Author Topic: Fibromyalgia - autoimmune condition?  (Read 466 times)

ditchdwellers

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Fibromyalgia - autoimmune condition?
« on: 02 Jul 2021 04:58PM »
https://www.theguardian.com/society/2021/jul/01/fibromyalgia-may-be-a-condition-of-the-immune-system-not-the-brain-study

Research published in the Guardian yesterday reports that research has revealed that fibromyalgia may actually be an autoimmune condition. Which I personally feel is a huge leap forward and a validation for myself and all my fellow fibromyalgia compatriots out there, who have been disregarded and classed as having a junk diagnosis for decades.  :thumbsup:

I can't wait to see how this develops and a treatment developed in the future. I'll happily be a guinea pig  :biggrin:

Sunny Clouds

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Re: Fibromyalgia - autoimmune condition?
« Reply #1 on: 02 Jul 2021 05:17PM »
I think the big hope with a lot of things is long covid, because it's causing a lot of people to have a whole range of symptoms previously attributed to people seen variously as faking it, having psychosomatic disorders, imagining it etc.

That being said, some of this sort of thing goes round in circles.  I want to say something about inflammation and mental health problems for comparison.

Years ago, some researchers spotted a link between schizophrenia and growing up in contact with cats.  No, seriously.  Further research suggested that this wasn't just contact with cats, it was contact with cat litter in flats and with cat mess in sandpits and play areas.  That maps onto the social demographics more likely to develop schizophrenia, e.g. immigrant (not particular ethnic demographic), poor, otherwise socially excluded etc.

But it was dismissed as twaddle. After all, the drug companies wanted to push major tranquillisers as antipsychotics, and relatives, who'd set up the National Schizophrenia Fellowship (now Rethink), seen often as a DPO, but not set up as one, were happy to plug the notion that schizophrenia and other conditions involving psychosis (i.e. believing things your psychiatrist doesn't) was a dopamine problemnot connected with other conditions and needing drugs.  This acted as a fightback against the schizophrenogenic parent concept. 

Ah, but drug companies are running out of  variations on a range of existing psychotropic pills such as antipsychotics, mood-stabilisers and antidepressants.  Oh gosh, guess what, they've now apparently suddenly discovered that the immune system might be relevant to mental illness.  How coincidental they've got a range of anti-inflammatory pills they can sell.

That does not mean that I think the immune system isn't responsible for a hell of a lot more than it was previously given credit for, but rather that I'm concerned that if the drug companies run out of new medications with anti-inflammatory properties, they'll push us away from this understanding, which I believe is very significant.

Ironically, mood-stabilisers that I've been on for years, of the sort that are also used for epilepsy, have anti-inflammatory properties, to the extent that one of them is being used for some covid-19 cases to damp down the excessive immune response, the cytokine storm.

On a lighter note about those pills - I reduced the dose of one in spring 2020 and boy did the hay fever rear its ugly head!  That's for someone who, on a much higher dose of that and my other medication with a very similar mechanism of action, tested as immunodeficient in 2015.

I think that whilst the relationship between lots of different conditions in the body and mind are affected by the body's immune response, we need to push hard for the research into long covid to be extended as far as possible, as widely as possible, before people with it find themselves on the 'dismissed as just skivers or imagining it' scrapheap.

We have a lot to benefit from seizing the moment, for a whole range of chronic conditions.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Fiz

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Re: Fibromyalgia - autoimmune condition?
« Reply #2 on: 03 Jul 2021 05:25PM »
It just shows what a stigma there is around fibro/CFS that people would feel reassured that there is a physical cause meaning there's an assumption without that evidence "that it's all in the head" and what an uncomfortable feeling that is. The symptoms are what's important and my hope is that effective treatment can be found mostly. 

But as someone whose depression has returned with a vengeance since stopping steroids, I totally identify with the desire for the depression to have a physical cause, such as low cortisol, rather than "just be all in my head" because the latter is a million times worse and yet the symptoms are the same so that shouldn't be the case. It's partly stigma but partly, if there's a cause, they might be able to fix it. The treatment for immunosuppressive disorders are limited currently though and if you have one, are far more likely to get others.

Sunny Clouds

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Re: Fibromyalgia - autoimmune condition?
« Reply #3 on: 03 Jul 2021 07:57PM »
Extending the issue of the negative connotations of 'all in the head', personally, I buy into the idea that in biochemical terms and in the overlapping nervous system terms, mind and body are linked.

I'm also a multi-cause person.  Medicine isn't usually like that. 

So I personally would have no difficulty whatsoever with the notion that a condition, whether physical or mental, could be caused by both physical and mental origins in different people, whilst still being genuine and disabling.

At it's simplest, let's say you have a cause for sudden great fear.  Your body will react and your mind will react.  Why mightn't it be the case that you could have both physical and mental outcomes or just one or the other?

But let's suppose two people face great fear - one's a 'real' threat and one's imagined.  The body and/or mind could react the same way to either.

And where a condition can be inherited, it doesn't necessarily mean that all cases are, and thanks to epigenetics, you can have two people with the same inherited gene and one develops a condition and the other doesn't.  That doesn't make the condition any less real.

But none of this suits those that want to belittle or disbelieve others, and it's a pain in the wotsit for doctors working in a system that insists they put people in tidy boxes and follow 'pathways' based around who's got a contract for what etc.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

ditchdwellers

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Re: Fibromyalgia - autoimmune condition?
« Reply #4 on: 04 Jul 2021 12:53PM »
I hope I haven't come across as dismissing mental health issues by welcoming the news that the origins of fibro may be autoimmune. My hope is that this opens the door to effective treatment, and not based on groundless ideas like graduated exercise. 
The body should be treated as a whole, and I'm only too aware that my emotional and mental wellbeing affect my pain levels and the fatigue I experience. Medication is only one part of my toolkit to keep me functional. Other techniques such as pain management strategies, socialising whether online or in person, sitting in the garden,  all these things help keep me smiling and feeling a bit better. 

One area of developing research that fascinates me, is the role of gut flora on the health of the brain, nervous system, and other organs and bodily functions. I heard a programme on Radio 4 a couple of years ago called something like the Second Genome, and it talked about the how gut flora may influence virtually every function in the body. Studies showed that people lacking certain gut bacteria were more likely to have certain illnesses and that faecal transplants could reverse the illness. I think the potential for this sort of research is extraordinary, as it's thought that the majority of the population in the UK do not have a diverse gut bacteria level and this could be affecting overall health by a much greater level than ever imagined. 

Fiz and Sunny, you both make very interesting and valid points, as usual!

Sunny Clouds

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Re: Fibromyalgia - autoimmune condition?
« Reply #5 on: 04 Jul 2021 01:06PM »
Quote
I hope I haven't come across as dismissing mental health issues by welcoming the news that the origins of fibro may be autoimmune.
That wasn't how it came across and I'm sorry if my reply could have given the impression I took it that way.


My reference to mental stuff was simply to point out the overlaps, including the inadequately explored and treated issues relating to immune system, inflammation, post-disease damage etc., and also how it's very easy to dismiss something as 'not real' if there's thought to be a mental element, which doesn't just negatively affect people whose disorders are primarily mental in their nature, but also those whose disorders are primarily physical in their nature.

My views are strongly influenced by my belief that I think that often mental versus physical is a false dichotomy and lots of people suffer from it.  I'd hate to have fibro, not just for the symptoms, but also for the attitudes towards it.

Analogy.  I was first diagnosed with manic depression in the early seventies, but in the early '00s, I was twice briefly provisionally diagnosed as having borderline personality disorder.  I noticed a marked change in attitude towards the same symptoms.  I have had friends over the years with BPD.  The way they are treated is, in my opinion, all too often utterly disgusting.

So how your condition is seen, the social and professional attitudes towards it, make a massive difference and it bugs me.

Would you forgive another analogy?  I'll make a fresh post to 'chunk' my posts...
« Last Edit: 04 Jul 2021 01:16PM by Sunny Clouds »
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Sunny Clouds

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Re: Fibromyalgia - autoimmune condition?
« Reply #6 on: 04 Jul 2021 01:14PM »
Another analogy (yes, another mental one, but about the need to separate judgement/attitude from treatment).

There's a bloke I know who sometimes pops up online in a panic.  He says some people he refers to are threatening to kill him.  My response is the sort I've given to various people.

"You and have different views on what's happening but it makes no difference.  I believe your mind is playing tricks, based on other sorts of genuine stressors in your life, and if I'm right, what's needed is something to relieve your distress, not only for the sake of your mental wellbeing, but to prevent you having a heart attack or stroke or something.  You find your usual pills, what's described as an antipsychotic but which I personally believe to be simply a major tranquilliser works for you, so why not take some?

"Of course, I could be completely wrong, and maybe they are threatening to murder you.  But if they are, they've been making these threats for years and so are unlikely to do it, but rather are just trying to intimidate you, in which case the real threat of harm is the same as if they weren't real, which in the past you've tackled the same way."

I've checked with him when he's feeling ok and he's happy with this.

My point is that it's all too easy for people to focus more on whether something's 'real' or, depending on the condition, 'imaginary', 'madness', 'laziness', 'timewasting' or whatever, instead of helping it.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Sunny Clouds

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Re: Fibromyalgia - autoimmune condition?
« Reply #7 on: 04 Jul 2021 01:24PM »
Quote
One area of developing research that fascinates me, is the role of gut flora on the health of the brain, nervous system, and other organs and bodily functions.
Yes, underrated aspect of our health, I believe.


Cynical hat on again - given that some of the research into this was pre-war (no, seriously,  partly relating to obesity, but not only that), I think the lack of progress in it has been at least in part due to the fact that pushing this explanation has no political advantage, and has no financial advantage for food and drug producers.

Maybe more rebellion?  I confess my diet is utter rubbish.  I've tried again and again to improve it and am in the midst of trying again.  Who knows what if any help you'll get with your fibro, but you've just given me an extra prompt to try harder myself with healthy eating.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

ditchdwellers

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Re: Fibromyalgia - autoimmune condition?
« Reply #8 on: 04 Jul 2021 02:01PM »
I like the analogies Sunny. 

I think that healthy eating is only a small part of gut health. Overuse of antibiotics and medications definitely play a role in it and I have recently tried to combat it by introducing fermented water into my diet. I'm under investigation for GI problems at the moment and still waiting to see a gastroenterologist, and cannot tolerate fermented foods, however fermented water is fine. I find it very tasty with the added fruits. It's very expensive though. You can make your own apparently but my fatigue and sleepiness prevent me from being able to do anything like this. It's well worth checking out if sauerkraut and it's ilk are not to your liking!

Sunny Clouds

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Re: Fibromyalgia - autoimmune condition?
« Reply #9 on: 04 Jul 2021 03:02PM »
I used to eat sauerkraut but didn't quite take to it.  On the other hand, it's not that I don't like anything vinegary, so maybe time to try again.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Fiz

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Re: Fibromyalgia - autoimmune condition?
« Reply #10 on: 06 Jul 2021 06:44AM »
I'm joining the growing number of people who are rejecting the "mental illness" model in favour of what's happened to you rather than what's wrong with you. I reject the word disorder in any terminology for myself personally with regard to emotional struggles so will say that I have experienced Complex trauma but that's it. It's an unproven theory that there are chemicals lacking in the brain as there's no way of testing levels but pharma is a multibillion dollar industry so will sell that story. I'm not saying that there isn't a place for Psych drugs but for most people I think they do more harm than good. 

Drop the Disorder is a good group on Facebook and they have links to Mad in the UK and Mad in America which are anti the illness stance. What is needed is more therapies that explore trauma or painful life experiences, more community support for people who have experienced them. If we invested in that we could save billions from pharma and inpatient hospital stays. 

Dr Clare Bailey on Instagram is well worth a follow if you're interested in your microbiome and gut flora. She demonstrates many healthy recipes and explains how ingredients help our microbiome. She's a GP. She also answers most comments and answers questions! She's lovely. I would use more of her recipes but there is only one of me and sometimes they are inpractical for just one person.

Sunny Clouds

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Re: Fibromyalgia - autoimmune condition?
« Reply #11 on: 14 Jul 2021 07:55PM »
Yes, Mad in the UK and Mad in America are good sources I turn to, and I'm with you in loathing the term 'disorder'.

I personally don't think it should matter whether you've got a condition because of your genes, because of your life experiences, because of infection or because of whatever else in terms of how much respect and decent treatment you get.

I dislike the way mental conditions are put in boxes with the classic thing "You've got Wossisname disorder"  "How do you know I've got Wossisname disorder?" "Because you've got five out of the eight symptoms people with Wossisname disorder have" "What's Wossisname disorder?"  "It's what people with those symptoms have."

But pure labels then get expanded into nonsense.

I don't mind the notion of illness in relation to mental conditions if it's treated in the same way as many other illnesses.  Someone comes into contact with mentally nasty things/happenings and someone else comes into contact with physically nasty things/happenings - why's it the case that if the way a person's mind reacts is labelled an illness it all too often gets less kindness than if the way a person's body reacts?

Well, it's the 'all in the mind' thing which overlaps with notions like imagining it, faking it etc.  And that's an attitude that also affects people with some physical conditions.  Never mind the physical symptoms they have to suffer, I'd hate to have to put up with the attitudes of so many professionals, politicians, administrators etc. towards a diagnosis like ME.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)