Forum > Health and Disability

Fibromyalgia - autoimmune condition?

(1/3) > >>


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:
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.

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:
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 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!


[0] Message Index

[#] Next page

Go to full version