Well-known, famous people with fibromyalgia

When I was diagnosed I was told that there's no cure than there's nothing they can do for me. I was extremely impressed.

 

https://www.theguardian.com/media/2...of-desert-island-discs?CMP=Share_iOSApp_Other

Kirsty Young to step down as host of Desert Island Discs, permanently.

 

My consultant (Dr Fred Nye, who was one of the good guys before he fell in with the BPS crowd ) diagnosed me with PVFS, though he did ask me how I would feel if I couldn't work again. My fab GP at the time wrote to one of the people who needed Doc Letters that I had "a post viral fatigue syndrome that looks more and more like ME". She was a GP trainer at the time. The practice that I attend have always been kind and supportive - I do realise how lucky I am!

 

My sister-in-law has FM, and the first time she was off work when she first got FM, she was able to return to work after taking a year off. She was reinjured a second time at work, and was forced by her disability insurance to do a return to work programme which caused her a permanent back injury and she can now no longer work. Her GP tried telling disability that if they allowed her to heal from her work injury that in all likelihood she would be able to return to work within a year. They wouldn't listen.

 

"on the way to feeling much better" is spin, meaning she is not yet better, but hopes to get better...

 

If by treatable you mean there are approved drugs that do some a little improvement, then sure, it's more treatable.


The prognosis for fibromyaglia patients (by Dr. Robert Bennett, of U-Oregon and who had thousands of fibro patients and who discovered the growth hormone deficiency due to sleep problems in fibro pts, he said: 1/3 get worse, 1/3 stay the same, 1/3 get better.

 

Interestingly, some UK clinics give the same stats for ME patients. This is based on clinical anecdote only, however.

 

Yeah. Reminds me that quite a lot of patients say they’re “recovering” when generally one doesn’t know if one is going to fully recover (or something close to it). Activity ceilings can kick in at lots of different levels.

 

Merged thread

Lady Gaga ties her fibromyalgia to previous trauma, sexual assault

The interesting part:

"After Gaga, whose real name is Stefani Joanne Angelina Germanotta, went to a hospital to seek treatment for physical pain years after being raped, she said, the recurring sensation of intense pain turning into numbness felt familiar.

"I realized that it was the same pain that I felt when the person who raped me dropped me off pregnant on a corner by my parents' house because I was vomiting and sick 'cause I'd been being abused," she said, adding: "I was locked away in a studio for months."

(...)

Gaga recalled having a "total psychotic break" after she was raped. "For a couple years, I was not the same girl," she said.
The pain persisted, however. In recent years, Gaga has been found to have post-traumatic stress disorder, which she says she developed as a result of being raped, and fibromyalgia, a condition that causes pain all over the body.

"The way that I feel when I feel pain is how I felt after I was raped," she said in "The Me You Can't See." "I've had so many MRIs and scans. They don't find nothing, but your body remembers. I couldn't feel anything. I disassociated. It's like your brain goes offline. You don't know why no one else is panicking, but you are in an ultra state of paranoia."​

https://www.insider.com/lady-gaga-impregnated-rape-abuse-the-me-you-cant-see-2021-5

 

It's probably what she has been told. I haven't been posting about this as I want to keep taking notes and do a proper write-up one day.

After a bad traffic accident I developed PTSD and pain. Told very similar things by the NHS IAPT therapist in England.

 

I've been told similar. After believing it for a couple of years and going along with that narrative, I no longer find it helpful. I actually really resent the 'your body remembers' language. I think it's really dangerous - it feel like being told that the trauma is still in you when actually you may have gotten over it pretty well and be pretty well adjusted, you just happen to also have a chronic illness. It all seems to be based on very weak evidence.

Trauma can certainly have a profound affect on people and I'm not saying Lady G's pain isn't linked to her trauma - we can't know. Trauma is essentially extreme stress for a prolonged period so it's certainly possible it could be connected. But I hope she doesn't try to say that fibro is caused by trauma because I don't think there's evidence for that.

 

What are the odds that she came up with this idea all by herself? I think they are low. Someone told her these things and she believes them.

 

I assume that any kind of trauma - dramatic and severe, or milder but frequently repeated - e.g. being raped or tortured or suffering domestic abuse, or suffering from chronic pain or being bullied at home, school or work will raise cortisol. If the trauma is not resolved or can't be stopped then cortisol might stay high for years. In some people cortisol might not stay high, it might eventually end up very low. Cortisol is relevant to lots of biochemical processes in the body, so if the level becomes much higher or lower than normal then it seems likely to me that illness and pain will ensue.

 

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.

 

Can you think of anything published that would show this clearly though? i.e. a paper on rape survivors that shows their cortisol levels clearly correlate to pain.

 

I think there are far more stresses on the human body than just the things I mentioned in post #5. So, low or high cortisol, low or high adrenaline levels, low or high sex hormones, low or high vitamins and minerals, a diet too low or too high in fat, protein or carbs will probably stress the body. And too little or too much food generally will probably stress it too, as will being unfit generally.

 

I've watched stories about soldiers with PTSD who were later diagnosed with FM.

There is most likely a risk factor for the development of symptoms of FM in genetically predisposed individuals?

 

What we can say is that such trauma is neither necessary nor sufficient for FM: not everyone who has FM has experienced such trauma, and not everyone who experiences such trauma will develop FM. So any plausible model linking trauma to subsequent FM will have to involve multiple causes.

Postulating trauma as a cause for anything is scientifically problematic, until we have an independently verifiable definition of what trauma is, as until then it is impossible to produce a model that is potentially predictive. Certainly given trauma is a very subjective concept, it is very easy to invent correlations after the fact.

At best we can say so far is that some people experiencing certain types of experience also develop FM. However we do not yet know if, all other things considered, that people with ME even show a higher incidence of previous experiences of trauma than appropriate controls. But even if there turns out to be a higher incidence of trauma in the FM population this does not necessitate a causal relationship, for example it is possible that people with FM experienced a less stable period in their life, that impacted on their diet that in turn increased their risk of FM, but also placed them in a situation where they were more likely to experience such trauma.

[added - the suggestion that soldiers with PTSD may go on to develop FM also does not necessarily indicate a causal relationship, it is also possible for example the experiences that lead to PTSD also were associated with exposure to harmful chemicals that increased the risk of developing FM. ]

 

That's the magic of making something as generic and common as "life events" as a cause for something: it can literally be anything. Got a promotion? Too much added stress and responsibilities. Passed over for a promotion? Dissembles into a puddle of self-doubt and excessive worry. Heads they win. Tails they win. Sideways they win. Perpetually spinning they win. Never tossed they win. They win every time because anything can be considered a "life event", even the absence of any event: you're probably just bored and/or depressed.

No different than arguing astrology must be real because how can you claim the Sun doesn't affect your life? But it's not about what's true or what evidence supports it that matters, what matters is belief. And in the BPS belief system, a "life event", literally anything, plays the same role as "the Lord works in mysterious ways and has a plan for you".

Tell enough people the same thing and as long as it's statistically common you will "find" just enough things to support an existing belief.

 

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

Long term effects of childhood trauma on cortisol stress reactivity in adulthood and relationship to the occurrence of depression

Effect of previous trauma on acute plasma cortisol level following rape

Chronic Pain Patients Typically Have High Cortisol Levels

In the above links the relationship implied is "problem" leads to "cortisol derangement, which could be low or high", rather than high or low cortisol leading to problems including chronic pain.

I can't find links which suggest, for example, that high cortisol leads to pain. But I doubt that patients with, say, Cushing's Syndrome - an extreme manifestation of high cortisol, are pain free. Nor do I believe that people with hypocortisolism aka adrenal insufficiency are pain free.

Iron deficiency has been found to lead to reduced cortisol :

Reduced cortisol secretion in patients with iron deficiency

Cortisol as the cause for several diseases and Folic Acid and Vitamin B12 as possible therapeutic targets

I doubt this answers your question though.