Well-known, famous people with fibromyalgia

petrichor said:
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.
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Yea, I've noticed that in FND too, and I think the reason for the greater acceptance of psyc accounts in these areas is that the accounts are more likely to emphasise the role of external events that the person had no control over, like trauma and abuse. So instead of telling the patient that their thinking is wrong (therefore putting the responsibility on the patient to change it), they give the person permission to attribute at least some of the blame externally (its not your fault, x, y and z happened to you, its not surprising that you've reacted in this way, now how can we help you address it).

As you say, its all a bit of subterfuge really, because we know deep down that these doctors believe only certain vulnerable persons will develop illnesses as a result of trauma. But that's not how it appears to patients. So its a really clever lie.
 
Ariel said:
One of the first things she asked me is if I had ever been raped.
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That is absolutely disgusting. In any setting to ask a person that, especially in the context of OH, or indeed in any context other than that where it would be explicitly relevant (eg examining evidence of a vaginal injury in the gynaecologist's office), is absolutely outrageous, and the only appropriate answer in my opinion is 'it's none of your f'ing business!!!'

Not to mention asking that could be dangerous... They think they're so f'ing clever but they dont even know that it can be massively triggering even to disclose something like that, causing dangerous levels of flooding of traumatic memories/flashbacks etc. Its unsafe & potentially abusive, not to mention outrageously personal & intrusive, to be asking things like that.




Also. I'm very sorry to hear you had that horrific experience @Ariel and that you had to deny it in order to get appropriate support with your ME. No words would do any of that reality, justice



ETA sorry about all the 'f'ing' but wow that makes me absolutely livid :mad: How dare they?
 
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Ariel said:
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.
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That's absolutely appalling. She wasn't qualified to be asking you such intrusive and potentially triggering questions without any warning. Like you say, what would she have done if you said yes? Very worrying. I'm sorry that you went through that awful situation.
 
Woolie said:
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.
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As a writer, I can be a real sucker for a neat metaphor. But then I read Susan Sontag's Illness as Metaphor, which rightly disabused me of that rabbit hole. If only she was more widely read.

WRT people with fibro or FND being more willing to embrace psychological explanations -- and especially Lady Gaga here -- I think there's a bit of being doubly victimized. As in "not only was I raped, but now that rape caused my fibromylagia." As you say, @Woolie, it gives one an explanation and an external explanation at that rather than being stuck with no explanation except random shitty luck.
 
Michelle said:
As a writer, I can be a real sucker for a neat metaphor. But then I read Susan Sontag's Illness as Metaphor, which rightly disabused me of that rabbit hole. If only she was more widely read.

WRT people with fibro or FND being more willing to embrace psychological explanations -- and especially Lady Gaga here -- I think there's a bit of being doubly victimized. As in "not only was I raped, but now that rape caused my fibromylagia." As you say, @Woolie, it gives one an explanation and an external explanation at that rather than being stuck with no explanation except random shitty luck.
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Also it makes it seem potentially fixable - 'if I can fix/process the trauma, the pain will go away'. I think that's probably the most seductive reason to embrace it.
 
It's quite a long article describing her diagnosis of rheumatoid arthritis and secondary fibromyalgia. She was told to take time out of work to rest, and has had drug treatments and 4 years on is feeling a lot better.
 
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I wasnt able to read the whole article only the health related bit at the beginning so i dont know if she comes back to it later. But I have enjoyed Kirsty's work in the past & i'm glad she's doing better. I'm also glad she makes it clear that she's been very fortunate...

She was told that NHS patients can wait 18 months to see a specialist and then see a rheumatologist just once. “I don’t know how people deal with it. Well, I know what they do. They shovel useless painkillers down their neck and they cry in the loo on their tea break.”
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Moved post
It was like someone had drugged me’ — Kirsty Young on her life-altering illness

"The first person to be interviewed by the broadcaster Kirsty Young for Desert Island Discs, back in 2006, was the illustrator Quentin Blake and the last, in 2018, was the neurosurgeon Henry Marsh. Sandwiched between those two men were hundreds of illustrious castaways and for many of them it was as if they were stepping into the confessional box rather than a studio. Instantly recognisable for her sultry Scottish brogue, Young became adept at coaxing revelations out of her guests. Morrissey told her he believed suicide to be honourable; Yoko Ono disclosed that she and John Lennon had considered aborting their son Sean; and David Walliams talked about why it would be easier if he were gay.

Today it is Young, 53, who is opening up for the first time about the debilitating illness that forced her off the airwaves in 2018. That summer she revealed that she was suffering from a form of fibromyalgia, a chronic condition that causes widespread pain, and would be taking a break from the programme. In July 2019, after an 11-month absence, she said she was stepping down permanently. At the time she said she was “well on the way to feeling much better” and that the enforced absence had “altered my perspective on what I should do next and so I’ve decided it’s time to pursue new challenges”. Then she disappeared. She has been gone for almost four years but next week she returns to the BBC to anchor the Queen’s Platinum Jubilee.

When we meet on a sunny day in north London, it is almost surreal to hear her distinctive voice up close and personal. She looks fresh-faced and bright-eyed — you would never guess the battle she has been waging. For the past few years Young has been dealing with “severe, relentless and sometimes debilitating pain. I’ve got rheumatoid arthritis with secondary fibromyalgia,” she says quietly, before taking me back to that summer in 2017 when her life started to unspool. “I had extreme joint pain,” she says. “I’d wake up and I’d feel like I’d got glass in my joints.” The pain got so bad it disrupted her sleep. “In the morning, I felt like somebody had come in with a baseball bat and given me a ‘doing’, as we say in Glasgow, in the night.”

She was also experiencing extreme physical tiredness. “I couldn’t walk up the stairs without stopping in the middle. It’s not like tiredness if you’ve had a big walk or done some gardening. It’s like somebody had drugged me, like you’d taken a sleeping tablet at the wrong time in the day and you were completely losing it.”

More at link.
 
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Jonathan Ross reveals his rarely seen daughter Betty, 30, is currently using an electric wheelchair due to ongoing battle with fibromyalgia

Jonathan Ross has discussed his daughter Betty's battle with fibromyalgia, saying she is currently using an electric wheelchair.

The chat show host, 62, opened up about Betty's long-term illlness, saying she currently can't walk too far but has been 'showing some improvement.

Betty, 30, also suffers from chronic fatique syndrome and Postural tachycardia syndrome (POTS) which causes an abnormal increase in the heart rate after sitting or standing.

Speaking on Friday's Loose Women, Jonathan said: 'She has fibromyalgia and she has chronic fatigue syndrome and POTS syndrome as well, which is where your heart rate shoots up.'

On Betty's current treatment, he added: 'We found a good… there's a thing called the Perrin treatment. The guy who invented it, he came to talk to me about it and she looked it up online because she's a smart young woman, so she has to want to do the treatment.
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https://www.dailymail.co.uk/tvshowb...y-30-currently-using-electric-wheelchair.html
 
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Jonathan Ross reveals ‘it’s been tough couple of years’ for daughter with fibromyalgia
Broadcaster Jonathan Ross has opened up about his daughter Betty’s fibromyalgia diagnosis, saying she is using an electric wheelchair and has experienced an impact on her mental health.

Speaking on Loose Women’s final episode before the new year, the ITV chatshow host, who presented Radio 2’s Saturday morning show for a decade, told the panel: “It’s been a tough couple of years for her in particular, but she is getting slowly better.”

Fibromyalgia is a chronic condition that causes widespread muscle pain and tenderness. It is often accompanied by fatigue, altered sleep, cognitive impairment – such as difficulty remembering things – and emotional distress.

Ross shared that his eldest daughter had Covid-19 at the beginning of the pandemic. Before her diagnosis with fibromyalgia a year ago, Betty was thought to be suffering from long Covid, which has a similar constellation of symptoms that overlap with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a complex and often debilitating illness that can follow viral infections.

“They don’t really know how to treat it, because there’s not a consensus yet,” Ross said, adding that 30-year-old Betty has been “showing some improvement” after undergoing the Perrin technique (involving the stimulation of the lymphatic system), which she discovered online.
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https://www.theguardian.com/society...of-years-for-daughters-fibromyalgia-diagnosis
 
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Kirsty Young: Doctor made me feel like I was ‘crazy’ over chronic pain

Kirsty Young was made to feel like “a crazy lady” by a doctor who told her that fibromyalgia did not exist.

Young was eventually diagnosed with the neuropathic disorder after suffering 18 months of chronic pain and extreme fatigue. The symptoms were so debilitating that she had to leave her dream job as presenter of Radio 4’s Desert Island Discs. But it took appointments with several doctors before she received her diagnosis.

“I went to see all sorts of different people, doctors and medics…[to one] I said: ‘I’ve read about this thing called fibromyalgia, could it be fibromyalgia?’

“They actually did snort. She snorted … I said: ‘That’s not a thing?’ She said: ‘That’s not a thing. That’s where we put people when they don’t have something, just to say they’ve got something.’

“Now, of course, I realise the depth of that particular medic’s ignorance on the subject.”

Speaking to Radio 4’s Today programme, Young added: “I went down lots of alleyways before I eventually found somebody who said: ‘Oh, yes, that’s a neuropathic pain disorder.’

“Once it was named I thought: ‘Ok, it’s not in my head. I’m not a crazy lady then. What I feel is real. This thing that’s bringing me to tears and decimating me is real.’”

Young, now 55, stepped down from her job in 2018. Describing her symptoms of brain fog and extreme fatigue, she said: “I have at my worst felt that somebody has drugged my cup of tea – almost swaying with fatigue and having to opt out of doing anything because the fatigue is just like cement in your body.”
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Kirsty Young: Doctor made me feel like I was ‘crazy’ over chronic pain (msn.com)
 
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