Fibromyalgia: 'Like red hot lava radiating through my body'

[TiredSam]

Fibromyalgia is a common, little-understood condition that is seven times more likely to affect women than men.

It is characterised by widespread pain and fatigue and can be difficult to diagnose.

This week, Kirsty Young announced she is taking time off Desert Islands Discs because of the condition.

Journalist Lucy Hancock, who also has it, attends a gentle movement class for sufferers to hear about what it's like to live in chronic pain with such an unpredictable illness.

7-minute video on the BBC website today:

https://www.bbc.co.uk/news/av/stori...a-like-red-hot-lava-radiating-through-my-body

 

[arewenearlythereyet]

Wow...it’s almost as if there is a BPS proponent directing this video.....mindfulness ...toolkit in the brain....new (unsubstantiated) pathways in the brain, keep moving otherwise you will cease up, medically unexplained.

I feel sorry for Kirsty Young if this is the bs her colleagues around her are in to.

 

[Trish]

The doctor started OK, explaining that there are different pathways activated in the brain in FM. But her interpretation of this sounded horribly unscientific - she used the phrase 'all in your head' and implied the sufferer can do things to change it, without saying there was any scientific evidence for that statement.

If sufferers find mindfulness or whatever helps them get through the day, good luck to them, but by juxtaposing that with the doctor implying you can change the pathways in the brain was pretty awful - back to the old it's up to you to heal yourself. Yet the person using mindfulness didn't say it made the pain better, just made coping with it a bit easier.

Also early in the program someone said FM 'makes your body hypersensitive to pain'. I don't understand this. Has it been measured?

 

[adambeyoncelowe]

The doctor started OK, explaining that there are different pathways activated in the brain in FM. But her interpretation of this sounded horribly unscientific - she used the phrase 'all in your head' and implied the sufferer can do things to change it, without saying there was any scientific evidence for that statement.

If sufferers find mindfulness or whatever helps them get through the day, good luck to them, but by juxtaposing that with the doctor implying you can change the pathways in the brain was pretty awful - back to the old it's up to you to heal yourself. Yet the person using mindfulness didn't say it made the pain better, just made coping with it a bit easier.

Also early in the program someone said FM 'makes your body hypersensitive to pain'. I don't understand this. Has it been measured?

I thought that too. It started off okay, but then devolved.

 

[shak8]

I thought that too. It started off okay, but then devolved.

who is the target audience of this little broadcast? It features a dancer who got fibro. OK, it is basically an illustration of what fibro feels like and the other crap is just thrown in, a sort of junk-pile effect. It does not give helpful advice (other than gentle movement) to sufferers, but it may make them feel less alone.

Yeah, you guys' criticisms are spot on. (I have fibro.) I guess the mind over matter chatter is obligatory these days, for ratings. That bit is about the (illusion) of having some self-control over the fibro symptoms.

But I would term all the mindfulness/acceptance/gentle movement ----it all amounts to the adaptation that the sufferer learns and does in order to carve out some life with meaning (which is less pain, whenever possible). And that adaptation takes years and years because of the lack of compassionate treatment and respect. Doesn't help that fibro affects women 7x more frequently than men.

I think the idea of pacing, of drastically simplifying one's life of saying no to so much---all of this is ultra important, but one learns it the hard way, alas, as one learns that he/she is no longer normal, and won't be.

I don't think the theory of "abnormal response to pain from joints, muscles" has been proven. It just seems self-evident, to me.

OK, this video seems to have been conceived without an outline. It meanders here and there. Worthless except for the sensory nerves in pain colors and the descriptions of the sufferers.

 

[shak8]

The doctor started OK, explaining that there are different pathways activated in the brain in FM. But her interpretation of this sounded horribly unscientific - she used the phrase 'all in your head' and implied the sufferer can do things to change it, without saying there was any scientific evidence for that statement.

If sufferers find mindfulness or whatever helps them get through the day, good luck to them, but by juxtaposing that with the doctor implying you can change the pathways in the brain was pretty awful - back to the old it's up to you to heal yourself. Yet the person using mindfulness didn't say it made the pain better, just made coping with it a bit easier.

Also early in the program someone said FM 'makes your body hypersensitive to pain'. I don't understand this. Has it been measured?

 

[shak8]

The old adage about fibro that it is "all in your head," meaning a brain disorder, does not encompass the newer research about small nerve fiber abnormalities in fibro, nerves in the hand, for instance. The initial trigger site is not known, nor the etiology nor the progression.

 

[adambeyoncelowe]

The old adage about fibro that it is "all in your head," meaning a brain disorder, does not encompass the newer research about small nerve fiber abnormalities in fibro, nerves in the hand, for instance. The initial trigger site is not known, nor the etiology nor the progression.

And 'all in the head' usually means 'psychiatric' not 'brain disorder', but I get your meaning.

 

[shak8]

And 'all in the head' usually means 'psychiatric' not 'brain disorder', but I get your meaning.

I'm sure all of us are sensitized greatly by the phrase: all in your head. I can't tell you how many times I've heard researchers of fibro say: haha, it's really all in your head because it is a brain disorder, not a somatic-functional psychiatric disorder, but something amiss in the way that sensory info is processed.

I know, I know, it's a heartless, cold "haha" by researchers. I would never encourage any of them to use such terminology. Frightfully misleading and not compassionate AT ALL.

Being a former member of the health professions world, I am still making excuses for them, ahem.

 

[Sly Saint]

GMB (Good Morning Britain tv show) discussing Fibromyalgia (31.8.18) with DR Ellie Cannon due to the news radio host Kirsty Young would be stepping down from the beloved BBC Radio 4 programme Desert Island Discs.



mentions comparison with ME

 

[ladycatlover]

GMB discussing Fibromyalgia (31.8.18) with DR Ellie Cannon due to the news radio host Kirsty Young would be stepping down from the beloved BBC Radio 4 programme Desert Island Discs.



mentions comparison with ME

Oh dear. Yes it's like ME as we don't have a test. I just love how the doctor says how hard it must be for someone like Kirsty who is "so busy and very active"! Yeah, sure, the rest of us plebbie ordinary people just piddled around in our so-easy lives before we got ill (whether from Fibro or ME), after all we're not famous so obviously not important.

Then female interviewer asks about stress. Oh yes, stress or a traumatic event... Grrr.

Presenter - "unexplained symptoms" and the doc agrees. V similar to ME as no diagnostic test. Also controversial like ME.

Grrr grrr and grrr again.

(actually, given the emoji, that should prob read " Yowl yowl and yowl again."

 

[shak8]

GMB (Good Morning Britain tv show) discussing Fibromyalgia (31.8.18) with DR Ellie Cannon due to the news radio host Kirsty Young would be stepping down from the beloved BBC Radio 4 programme Desert Island Discs.



mentions comparison with ME

My comments (as a fibromyalgia person). The doc states that docs have a deficiency disorder: that they aren't good with illnesses that are not simply, recipe book-like treatments. Doctor deficiency disorder is my new diagnosis for this lack of comprehension/compassion. DDD

Ok, fibromyalgia is a life-long illness. I have never heard of a relapsing kind. I think this must be a mis-diagnosis, if someone relapses, or is cured.

The doc lists the treatments: includes physical exercise, mindfulness. But guess, that is not is the latest research of helpful treatments. The most helpful thing is rest and cutting back on your to do list, simplifying your life, PACING, just as in ME.

What tripe.