I've just listened to Kirsty Young (ex TV & radio presenter- Desert Island discs) being interviewed by Emma Barton on this mornings 'Today' programme on BBC Radio 4. (sorry...couldn't organise a link but it can be accessed on BBC Sounds.) She talks about living with fibromyalgia.
So much of what she said could have been about me...and many of us here I feel.
PMR throws up many of the same concerns and questions that Kirsty hilights.
She talks so eloquently and accurately about her journey to diagnosis, the challenges she faces, emerging anxieties, emotional disappointments and so much more.
Its well worth a listen.
She probably doesn't really say anything more than we already know, but on some level I found it very positive to hear these shared issues being discussed on air.
(Later on in the programme there's a short discussion around treatment and accessibility to help for chronic pain. )
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Kendrew
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"there's a short discussion around treatment and accessibility to help for chronic pain"
Woefully inadequate for anything but how many on the forum have ever had such an offer? I go to a Pain Clinic but as I said to my rheumy a few months ago - all she has done is say no!! I know what works for me and she is unwilling to let me have any of the options. My rheumy took an executive decision and just used one option - and the result has been the lowest level of pain for more than 2 years that is actually not only lasting but improving.
The provision for chronic pain sufferers is woefully inadequate and I think some of the listeners who'd contacted the show, did try to get that across. It would be nice to think though, that the interview and comments might provoke some positive actions, but I won't hold my breath!!
My first thoughts on reading the headline were 'I'll bet it's really something autoimmune, maybe PMR'. The poor woman, I wish her well and admire her for speaking up
For any Daily Telegraph readers, there is an article on page 22 of the digital edition today about this interview. One doctor told her that fibromyalgia doesn’t exist. Apparently, she said it’s somewhere they put people who haven’t got anything, just to tell them they’ve got something. It beggars belief. You don’t wish people ill, but someone like that needs to get a taste of what their patient is suffering.
when I was diagnosed with fibromyalgia, about 50% of doctors didn’t believe it’s a real disease. I suffered a lot of people thinking I was depressed, or just putting it on. I didn’t tell people I had fibro, it was something to keep secret. I was referred to a pain clinic. My appointment lasted under 5 minutes. The consultant said I was already on tranadol, what more did I expect. I said I was hoping for something to remove the chronic pain. Tramadol was attacking my acute pain. He said you weigh far too much (I’d been on lots of short courses of steroids for chest infections & gained a lot in 3 years of being sick most of the time) & that, therefore, he could give me nothing to ease my pain. I’ve been in chronic pain for 12 years now. Every day sone part of me is in pain (but not just due to fibro, I have many other medical problems, as some of you know). But my GP was disturbed that I had been only getting 3 hours sleep for 2 years, & always in pain. Now I have 3 different things to help me sleep, I have a muscle relaxant, & I am trialling pain patches, moving up in dose every few weeks. My doctor had been busy diagnosing me for years, we’d talk symptoms, then diagnose & try & cope with latest disease. So I’d never sat & talked sleeplessness & pain. A GP in England can diagnose good measures for pain now…they aren’t restricted to just handing out paracetamol!! The main thing offered for fibro was a course on positive thinking! Today my ankle is twice the size with dreadful pain to walk. Yesterday it was hands & osteoarthritis. I dislocate joints due to hypermobility. I fall a lot & am always bruised somewhere… I broke my Coccyx in a fall, & it still hurts to sit down. Some pain will always be felt. I think if this as the body telling me to be careful, or to get help. If pain killers stopped all pain, how would we know there is a problem??? Just a thought!
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