability is that her fibromyalgia is secondary to RA. In others, many never got the work up to get a proper differential diagnosis to get another diagnosis. They will continue to "blame" fibromyalgia for medical problems.

So yes, fibromyalgia lacks sensitive and specific diagnostic biomarkers, so for now it is not only felt in the head but also a "place holder diagnosis" for other conditions, for some people.

Gaballetto profile image
Gaballetto in reply to LisaSnow

The diagnosis you're given when they don't know what the diagnosis is - or, to be fair, when all the known alternatives have been ruled out

JayCeon profile image
JayCeon in reply to Gaballetto

Well, if docs use the diagnostic criteria properly, then it's a diagnosis that describes chronic widespread pain with several accompanying symptoms (the severity of fatigue, waking unrefreshed, cognitive symptoms, and the existence of headaches, cramps in lower abdomen and depression). And the criteria say it's also no longer a diagnosis of exclusion. Just they can't prove it with a test, find the cause etc.

I like this post and agree to a large extent, what I found is that it is hard to know what else is going on once I had the fibromyalgia label, and for the life of me I tried to get more diagnosis. The annual bloods reveal nothing unusual but this is usual with fibro, no other issue perpetrate, so you merrily go along with the fibro label.

For me I find it odd that given my rheumatologist advised me the only meds that may help are antidepressants ok, NSADS and opioids too but antidepressants in the main and only a 1 in 10 chance he said, just got to go through them until you find relief - but none of them gave me relief.

All said if you ever read the webmd medical site, which is largely American, the dosage individuals are taking are 3 - 4 times higher than I was ever prescribed,

Anyhow I am interested to learn what the correlation is between giving individuals antidepressants as first line drugs for fibromyalgia if each individual is not medically assessed for clinical mental health disorders? sounds odd to me.

The fun I'm into is that my 2nd big condition, MCAS, is just a hard to "see" as fibro...

Your question about antidepressants is easy to answer: They have off-label been found to help quite a few people with fibro even if they don't have mental health disorders. I was given amitriptyline, low dose, originally and partly still an antidepressant, altho I definitely do not have one. No-one was saying if this helps then you actually are now diagnosed with depression. It's got to do with the fact that meds help in various directions and various levels, which can cause problems or help. And we and they vary so much that it's worth a try. Amitriptyline hardly helped me either and 8 side effects, so stopped after 4 months...

Thanks for your thoughts, I kind of get it, but antidepressants like SSRI and SNRI groups sole purpose is to give the brain more serotonin or dopamine the happy chemicals, these drugs work to give a reuptake of the chemical to your brain (all in the head again) to boost your good feeling, that's all. so, now getting down to the root of the issues - why boost the happy chemical if you have not mental health disorder or why not send the individual for a mental health assessment?

yes, first line prescribed drug amitriptyline, I had no joy with this either, I took it with pregabalin and it made me very irritable amongst other side effects, I told my GP and she said this has been mentioned in the past.

desquinn profile image
desquinnPartner in reply to does-the-NHS-work

How does paracetamol amplify the benefit of other drugs .... They do not know but they observed it so they use it that wayAspirin is a pain killer but also helps with heart disease.

A lot of drugs are repurposed because of observed effect. thalidomide is being used for cancer and Viagra was initially developed for hypertension and angina.

Amitriptyline does work on serotonin to help modulate pain but is also helpful with sleep and muscle relaxation. Typical fibro dose is much lower than any therapeutic does for depression. 75mg would be the rough starting point for that but typically fibro patients will be on 10-30mg.

Naltrexone is another than sometimes is used on the fringed for fibro but also at a very very low dose. IIRC typical dosage on the BHF for addiction is maybe 50ml but for fibro you are down at 2 -5ml. It has been suggested that for those it works have their natural opioid receptors blocked and LDN clears them to allow natural morphine to work within the body as it should.

as to why on serotonin this may help: ncbi.nlm.nih.gov/pmc/articl.... (not an easy read) But I like to think along the lines of rickets. Diet and lack of vitamin D we can understand and addressing the imbalance helps but otherwise you have pain.

We can be deficient in vitamins so we can also be deficient or have too much of certain neurotransmitters and these drugs can improve the balance.

Fibro is complicated unfortunately.

I asked my GP for LD Naltrexone but she said it is not on the BMA advisory list for prescription to treat fibro?

desquinn profile image
desquinnPartner in reply to does-the-NHS-work

There are only pilot studies although larger one ongoing. It is licensed for other uses but not fibro. That may change with more evidence but you can obtain it on private prescription. Does not work for all.

Yes, I asked for LD Naltrexone too, You can see from the video here evidence is varied, works for some, I kind of find that difficult to chew. As the evidence for a lot of prescribed drugs only have a 1 in 100 chance of working at all, like for example statins, but this is the system what can you do, if its not on the list you will not get it.

I will post a video from Howard Schubiner on PAIN, he talks about therapies which in my opinion now, - that is after trying all the primary meds for fibro antidepressants, all types and anticonvulsants and had no luck over years.

For me therapy is a major part of recovery and I do believe in Recovery, as I am now getting relief, take a look at EMDR, there are a lot of video's on you tube to explain also music that inspires eye movement.

For me it helped to understand how my brain is processing pain, and the tools I now use to ground myself - I am now convinced therapy is my saviour, there are many other types of therapy that have some great results, my psychologist assessed my mental health (not good) then assessed me for the best therapy.

One thing is, my GP did not refer me for psychotherapy despite me mentioning my concerns, When I asked, she openly and unequivocally sent for my referral - you will then by assessed for risk, risk to yourself and others and dependant on this score it can be anything up to a year, I must be bad as the recovery begins🙂

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to does-the-NHS-work

You can ask them to make LDN in capsules. No need to chew. Also, the response rate for statin is way higher than 1 in 100. Not sure how you got that number.

May 5, 2022

MAY 5, 2022 STATIN EFFICACY

As a physician I always question the efficacy of drugs that I prescribe. One of the drugs that are prescribed to Americans on a daily basis are statin drugs to lower cholesterol Recently a metanalysis published in a peer review journal, JAMA Internal Medicine raised questions about the efficacy of statin for lowering cholesterol to reduce heart attacks strokes and all-cause mortality

The findings are important for both the doctor and the patient. The results were misleading The main finding was that the relative risk reductions in all cause mortality, heart attack and stroke were misleading compared to the absolute risk reduction.

The relative risk reduction ( RRR) were shown to be 9 % for all cause mortality, 29 % for heart attack and 14 % stroke. This sounds great for the use of statin for these . Then I viewed the results for the absolute risk reduction

The absolute risk reduction were 0.% for all cause mortality, 1.3 % for heart attacks and 0.4 % for stroke

The authors wrote this “Reporting the reduction in cardiovascular outcomes as RRR without reporting the absolute risk reduction ( ARR) has the potential to inflate the clinical importance of an intervention and can exaggerate trivial associations. “

So the question is —do I prescribe statins to reduce cholesterol ? Or do I reduce or change lifestyles as diet and exercise and use supplements and herbs to reduce cholesterol ? Ok this does not show 100% but pretty close.

Ah, I see, you don't mean the response, you mean the (absolute) effectiveness may be 1%. As I said, in my case statins may even raise my most dangerous lipid, lipoprotein (a). Of course diet, lifestyle should be healthy with or without statins, and supps & herbs can be tried without. My tally is however that despite living extremely healthy in all these areas: a perfect diet and lifestyle and 10 supps/herbs for lipids and other cardiovascular issues, my lipids are still high without the statins. The "funny" thing about quite a few of these supps as well as the meds is that reducing lipids in many cases does not actually decrease the risk of cardiovascular disease, which is a mind screw that researchers, docs and we ourselves need to get our head around, and researchers need to sort it out better.

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to JayCeon

There is no mind screwing I promise you. Coronary including cardiovascular diseases are heterogeneous and multifactorial. Cholesterol is an extremely important risk factor that needs to be managed but other factors like hypertension and even emotional extremes can "trigger" an event. If this category of diseases can be so easily explained then we should all be disease free even as we age, which as we know, is just not true.

JayCeon profile image
JayCeon in reply to LisaSnow

What I mean with mind screw is that for decades "we" have believed that lowering LDL and triglycerides is the most essential factor, but that research is questioning this oversimplification and realizing that certain lipid-lowering meds and supps aren't changing CVD much, as studies had so far only been focusing on their ability to lower lipids.

This is something independent of hypertension and blood clotting, which are unchallenged as factors.

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to JayCeon

Which study?

JayCeon profile image
JayCeon in reply to LisaSnow

Byrne et al. May 2022 pubmed.ncbi.nlm.nih.gov/352... = jamanetwork.com/journals/ja... and the other one was an original investigation by Mortensen et al. Feb 2022 jamanetwork.com/journals/ja...,

The first is the one NHS-work's functional "physician" quoted, partly wrongly.

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to does-the-NHS-work

You are sharing data on "all cause mortality". Remember, we die for different reasons. Statins were made with the goal to reduce onw of the most important RISK FACTORS for coronary diseases (and not all of them died either): lowring of high cholesterols. What you should be looking up is the effectiveness of cholesterol lowering, and not all cause mortality (becasue death can happen from anything including poison, COVID, and car accidents....).

JayCeon profile image
JayCeon in reply to LisaSnow

I agree the physician quoted by NHS-work is writing / quoting some silly things in his blog. fratellonemedical.com/blog/.... a) Leaving out full stops, b) "The results were misleading " isn't appropriately used, c) "0.%" can't be right - there'd need to be something after the 0., d) the ending question (meds or other) isn't necessarily an alternative, it can be both, and e) Fratellone isn't even quoting the source he's referring to. So it appears slipshod and the ending question shows a functional bias, away from meds. (He is a "naturopath" cardiologist in New York.)

Also I read JAMA daily and saw that when it came out this March / May (Byrne et al. jamanetwork.com/journals/ja... as well as another statin "original investigation" showing that as a result researchers are now recommending that older people should be prescribed statins less (Mortensen et al., Feb 2022, jamanetwork.com/journals/ja....

In the meta-review 0.% actually reads 0.8%. Which isn't that small at all, all things considered, like you say. It just needs to be compared to the side effects.

You are questioning the whole meta-review by saying that only the relative risk reduction is important. I agree that it is important, but I also fully agree with the researchers that the absolute risk reduction is also something that's fair to know, be told and considered. So: both.

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to JayCeon

I think you misunderstood me. I didn't say "only" relative risk is important or not. I was referring to the original statement that "drugs are ineffective" and by using "all cause mortality reduction" as evidence for how ineffective a cholesterol lowering drug is, is not just bad like comparing guava to orange, but also a completely false way of making an argument.

JayCeon profile image
JayCeon in reply to LisaSnow

I would like to understand you, but still think I don't yet. :-/

Whilst Fratellone is wrongly inferring that "drugs are ineffective", the 2 studies cited are using "all cause mortality reduction" as evidence to say that statins are less ineffective as has been thought. I can see that you're disagreeing with Fratellone, like me, but not whether you're disagreeing with the conclusion of the studies or like me agreeing, that it is legitimate to use both the all-cause mortality reduction and the relative risk reduction to find a balanced opinion about a med, e.g. for certain subgroups - in this case the studies say: older people, or people with low LDL levels, people with severe side effects.

BTW - as comparison, here is an 2010 study challenging one trial that suggested that the all cause mortality reduction of statins was 20% - quite a difference from 0.8%. jamanetwork.com/journals/ja... This comparison emphasizes how the history of statins makes it important to research their all-cause mortality and bring it into play when considering its use.

I accept your point. Thank you.

My overall statement was really to enlighten those who are relying on drugs as the cure, when in reality the efficacy of any drug does not work in the same way for all of us, - in my personal case none of the antidepressants or anticonvulsants made any difference to my PAIN, I believe now this is fundamental knowledge to help recovery.

And for those reading do not give up, the information treatments and knowledge I now have - and this is another important statement, fibromyalgia is a label it defines all but in reality nothing. Think about it.

Yet, that said my fibromyalgia is PAIN and the only methods I have found to alleviate my PAIN is therapy. And most Pain we kind of own in the subconscious mind.

1 in 100 = 1% is I guess an exaggeration to put the point across. :-) Other meds have been tested more and better than LDN, altho interest in LDN seems to be increasing even in the mainstream, so let's see how that goes. I think statins have a fairly high chance of working (>70%), as so often it's just the side effects which are actually being considered more and more by the researchers. I had extremely low lipids on statins, and they are very high without, my cardio only agrees cos she has a close eye on my vessels. Fibro meds I'd guess have a 30% chance of working, also usually with a high likelihood of side effects, sometimes severe. But the side effects of LDN I've read anecdotally from many can also be severe, no better than other meds at all!

I'm curious about your Howard Schubiner video...

From what you've told us I also believe therapy is going to help you a lot, so I'm happy that you're seen as "bad" enough that you can start this quickly. I also think most of us could be more open-minded about therapy, so I'm very glad that you've opened up on this!

I take the amino acid & neurotransmitter GABA, it's my major supp and mainly increases serotonin. This doesn't improve my mood or anxiety as that is all well from CBT, mindfulness etc., but it helps in 10 areas of my symptoms, like muscle relaxation and seizures....

Here’s a good sentence to hear from a doctor Bearing in mind I hadn’t been to my surgery for anything for about two years

You seem to have anxiety issues about your health you need counselling

Me a lump on my shoulder needs counselling ok my god one doctor with a overload of patients just put it in my head that all my health problems here on are anxiety so myself never entertained that doctor again and became better off

Few years later the lump becomes infected three weeks of antibiotics with only a nurse practitioner having looked at it only having consultation on the phone to my partner showing a photo of it to a chemist to ask about dressing and the chemist telling him to get me to the surgery that day to then find my self being rushed to hospital the following day and as the doctor put lucky not to have septicaemia.

And there was me thinking it was anxiety 😥 so misleading big statement anxiety about health just putting me in a place of self doubt about when to stand up for my self and health this is what happens I am amazing I am me I at times need help I a human so are you doctor but don’t think for one moment that I am not intelligent about my health my body myself I am amazing 🤩

desquinn profile image
desquinnPartner in reply to Lakehouse5830

And this is where clumsy language or poor choice of words can be dangerous. And then after this sort of situation or some other poor interaction with a health professional you are then going to have a cautious approach to the next health professional and be less trusting.

I agree with this a new class needs to be injected into medical training understand how to talk to people to translate your book learning The worst thing that happened to the professional body of doctors was they became distant from patients the family doctor does not exist anymore the doctor that knew you growing up knew your parents I remember we had a doctor he knew mum dad brother and sister he knew me my children now long retired

He investigated a problem he did not just rely on book but he also used his intelligence his common sense he asked questions about life style I even remember him discovering that my dad was wearing his belt to tight and yep sure enough my dad’s back pain went away he also had conversations about general stuff this I guess gave him an insight into his patients their personality

I could not tell you who’s my doctor now would not know if they passed me in the street hence I am in the process of changing to a small practice smaller number of doctors and local to

I no the saying goes don’t look backwards but sometimes when something seams not to be working I think it’s a good thing sense of community not everything can be done online or phone understand this you have a step in the way forward

Unfortunately, doctors know nobody likes the words 'I don't know' so some feel they have to say something, anything. Not always the right/most appropriate things fall out of their mouths - they are only human

I think there was some comment about difficulty following the to and fro of complicated conversation. I had to stop because of this. I apologise if this is too long or irrelevant but.. My experience was that my doctor said 'we don't say things are either mental or physical anymore' but then said I should have a mental health assessment. I was grieving the death of my mother ( I cared for her) five months earlier. The mental health professional said we would never diagnose someone so close to a death, but I was basically fine. My doctor didn't think it was worth doing anything beyond a blood test. Another doctor at the practice said 'well when pain is for emotional reasons'I had pain in very specific areas. I referred myself to physio ( to get an a physical examination) and they got me a full spine MRI, which revealed damage, which may be a side issue besides fibro, or not. My doctor referred me to Rheumatology after a while, but was quite happy when I said the waiting time was over a year at the hospital. So I kept phoning them for a cancellation appointment. I asked my doctor after several months, if there was a local pain clinic I could go to, he lied to me and said ' not that I know of'. The physio said said , yes there is, and referred me. The doctor retired. Now the practice has a hands off policy and just let's me get on with it, unless I contact them. I never would have expected the treatment I got from my doctor. By the way, within ten minutes of seeing me ( I was lucky and got the actual consultant) the Rheumatologist diagnosed me, as she asked very pertinent questions and examined me. She also arranged various tests to make sure it wasn't something else. But after a good start, I got a copy of a letter to my doctor saying she wouldn't see me again. Still waiting on pain clinic, with a packet of pain pills thrust in my hands.

Dizzytwo profile image
DizzytwoModerator in reply to BlueTofu

Hi there, there is nothing wrong with a long post. What makes it more difficult for some I think,is when it one long line of text with no gaps.

Breaking up a long post in this way enables the reader in my case to takea break from the reading.

Then they can see where they left off reading and return to finish reading more easly.

I hope that made sense. If not I will blame it on the fibro 😂

Take care and I hope you have a pleasant day xx

Momo

So what You are telling me is I’m imagining the pain, the fatigue , the confusion, the pins and needles and all my other symptoms, right

Carlt profile image
Carlt in reply to Lucozade

I think that we sometimes become so frustrated with people who don't take our condition seriously we don't realise that we are being equally dismissive of folk with other health issues.

Mental illness is more than just "imagining" something. It is a very real, and often treatable, condition.

I don't know the origin of my fibromyalgia pains and, as yet, there is no physical explanation for it so I can quite accept that it could be psychological rather than physical, especially as the condition is often associated with traumatic events, illness or injury.

I believe it strongly that is brain and spinal cord ....

My mum had a saying that capped it all for me: closer to the brain the greater the pain blisters on feet don’t feel to bad longer to travel up the nerves get a lump removed on shoulder open wound oh my god the pain on the first dressing change I hit the roof nearly passed out day two for dressing change they gave me gas closer to the brain was the pain reality or fictional all to do with neurological pathways in the brain the are real they stop in our tracks with heat cold temperatures signal us of damage danger sensitive to taste smell they are what doctors can not understand at this point complexity of the brain how we feel our whole being complexities of human beings we are all mortal humans learning intelligence is small the complex human brain and sole vast never has a set of word been more apt to infinity and beyond!!!!

Such a close to home story, mine was in the armpit with tram lines. I was laughing it off when I came around after the op and got a right good telling off from head nurse. But I concur about the dressing change, no warning just shear pain and my brain fried. Def no gas or pain killers offered….Fibromyalgia and pain, I can manage that after years of practice.

Great feeds Guys, thanks for all the input, much appreciated, 🙂

With the greatest of respect, Fibromyalgia is all over my body, fatigue, hypersensitivity to touch, noise, light, heat associated with swelling at small to large joints. My brain (head) knows I’m in pain. The main issue I find difficult is managing the pain and the inability to get relief. Thankfully my practitioners have been supportive of my condition but I must recommend you read about the circadian rhythm. It’s very interesting and I firmly believe my issues started due to being incompatible with night shifts around 20 years ago. Worth a read ! Hope your future appointments are more productive and supportive for you. Janet 🙂

It’s a very poor way of putting it but the gp’s are sort of right. From what they understand so far fibromyalgia is not caused by any physical phenomena, eg it isn’t anything in your skin or bones, it is a result of our brains sending the wrong messages. Without our brains, which are in our heads, we wouldn’t have any fibromyalgia symptoms. This isn’t the same as saying ‘you are imagining this’, far from it, generally Doctors do understand that the pain we feel is as real as the pain we feel when we cut ourselves, stub our toes or have food poisoning. If we didn’t ever feel any pain we could end up bleeding to death or dying from poisoning.

It’s not wrong pain is in the mind when you injure yourself your nerves send signals through to your brain to let you know you have hurt yourself your brain sends these signals back to the injured area as pain It’s the same with FM accept there are so many different signals for the brain to deal with this causes other problems like fibrofog anxiety and depression as well as skin sensitivity headaches I could go on I hope this helps you understand better as it helped my children x

Long before being diagnosed with fibromyalgia, I used to visit a naturopath who was also an osteopath. He told everyone their pain was in their heads. Everyone took that the wrong way. I think he meant that the pain control unit is in our heads, which is a different thing from imagining you are in pain. He just didn't want to go into the details of how we feel pain, and part of him wanted to just keep the information to himself.

This does strike me as a somewhat inflammatory post. And I’m not convinced that it is necessarily the best use of a support group platform, as it can be an upsetting and argumentative discussion. But that is just my opinion and I may be misunderstanding the ultimate aim of this forum.

As far as I’m concerned, Fibromyalgia is a much misunderstood condition.

Looking just at the name, it basically means pain in the muscles and tissue. I think we can all agree that this is a very big part of the condition? Exhaustion is another factor in the condition and again, I’m sure we can attest to the fact that pain causes incredible amounts of fatigue; as does stress and anxiety etc.

It looks like early records date the origin of the condition (as in the condition being recognised) from the early 1800’s, when a physician acknowledged specific pain points. In the late 1800’s, a psychiatrist suggested the origin could be stress. So the very early days of the condition as a recognised entity combine the expertise of physical and mental health practitioners.

It still seems widely accepted that stress, whether mental or physical, (such as anxiety, depression, trauma, an accident, overwork etc…) can cause the condition. Not everyone with stress ends up with fibro, but considering this suggested causation still essentially seems to hold up, I would posit that everyone with fibro has experienced tremendous stress in some form and can therefore potentially trace their own trigger point(s).

Stress and mental health issues can be caused by, be the cause of, and exacerbate a myriad of physical health conditions.

At this stage, it has not been scientifically proven that one specific thing causes fibromyalgia. Nor that there are definitive symptoms - hence it being so difficult to diagnose.

There are many studies in progress to ascertain what the condition is - I believe one such study is looking into whether ME/CFS and/or fibromyalgia are potentially cellular and to see how much they are linked to one another. These and other studies into the condition(s) and the raising of awareness of the condition(s) are all very encouraging, as they may lead to some concrete answers and aid in breaking down the barriers to a wider understanding of invisible illnesses.

However, I think it may be detrimental to be talking in circles about our opinions, as there can’t be any ultimate resolution, here. 💙

read my latest post penelope, it may be a little clearer now?

Sorry, I’m not sure which post you mean. I still think the original post is worded in a somewhat inflammatory way. But as I said, I definitely think that fibro has its roots in stress of some form and with any kind of stress there is an element of mental health. Even a broken leg will make someone feel low, as they are in pain and/or aren’t as mobile.

Mental and physical health (whether in good or bad health) are part of being alive - having a body and a mind, so I think that all physical and mental conditions affect one another.

Until recently I was studying for a degree in special educational needs and disability- from my reading and lectures, I came to this conclusion. But it’s just an opinion formed while I read about scientific facts.

I think this could just go round and round 😅

When I’m in a fibro fog/have a migraine (which all feel permanent lately), I don’t really have the energy to keep up with a thread this long 🤣

I certainly hope my comments didn’t come across as calling this a waste of time, I just think (again, my opinion), that this can be a contentious subject and can cause more anxiety to some people 💙

I take it to mean that 'they' think it is a psychosomatic illness. ie real physical symptoms originating subconciously in the brain. Not so many of 'them' seem to think that anymore

desquinn profile image
desquinnPartner in reply to Gaballetto

Psychosomatic is now such a pejorative or loaded term that has very negative connotations. Heart disease is a psychosomatic condition where stress can kill you.

Irrespective of terms used and some are only permissible in certain conversations, there is a distinction between primary pain i.e. that without a obvious defined cause like a cut or break, and other types of pain such as acute. But this does not invalidate the pain or should not and we need better options for dealing with it.

Gaballetto profile image
Gaballetto in reply to desquinn

We do need better options, and thankfully, finally, more scientists and medical researchers are becoming interested in our condition. Advances don't always help the current generation that are suffering, but at least we know someone's taking an interest.

When I was diagnosed with FM 20 years ago, even my brother, who was an opthalmologist, and my sister-in-law, who was a radiographer, had never heard of the condition.

Now most medical professionals have at least heard of it, and some know a few things about it.

I am just thankful that I am not one of those women who, 150 years ago, had to just take to her bed unexplainedly when every flare came along. There are many, many more options available to us now than those poor ladies had, and more coming along regularly.

Look at it this way - each new generation of medical professionals cannot be taught by their seniors in the profession, about things that weren't known or understood. So each generation has to teach themselves about new stuff, and not all of them will have the time, energy, and will, to do that.

You gotta try to smile, not rage, through adversity, because rage only harms the rager.

(easy to say when you're not in a flare)

🙂

Gabby

KimiJay profile image
KimiJay in reply to Gaballetto

Hi Gabby. Interesting observation your last one about doctors in training who cannot benefit from the preceding generation. - My concern is that the pharmaceutical companies are the chief ones now 'prompting' what training they are given because 'fit-all-purpose drug regimes' have now replaced observational skills that family doctors (and canny cottage hospital nurses) used to provide as 'Lakehouse' mentioned. - The Pharma influence is partly by default perhaps, as one report I've read but can't remember now, stresses that there is now far too much medical knowledge to be imparted during a general medical training and there may not be any kind of policy that any government can put in place to address this. Meanwhile, we are still somehow all programmed from birth to expect a magic cure-all bullet. Or, now tend to think in terms of trial and error perhaps. Maybe we have come on since medieval times though when all sickness in the Western world was attributed to sin. - How may that translate today perhaps ... poisoning by the food industry, poisoning by pollution, noise, TV chat! - Evils of a rather nebulous kind. Perhaps our primitive, deep, sensible senses are right to cause us pain because we know it's more than a jungle. It's a demented world out there and we are still only an animal species. Yep - Agree with you. Keep smiling through where possible but maybe let off a 'bit' of steam occasionally. - A wonderful image was given to me a while back - you visualise a Celestial Garbage Truck/Refuse Lorry backing up so you mentally dump the flares and the gut boiling desire to express some invective about fibro in its gaping black hole and send it away. - Maybe this is a way of talking to our brains and telling it to take the pain away.

like this, Interesting philosophy or reality, I am a keen astronomer, hence my analytical mind, I am a bit off beat with my thoughts, I agree you need theory to lead the way in exploration of health just in the same way as our universe.

You forgot to mention that drugs companies and the medical profession have a common interest to profit from drugs, bit cynical maybe but also true. It is a bit like the phrase their is no profit in peace.

You are right on the button. I think I was a bit too mild about pharmaceuticals. I didn't want to alienate anyone or make them uncomfortable. I'll will just say that number one son calls Allopathic medicine, Mugglemedicine, and I'm afraid I agree. There is also much too much respect for testing and lab results. Number one son also read off the lies in most statistics over the past three years. As many science PHD students will know, you tend not to get the results you think and pressure from people wanting to make money out of your work - well, there must be a fair amount of creativity. - I am sure you recall the Ferengi quote if you ever followed Star Trek. 'War is good for business. Peace is good for business.' Sickness too is very profitable. - Hope you follow the ISS. That really is good for peace.

We've all seen the disaster that can occur when people seeking to make a profit (drug companies) are allowed to be the physician's main source of information about a condition and the best pharmaceuticals to treat it - the opiate debacle. Pharmaceutical company sponsorship of 'education' for medical practitioners is the norm but needs to be taken with a cynical eye and a large pinch of salt.

Unfortunately, they are the only ones with the resources to put on a big conference, or even go door-to-door selling to practices. Catch-22

I'm not saying that every individual within those companies is just out to make a profit, but it's very difficult for an outsider to see which ones are and which ones aren't.

desquinn profile image
desquinnPartner in reply to Gaballetto

Appreciate what you are saying but casting allopathic medicine or big pharma as evil or mainly bad or even very suspect is contributing to the lack of trust in those like vaccine creators, innovators and those that are making breakthroughs in medicine.

I can be just as cynical about the pill pushing supplement industry and functional quacks that exist in America and elsewhere that as was put above sell snake oil like the wild west. Except it is with advertising and misinformation of social media. "do not listen to those health professionals with years of experience and peer research...... listen to me with my magic sugar, salt and honey that will cure all your ills"

Bad behaviour is often rewarded and greed exists but eventually chickens do come home to roost often too late. When I see someone on social media or their chiropractors website saying their technique (insert phantasmagorical pseudo physics "evidence) that cures <Barry Scott Voice>not one, not two, not three but 27 different conditions </Barry Scott Voice> then colour me cynical :)

In my opinion people making their own choices is fine but trying to change what is proven practice like prescribing or treatments needs to be evidence based and be on good faith.

Gaballetto profile image
Gaballetto in reply to desquinn

You are quite right that some people can take what anyone says, positive or negative, and run with it to enhance their own agenda (like vaccine aversion/hesitancy), and so far, no-one has worked out how to put a stop to that.

However, I don't like that it is now not acceptable to say anything negative or even cautionary about big pharma for fear of it being taken as an excuse to mistrust all their products.

You cannot allow such fear to turn us all into quiet little lambs, accepting everything we are told by those with years of experience and training.

Most of the time they are right, and most of the time they have the patients' interest at heart, but you have to be aware that this is not always the case, especially when money and politics is a motivating factor to some.

If we don't express doubts, ever, then researchers have no reason to achieve absolute certainty that their products are safe and effective before releasing them to the market.

I do believe that it is the role of medical professionals to be cautiously cynical, and to arm themselves with the most up-to-date information, so they can stand between the public, who are desperate for a 'cure' and the drug companies, who are desperate to recoup money they spent on research and development. Sadly, allowing themselves to be sent for all-expenses-paid deep sea fishing trips and spa treatments by the drug companies is not the way to reassure us public that they are up to that job.

Sorry to all you other forum inhabitants that hate long-winded posts.

desquinn profile image
desquinnPartner in reply to Gaballetto

It just seems that "big pharma" is more of a caricature now and used as a stick by other similar special interest groups with their own agenda to push. I do not trust them and have a critical eye with studies. The fact that we do not have licensed / marketing authorisation for a fibro drug in the UK is one of the reasons that awareness is slower than it could be.

Big Pharma's ABPI code prevents lots of activities that would potentially benefit our community but that is the right course of action until we have the correct evidence level. There are checks and balances in this area like NICE / NHS etc but we should always be vigilant for those that are tying to play fast and loose.

JayCeon profile image
JayCeon in reply to Gaballetto

Catch-22? Yes, but I think you'll agree that's life and we're all only human. They are in it for the money and get their money, because most people want / need it easy and the system works effectively that way. Docs or patients alone couldn't / can't do better research on the scale desired, otherwise they would do. And doing it on a big scale keeps the costs in check more, altho it causes quite some problems in the fine tuning. And the majority wants health costs in check.

Opiates have become a "debacle" because first they were a "good first try" for everyone - people in severe pain, docs trying to help, pharmacy trying to find things that work so they can make money with it, then clever people realizing it's gone too far and now trying to steer it to a balance, getting a lot of stick for it. I can't actually at all see why the drug companies are supposed to be more at fault than docs. I learnt as a kid that opiates are a problem, that many meds can be abused.

That's how people are, how they do it, whether the politics of environment or of health or whatever. The only way out of the politics of it is not taking part by making my own cleaner decisions in my life on my own, which sometimes feels like a drop in the ocean. The people around my are lovely and clever. They see me suffer from meds (except from statins by the way!) and then understand why I don't take them (statins not any more either, esp. cause of recent research). But all of them take meds quickly. And it works for them. It's not the drug companies. Everyone's in on it.

O' dear statins, there goes another can of worms, have a look at the AF section on Health Unlock it is an eyeopener!!

No worry, dtNHSw, as I said I've been doing tons of research and watching myself closely, both more than anyone else, as you can see in my other post healthunlocked.com/fibromya....

No, implications to you personally, I just found it enlightening almost staggering to read.

desquinn profile image
desquinnPartner in reply to JayCeon

I wonder if some of the misconceptions over medication eg statins are because some people do not know that bell curves / normal distribution applies to so many things. Just as an example consider this image below which is a standard bell curve and for most natural things you will have a distribution of about 70% under the main peak. So lets say for statins most people of the millions that have used them of the 5 types in use in the UK have found them to be of benefit.

But as you get outside of the normal distribution you may have unintended effects and often swapping to one of the other 5 will sort you out but for some they can cause muscle pain and other ill effects. Coming off them for a short time identifies this and then swap or try other options.

If you are in the 70% you think statins are great just doing their job in the background and keeping you ticking along. But if you are in the 30% then you start to not like statins as they are causing you problems or harm even. But with large populations we happy as a society when the majority are ticking along and then we can spend more time on the minority and their issues. There will always be a "30%" that are not doing as well or have issues and for them their issue may move them to think that giving tis to the 70% is ill advised. Sometimes taking a step back can help.

Good source of info on statins: heartuk.org.uk/getting-trea...

standard bell curve
JayCeon profile image
JayCeon in reply to desquinn

I fully agree - popping a pill (or actually any treatment) is supposed to be all white, never grey or black, patients tend to think. But our bodies are not simple black or white (not even the skin colour ;-P). Docs, researchers and the industry know that, but it's not easy to communicate to people, they want life to be simpler.

desquinn profile image
desquinnPartner in reply to JayCeon

yeah things like codeine simply does not work on a percentage of the population was an eye opener to me. Some peoples bodies just do not react. So if we could detect that drug A in John will work, in Bob will not, and in Sue will cause side effects that are not worth it then our opinion of the drugs would improve significantly.

For some drugs in the UK we will get there.

JayCeon profile image
JayCeon in reply to desquinn

Pharmacogenetic testing you mean? I'm hoping not just in the UK! ;-D

But I'm fearing you may be right about the "some" drugs....

desquinn profile image
desquinnPartner in reply to JayCeon

my word choice was specific :) as I know it is in the US already and coming to the UK for maybe 400 drugs IIRC. Suspect it will go all over.

The neuro imaging prediction if that develops could help in the drug development process potentially.

I have battled with our free health service for too long, and wish for the life of me I had private health, only because of me paying recently, have I now some idea of what's going on, FOR ME I now cannot preach enough, if you want some help it is going to cost you. The benefit is you may start to get some relief. Not guaranteed I know but certainly worth the chance.

Yep, that's a basic guaranteed minimum, which is a political decision (not that I agree with that decision, but I do agree with as much democracy as possible, even tho the "majority" is often not "right"). Everyone's "welcome" to spend more money on their health or whatever is most important to them - cars, holidays, beer or whatever. I now have to spend a lot on health and on not much else (none of those), that's my priority....

yes, sadly I agree, lesson learnt for us now😒never envisaged the old free service becoming so dire.

It is kind of strange really but this forum does at least make you realise we are not alone, sad as it is.

Luckily here in Germany and in certain jobs I've got quite good semi-private insurances. But even here I have to pay for my supps myself and have sometimes had to argue about long term physio or my Gestalt psychotherapy, the first with certain success, the second without...

Hang on a sec - I've been paying for this 'free' health service all my working life. Who else could get away with making you pay more for something you have already paid for?

JayCeon profile image
JayCeon in reply to Gaballetto

Do you see the amount your health bills? I do, they are pretty expensive, even tho I do everything to keep outside of hospitals.

You're not "paying", it's an insurance and works like all insurances plus like taxes, social security etc., so it's averaged, basically non-profit, but partly profit *. Thankfully some don't need it or use it much, whilst we need quite a bit above average.

* BTW - Just imagine if pharmaceutical companies went public, non-profit, state-steered.... - not sure if that'd be an improvement, or what would.

JayCeon profile image
JayCeon in reply to KimiJay

Hmm, are you sure the influence of pharmaceutical companies is new? I closely accompanied / helped someone in the 80s studying medicine. First came the science part: biology, biochemistry etc., then anatomy micro and macro, loads of basics, and when at last it came to the treatment, helping people with medicine and we looked and learnt the text books on pharmacy it was like reading tons of package inserts, absolutely no difference, and very obviously 90% fed by information from the pharmaceutical industry. I don't know when their influence was less, maybe in the 60s? And when I compare the docs on average here in Germany now to the ones I consulted in the 70s, 80s, 90, I'd say they have changed for the better, they listen better, they don't laugh any more, they aren't as know-it-all. That doesn't seem to be the case in the UK, but let's hope it's not a case of "things aren't like they used to be" but of "a momentary lapse of reason", and it'll get better as medicine progresses and perhaps more money is put into the health system. There are brilliant studies around admonishing docs to listen to their patients more closely, since it is proven by studies that their diagnostic abilities leave a lot to be desired....

KimiJay profile image
KimiJay in reply to JayCeon

Yep, it's been around for a long time. Nineteen o something, Rockefeller's Standard Oil took over Pharmaceuticals and started dictating to Doctor colleges how they should be taught, so the trend comes from over the pond. (There was always snake oil just like in the Cowboy films). - You seem to have had some helpful insights into the wrong kind of medicine. I rather feel that Germany does everything better, and possibly France too as number two son found out when he passed out on a train. His experience and his girlfriend's was very positive. I feel that 'surgery' (in some hospitals) often stands apart too because it is about more than drugs and they have proper teams. Thankfully, a new doctor in our village has said he is quite happy that my husband now abandons his low dose statin for a trial run. So relieved! Hubs has always been a constant skinnyman and his cholesterol and ldl were always fine to begin with. He was just scared into taking them because he has angina - mildly. He now trusts my chiropractor with his chest pains. - Bring on change but lets get back to herbals too! And bring over many, many more foreign trained doctors.

Gaballetto profile image
Gaballetto in reply to KimiJay

The statin trend is a perfect example of doctors getting their information from someone with a vested interest in selling a drug. I know a few previously healthy friends who have suffered side effects from them, but have persisted in taking drugs that make them feel sicker than they did before because their doctor says 'the side effects are to be expected in some people, so don't worry, just keep taking them'. How can any doctor think it's right to tell a patient to keep taking a drug that changes their life for the worse??

In fact, my husband was told by a nurse practitioner that he should start statins because his cholesterol was 'almost high' (ie in the normal range but nearer the upper 'limit' of normal). The NP was well brainwashed by the statin-selling drug company and not properly educated about what the 'normal range' meant. It means that some normal, healthy people will have a cholesterol level that for them will always be near that upper level, not that it is going up and about to become abnormally high.

KimiJay profile image
KimiJay in reply to Gaballetto

It's sad that people fall for it. Years ago my cholesterol was really high, over 10 whatever, so I tried a low dose statin and gave it up almost immediately because of headaches! I am still here. It's only housework that is killing me! - I suppose the money doctors get paid by conpanies for prescribing it somehow transcends conscience. - Mispelt word above, but actually more correct I thought, so I'm leaving it in!

JayCeon profile image
JayCeon in reply to Gaballetto

Ah, Gabby, here you are saying it's the docs, but brainwashed by the drug companies. But isn't it also the patients believing them? I've taken statins, some of the few meds that I did tolerate, they didn't give me additional pains. And they really did decrease my lipids significantly. And the understanding was that that reduced cardiovascular disease. Now doing my research I'm seeing that's starting to crumble, and the studies on JAMA are repeatedly stressing to prescribe less statins for a certain set of people. After stopping the statins and only taking lipid-lowering supps, a lot of them, some of my lipids have rocketed again, whilst a special genetic one is also staying high, altho according to research about statins and supps that should be coming down. Which is a bit scary: Do I really know how it's going to turn out for me? Luckily my cardio is supporting me by checking me very regularly and says it's all good. Which is costing my insurance a lot more money than if I took the statins...

Gaballetto profile image
Gaballetto in reply to JayCeon

All I was saying was that if drugs are going to be prescribed then the prescriber must understand when it is and isn't indicated because EVERY medication we put in our body has some miniscule risk of adverse effect.

There will always be some people for whom that risk is worth taking because the alternative is worse, but some prescribers seem to just be looking for any excuse to prescribe.

It seems to me that some prescribers feel they have to prescribe something, anything, and of course that medicine that that nice drug rep told me about last week sounds 'just the ticket'.

I object to a statin, which has known side effects in some/many people, being prescribed to someone who has a NORMAL cholesterol just because that person's normal level is nearer the top of the arbitrarily determined range of cholesterol levels that NORMAL people can have.

We need to be able to trust that doctors are prescribing drugs for the right reasons. Trouble is, there is no test of moral fibre you have to pass to get into medical school, only an academic one.

JayCeon profile image
JayCeon in reply to Gaballetto

1000s of conditions, symptoms, meds & other treatments.... Perhaps we need to pay ten times as much for ten times as many docs.... ;-P Most docs I know work very hard, even those that aren't too clever. Now there's a tendency here for them to go part-time in bigger offices, maybe that's nothing new in the UK. But these then aren't as passionate, it's more a job for them, rather than a profession. I don't know if that makes them worse as docs, but it does feel like it to me.

Prescribers feel they have to prescribe something because a majority of patients expect that, or have done so, praps that's changing, then I think they'll change. That's what I experience here and what my docs tell me, that certain types of people put pressure on to prescribe anything, otherwise it wasn't worth going to do the doc.

Since heart attacks and strokes are not at all funny, some of the most important things everyone wants to avoid, I don't think it's negligent, just a different priority. May be cholesterol and statins will turn out to be wrong, but as it is it seems 'right'.

Gaballetto profile image
Gaballetto in reply to JayCeon

I think the more chilled out, less tired a GP is the more they feel able to approach their job/profession with enthusiasm. I do not object to them working part-time, except that it makes it hard to see the same one every time, so you cannot really build any kind of rapport.

I like my doctor, airline pilot, vet, etc etc to be fresh and alert, and if the job is very stressful then that is only really possible with plenty of days off

No not entirely. read the latest post from banana and my reply.

Where can I find that post? I have looked through all the recent posts I can find

JayCeon profile image
JayCeon in reply to Gaballetto

Last post of Bananas5 (click on Members Bananas5): healthunlocked.com/fibromya...

This is the banana5 post, for me this makes a lot of sense, my first introductory to pain management was interesting to me, in particular how we perceive pain, my personal feeling is the more one' focus on pain the more you feel pain, type of psychosomatic I know,

For me when I started with my GP from the start I would say to her I am not sure in my mental health is driving my physical symptoms or my physical symptoms are driving me mad, well I now know it is my mental health driving the pain.

Neuroplasticity

What is Pain Reprocessing Therapy?

Pain Reprocessing Therapy (PRT) is a new diagnosis and treatment paradigm that helps patients unlearn chronic pain by retraining their brains. A primary method is to work directly with the fear of pain, which is often a primary driver of symptoms.

Studies have shown that about 85% of people with chronic back pain do not have structural damage that explains their pain. And many other symptoms like migraines, digestive disorders, abdominal pain, and fibromyalgia are also not characterized by structural or tissue damage. PRT helps people retrain their nervous systems to unlearn neuroplastic pain pathways that are creating severe, debilitating, and treatment-resistant pain syndromes

The doctor I used to have more or less said there was no such thing as fibromyalgia, and said it was just symptoms of something else. I was never taken seriously. One day I had to have an emergency appointment because my muscles in my upper back had gone into such tight spasms that I could barely breath, and couldn’t even dress myself. It took me ages to get to the car with my husbands help. The emergency doctor was running late, and another doctor happened to walk past and could see how much pain I was in (I was standing up against a wall, because if I sat down it would take too long to get up when I was called). She said she would see me instead of the emergency doctor if I wanted and she got me medication and did blood test etc.

If it wasn’t for her, I would never have been diagnosed with fibromyalgia, she got me appointments at the hospital which led to the official diagnosis, and I managed to get the pain relief I needed at the time. I had to have the medication I was taking for something else tweaked, in order to get other medication.

Don’t let anyone tell you it’s all in your head, it’s not, it’s a real condition as many on here will testify.

JayCeon profile image
JayCeon in reply to Ukulelelady1

Actually, if a doc says the symptoms are just something else, that shouldn't be a problem and sounds as if they are taking us seriously - they just need to prove it. It happened to me, a doc in a centre for rare diseases suggested it might be Sjögren's and Hashimoto's. But both were checked and nothing came of it. Leaving me with fibromyalgia....But in your case it sounds as if that wasn't done properly, due to not taking it seriously.

How nice of that other doc taking you on - an angel in your distress!

Thank for your reply, It is great to hear, it is kind of reaffirming for me to hear your thoughts.

I for one do believe fibromyalgia syndrome is real, it is a stinker if I can be honest. And I pray the day when we can all look back, to say what was that all about!

But, that's not the case, - for me I kind have reached the eureka moment with understanding me and my symptoms and understanding of my condition and please this is only my view, I in no way want to dismiss other theories from you or anyone else, it is very refreshing to hear all the view points - after all we all have our theories, we have no cure!

So, for me, and the comment "Fibromyalgia is in your head" is not to say it is a fairy tale experience no, not at all, it is not some visionary thought mixed up in your head, an illusion, no not at all.

But what I have come to understand is mental health and PAIN. and for me I almost feel like Jocelyn Bell Burnell (i wish) it is so clear, the connection between my cognitive state, is the bulk of my symptoms.

Which ever way we look at this condition, the evidence suggests it is chemicals, neurotransmitters, and central nervous system, so for me it is definitely something going on in my head.

I take your point, but the first doctor didn’t “believe in” fibromyalgia at all. The second doctor was obviously in the right place at the right time, as I’d already had some similar episodes like the one I’d had that day, but this was extreme. She also took me off one of my blood pressure tablets as it was making my potassium levels low, that helped such a lot. I was temporarily given diazepam to help free the muscles, and was also given Baclofen. It’s very scary not being able to breathe. The other doctor was very helpful indeed, and I’ve switched doctors and am on her patient list now.

JayCeon profile image
JayCeon in reply to Ukulelelady1

I think you're replying to me: Great that you can keep on with the 2nd one! - Often not possible with clinic docs here. So you mean the 1st one said if they can find anything, then there is nothing, I spose... And not that they tested you for everything on earth (and died crying because they couldn't find what's causing it... 🙄).

Ukulelelady1 profile image
Ukulelelady1 in reply to JayCeon

Yes, I've stayed on the second doctor's books since then, as every time she increased one of my tablets, the first doctor changed my prescription back (they are at the same practice), I had no end of trouble with that, so I rang up and asked the doctor directly if I could go on her list, because I was having this hassle every month, and she kindly obliged. I'm pleased that she recognises the fact that fibromyalgia exists and treats patients with it. The first doctor just rolled her eyes skyward when I first approached her and told her I thought I had it, up until that point, I had got on fairly well with her, but when she said what she did, she went down in my estimation.

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