Well-known, famous people with fibromyalgia

[Hutan]

But I doubt that patients with, say, Cushing's Syndrome - an extreme manifestation of high cortisol, are pain free.

AP, that link you provided does not list pain as a symptom of Cushing's disease. I checked another page on Cushing's, and it too did not suggest that widespread pain was typical of this syndrome that results from too much cortisol (including as a result of long term corticosteroid medication).

Higher pain than normal causes cortisol levels to increase. I don't think we can reverse that relationship and say that high cortisol levels cause pain. And, therefore, the idea that previous trauma causes a sustained high level of cortisol which causes chronic pain doesn't seem to hold up.

These links suggest that some people who suffer trauma of various kinds may suffer measurable effects on their cortisol levels :... Effect of previous trauma on acute plasma cortisol level following rape

Here's the abstract for that paper:

Abstract
Objective: The authors examined the relationships among history of previous assault, severity of rape, acute plasma cortisol level after rape, and development of rape-related post-traumatic stress disorder (PTSD).

Method: Blood samples were drawn from 37 adult female rape victims within 51 hours after they had been raped. The subjects were assessed for history of previous assault and for the presence of PTSD 17-157 days (mean = 90 days) after the rape.

Results: Women with a history of previous assault had a lower mean acute cortisol level after the rape but a higher probability of subsequently developing PTSD. A significant interaction between history of previous assault and the severity of the index rape was observed: only women who had never been assaulted before had higher cortisol levels following high-severity rapes (those which included injury or multiple types of penetration) than low-severity rapes.

Conclusions: The authors conclude that previous traumatization may attenuate the acute cortisol response to trauma.

The paper only looks at levels of cortisol immediately after the rape, so it says nothing about long term levels of cortisol. What the paper appears to be saying is that women who had not been assaulted before had higher levels of cortisol immediately after being raped than women who had been assaulted before. That's not surprising. Neither is the fact that it was the women who had a history of previous assault who were more likely to develop PTSD.

Cortisol helps us fight or run. It's not surprising that a woman dealing with a first assault would have a higher level of cortisol immediately after it than a woman who faced physical abuse every weekend. The paper doesn't say anything about the relationship of trauma to long term levels of cortisol or to long term physical pain.

 

[Hutan]

These links suggest that some people who suffer trauma of various kinds may suffer measurable effects on their cortisol levels :
...

Chronic Pain Patients Typically Have High Cortisol Levels

That link is to a magazine article that talks about a study on 16 people with back pain. Given that acute pain can cause high cortisol, someone with back pain suffering a flare probably would have higher than normal cortisol. But there are no statistics given for this very small study. There's no mention of any past trauma, so I don't think it is evidence of past trauma affecting levels of cortisol or pain.

 

[Jonathan Edwards]

There's something peculiar about this story.
Compare it with this story.

Last week there was an unusual combination of heavy rain and high wind and water came through the bedroom ceiling and spoiled the carpet.

I told my psychotherapist about this and she asked if it had ever happened before. I realised that on 14th October 2003 exactly the same thing had happened. A combination of heavy rain and high wind was followed by water coming through the bedroom ceiling and spoiling the carpet.

I suddenly realised that this explained the water on the carpet - the previous episode of rain and wind must explain it - it was exactly the same.

There is something not quite right about the logic here if I am not mistaken.

 

[Jonathan Edwards]

I wouldn't worry about cortisol levels. When I was a registrar I did a study on patients coming in to hospital and just being admitted to the ward was associated with a rise in cortisol -regardless of why they were coming in. Much as expected.

 

[DokaGirl]

I wouldn't worry about cortisol levels. When I was a registrar I did a study on patients coming in to hospital and just being admitted to the ward was associated with a rise in cortisol -regardless of why they were coming in. Much as expected.

Sounds a bit akin to white coat syndrome: BP elevated with visit to doctor.

 

[Woolie]

And yet fibromyalgia can arise de novo, in calm waters, as it did for me, except perhaps that I was having lower estrogen levels at the age of 46 and having signs of menopause. But at the time, I was doing exceptionally well life-wise, and mentally. I'd say that I had never felt more stress-free.

Yes and the opposite is true too. Many people who've led absolutely shit lives, who been raped or attacked or repeatedly abused or even trafficked, don't end up with fibro, or any sort of chronic health condition. As my other half always says, don't forget to consider all four cells:

 

[Woolie]

Oh, and not to mention, as @rvallee says, you need a consistent, objective criterion for deciding whether someone has experienced significant trauma that's not contaminated by their current health status, and you need to rule out confounds (such as gender).

 

[mango]

I just posted in the News form Scandinavia thread about a Swedish celebrity who has written about sexual abuse, destructive behaviour and ME in her new autobiography.

 

[Arnie Pye]

AP, that link you provided does not list pain as a symptom of Cushing's disease.

I don't see that as definitive proof of anything, to be honest. I had shocking chest pain as a result of severe iron deficiency anaemia.

This page from the NHS doesn't mention chest pain as a possible symptom of iron deficiency anaemia.

https://www.nhs.uk/conditions/iron-deficiency-anaemia/

But this page from drugs.com (a US site) does :

https://www.drugs.com/mcd/iron-deficiency-anemia

...

Another condition in which lots of symptoms get ignored by the NHS is hypothyroidism.

The NHS produced the following link to show the symptoms they consider as ones to be found in hypothyroidism :

https://www.nhs.uk/conditions/underactive-thyroid-hypothyroidism/symptoms/

And yet a list produced by a patient charity for thyroid disease shows a much longer list :

https://thyroiduk.org/if-you-are-undiagnosed/hypothyroid-signs-and-symptoms/

One of the major symptoms of hypothyroidism is fatigue which can be so severe that it hurts - a lot.

...

And surely the same sort of comments can be made about ME. If a doctor was to create a list of symptoms they would expect to find in ME, it would be an awful lot shorter than a list created by patients.

...

An n=1 anecdote. A few years ago I did a 4-part cortisol saliva test which showed that my cortisol was way over the range for most of the day. I was in a lot of pain, but I was also untreated for hypothyroidism and was iron deficient, so I can't prove that the high cortisol was adding to my overall pain, but I believe it was. For a few years after I discovered the high cortisol I took a supplement (an adaptogen) that lowers cortisol. It helped my pain levels rather a lot. I can't do saliva tests for cortisol any more though, because I have such low saliva that I can't spit, so I don't actually know what the result of my own self-help was.

 

[boolybooly]

I feel very sorry for Stefani. It sounds as though she has been treated very badly by someone who has hurt her and that makes me sad. I hope she finds justice.

What occurs to me is that fibromylagic pain does not necessarily result from a PTSD inducing trauma and I dont think that is what she is saying either.

It may be that she has two conditions to deal with, one of which is hers and one of which is a result of an abusive relationship and she is just showing how painful FM is by comparing it with something everyone can understand is very painful.

They both cause intense pain. The body deals with psychological pain using some of the same parts of our brains as physical pain which is why we cry in either case, so for her both ordeals will seem to have this in common in the sense that they both are extremely painful and she has to dig deep in a similar way to overcome the pain and carry on.

While vitD3 and calcium might help with the muscle pain, it wont help with the trauma much, though inositol might help a little if it involves obsession.

The problem is we PWME are locked in a battle of perceptions in the media with a bunch of doollally psychologists working for the insurance lobby who claim that ME is caused by psychological dysfunction, which is nuts. So juxtaposing the two forms of pain like that triggers us because its so easily misread as supporting the psych lobby. I dont think it does though, on a closer reading.

 

[ukxmrv]

I feel very sorry for Stefani. It sounds as though she has been treated very badly by someone who has hurt her and that makes me sad. I hope she finds justice.

What occurs to me is that fibromylagic pain does not necessarily result from a PTSD inducing trauma and I dont think that is what she is saying either.

It may be that she has two conditions to deal with, one of which is hers and one of which is a result of an abusive relationship and she is just showing how painful FM is by comparing it with something everyone can understand is very painful.

They both cause intense pain. The body deals with psychological pain using some of the same parts of our brains as physical pain which is why we cry in either case, so for her both ordeals will seem to have this in common in the sense that they both are extremely painful and she has to dig deep in a similar way to overcome the pain and carry on.

While vitD3 and calcium might help with the muscle pain, it wont help with the trauma much, though inositol might help a little if it involves obsession.

The problem is we PWME are locked in a battle of perceptions in the media with a bunch of doollally psychologists working for the insurance lobby who claim that ME is caused by psychological dysfunction, which is nuts. So juxtaposing the two forms of pain like that triggers us because its so easily misread as supporting the psych lobby. I dont think it does though, on a closer reading.

I think the clue is her use of the term "the body remembers" as that is the name of a book that the IAPT person recommended. I think there was a thread here on the book but I can't find it.

 

[Tia]

I feel very sorry for Stefani. It sounds as though she has been treated very badly by someone who has hurt her and that makes me sad. I hope she finds justice.

What occurs to me is that fibromylagic pain does not necessarily result from a PTSD inducing trauma and I dont think that is what she is saying either.

It may be that she has two conditions to deal with, one of which is hers and one of which is a result of an abusive relationship and she is just showing how painful FM is by comparing it with something everyone can understand is very painful.

They both cause intense pain. The body deals with psychological pain using some of the same parts of our brains as physical pain which is why we cry in either case, so for her both ordeals will seem to have this in common in the sense that they both are extremely painful and she has to dig deep in a similar way to overcome the pain and carry on.

While vitD3 and calcium might help with the muscle pain, it wont help with the trauma much, though inositol might help a little if it involves obsession.

The problem is we PWME are locked in a battle of perceptions in the media with a bunch of doollally psychologists working for the insurance lobby who claim that ME is caused by psychological dysfunction, which is nuts. So juxtaposing the two forms of pain like that triggers us because its so easily misread as supporting the psych lobby. I dont think it does though, on a closer reading.

Good points.

I think the clue is her use of the term "the body remembers" as that is the name of a book that the IAPT person recommended. I think there was a thread here on the book but I can't find it.

The thread is here https://www.s4me.info/threads/book-the-body-keeps-the-score-bps-type-rubbish.16299/#post-280866 The book is called 'The body keeps the score'.

 

[Hutan]

The article is a bit hard to make complete sense of. Here's Stefani speaking with Oprah about her trauma and fibromyalgia last year. I think it's pretty clear that she attributes her chronic pain to past trauma. Unfortunately, this idea of a link between trauma and fibromyalgia and/or ME/CFS doesn't get much critical scrutiny, and it does get a lot of promotion from powerful influencers.

She mentions other possible causes of fibromyalgia too. Like the rest of us dealing with fibromyalgia and/or ME/CFS, she really isn't sure about what is going on.

She makes a very strong commitment to facilitating the finding of answers to the question of what fibromyalgia is, which is great.

 

[boolybooly]

Thanks Hutan, that is pretty unequivocal.

 

[rvallee]

She makes a very strong commitment to facilitating the finding of answers to the question of what fibromyalgia is, which is great.

A financial commitment would make all the difference. Seriously she could single-handedly fund more fibro research than everything so far combined and it would probably not even cost half her fortune. If she wants to.

Not blaming but it's annoying how many people could make a massive difference but choose not to. Especially as this is basically the only reason people continue to pretend rich people deserve to have more wealth than entire countries. And yet it disappoints every time because they never actually use that money in a useful way.

 

[Trish]

I dont think it's fair to make such a criticism of an individual - many people choose to make donations anonymously. None of us can know what another individual is donating.

 

[Ariel]

I am wondering if some kind of effort can be made to reach out to ask her to help with funding FM & related illnesses if she isn't doing so already. Chronic illness is part of her image and features fairly prominently in her materials. I think it's positive that she wants to find out the mechanisms even though some of what she says leaves the area open to misunderstandings. I didn't read what she said as being as dire as it could have been.


A (potentially sensitive) personal story:

I went to a recommended occupational therapist who was supposed to help me with some eg schedules etc after being diagnosed for the second time with ME/CFS. One of the first things she asked me is if I had ever been raped. I thought this was potentially a really awful (and irrelevant) question to ask someone and could have some really awful psychological effects if they started to associate their assault or abuse with their ME/CFS and symptoms. I have in fact had these bad experiences, but I knew some context and background about why she might be asking this - and I knew it was wrong. I knew I don't have ME/CFS because some things happened in my life years ago.

I felt really bad that they were asking these questions. Worse, the OT seemed to have no idea how to cope if the person said they had been assaulted. I said no as I wanted treatment and advice about how to manage ME/CFS, not some kind of bogus psychotherapy. She seemed relieved and said that people had "all kinds of stories". She obviously had no training in dealing with sexual assault or abuse. If you ask a lot of people if they have ever been abused as an intake question, you are going to get a lot of answers. Unfortunately rates of abuse are high. She just seemed to say she had to get it out of the way and tick it off her list up top. Very worrying.

I hope this is not still happening to people. Potentially extremely harmful, to say the least.

 

[Woolie]

Speaking of singers and chronic illnesses, a contrasting example comes from Sia, who suffered from chronic severe depression (which is pretty powerfully described in the song Breathe Me below), and eventually discovered she had Graves disease. Treatment for the Graves pretty much resolved the depression.

This article describes this briefly, but falsely claims that Graves disease is due to stress. Are we really going to say that if you work too had or feel to much pressure to perform in your job, you will be likely to get Graves disease? Lots of relaxed lazy arses get Graves. And I think its fair to say that 99.9% of people in positions like Sia (performance pressure mainly) don't develop Graves. Rather, Graves disease, when it occurs, is probably part of the cause of the stress, not its consequence.

It seems that in the arts world in particular, illness has to be a metaphor for something else, it must have a moral or psychological "message" to convey. So that people can view it as a positive stage in their development and not some random bad shit.

 

[Woolie]

Just thinking on it, the idea that autoimmune diseases result from stress has a really dark side: Because these diseases are more common in women, it promotes the idea that women are somehow more psychologically fragile and vulnerable to stress than men.

 

[petrichor]

I get the impression that there's a lot more willingness amongst fibromyalgia sufferers to accept that psychological factors and trauma contribute to or cause fibromyalgia. Despite their willingness to accept that though, that doesn't stop doctors from viewing them with a fair bit of disdain and judging them significantly, possibly even more so than ME patients, interestingly. Which might make for a good argument against capitulating to a psychological view of ME in any way (unless there's good evidence for it, of course).

Maybe they're more willing to accept that because it is actually true in a certain regard - any type of pain is affected by psychological factors. However that doesn't make fibromyalgia psychogenic.