Hi all, I think the heading says it all, the result of my visit to the consultant who basically seized on the fact that I lost my mother 3 months ago & diagnosed a further condition..FIbromyalgia! Convenient when I have never had this before, is this the “ get out clause” to effectively flatten any hopes of me or come to that a lot of other over sixties getting biologics either now or in the future? Speaking to my cousin, who has inside knowledge regarding the medical system, she gave me an instance whereby a long time friend was literally talked out of asking if she possibly needed a hip replacement due to the chronic pain she was in, by a consultant telling her there was “nothing wrong with her hips, it was ( you guessed it) fibromyalgia”. Upon seeking a second opinion & having an X-ray, she was told a completely different story, she goes in for her first hip operation on the 12th December after being told BOTH her hips needed replacing! So, me thinks is Fibromyalgia is being used as a “gigantic fobb off” for a wide spectrum of medical conditions on a grand mass scale by a cash strapped NHS?
For myself, after being devastated by being told that there is nothing further to be done to alleviate the pain in my hands, feet, neck, shoulders etc etc except amytryptaline this is not acceptable. I was told my last blood test on 3rd October showed low inflammatory markers, but that was only 4weeks after a large steroid injection which has worn off now, to which the consultant said “ well if it’s worn off after 4_5 weeks then it wasn’t inflammation in the first place but fibromyalgia”. Felt I wasn’t getting anywhere, no wonder we are called “RA Warriors” when we have to literally battle through quicksand, I now have to consider the private second opinion route...I would like to here from anyone else who has had a similar experience.... thank you all x
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Juliachoo
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I am disgusted to hear this. What is wrong with these people. Do they think you’re lying about your pain? I would definitely get a second opinion. Like all professions there are good and bad amongst them. Although I’m English I spend a lot of time in Portugal and I’ve chosen to be treated here rather than the UK. Even then I swapped my Rheumatologist because the first one didn’t have one ounce of empathy or sympathy. Juliachoo, I’m in my sixties too and it does worry me sometimes about the ageist thing. I lost my Mother in March this year and they said my RA was triggered by the stress and get this- also because I’d stopped smoking! Go see someone else, get that second opinion. You’re worth it and need it.
Thank you Lyndak I feel the same.. funnily enough we spent a lot of time in Portugal! We sold our place near Gale last year after 13 years. We intended to spread our wings
& managed a month in Australia this year but now I don’t feel well enough to do long haul. We still visit Portugal & I will always love it but I have a bucket list & so wanted to do it. I looked after my mum for 7 years with Alzheimer’s which was horrendous & now feel cheated that I have the chance to go to places & am too ill to do it. I shall probably go the 2nd Opinion route as no other option. Enjoy the sunny weather, I so love it xx
Thanks Julia we are near Loule. We are back in the UK in two weeks ready for Christmas and I’m dreading the cold lol. Good luck with your second opinion
Yes we love & know Loule very well! You will need your thermals lol if today is anything to go by-4c. We live in Nottinghamshire if you are nearby let me know .... xx
Absolutely. Time to move on. Get that 2nd opinion, Juliachoo. 👍👍
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Aside:
Merely additional perspective from (non-cash strapped) medical systems regarding diagnosis 'labelling' :
My (layman's) understanding is some 'labels' 🏷 (fibromyalgia, being merely 1 example) are called:
. . . 🗑 'trash can' diagnosis
. . . 🗑 'wastebasket' diagnosis
. . . 🗑 'garbage can' diagnosis, etc.
because physicians 👩⚕️👨⚕️ are simply 'at a loss' (flummoxed 😯 ) as to what a patient's precise illness might 'actually' be. 🤔
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So, they toss it onto a pile/ into a generalized 'bin' 🗑 — a catch all 'label' 🏷.
That's not saying the symptoms (the manifestation of illness) isn't genuine — merely that physicians 👨⚕️👩⚕️ simply are unclear how to categorise/ parse/ label 🏷 it — where to 'shoehorn' it. 😳
Not a very comforting/ reassuring thought for us patients who'd like 'definitive' answers. 😳 Unfortunately, that's just not how 'the process' works. 😧
[Yet, I would like to think 🤔 , each (responsible, reputable, ethical, . . .) physician 👩⚕️👨⚕️ (working in (or out of) a 'cash-strapped system') does their best to accurately diagnose their patients, given the symptoms, test results, etc.. )
To add to the complexity of diagnosing, the all to common 'ever-changing', 'ever-mutating' symptoms of autoimmune diseases is like trying to change a tyre on a moving car
. . . 🚗. 💨 . . 💨
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😯 😳 🙃
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(Again, merely layman's 🤤 understanding. 😌 )
For what it's worth, Juliachoo, hope this might add a bit of additional/ supplemental perspective as far as diagnosis 'labeling' is concerned. 🙏
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For clarity, you & your cousin's assessment/ inklings of what's going on (in your specific situations & within NHS) may well be spot on. (I've no quibbles, qualms, doubts about your observations. 🙏 😌 ) Very disheartening. 😔 😞 I'm merely noting an additional perspective as far as 'diagnosis/ labeling' is concerned. 🤔
It's a postcode lottery. I am about to be given my 3rd Biologic I am 68 live in Leeds. I have had allergic reactions to the other two plus all other drugs 6 altogether. Getting my new one today fingers crossed it works this time. My Rhumy dept is run by Professor Emery
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has anyone been told they have enthesitis? Does that come only with PsA or also RA? Could fibromyalgia diagnosis actually be enthesitis?
Any one have experiences with the JAK medicine Baracitnib ?
Trochanteric bursitis and tendinopathy
Hip pain like I've never experienced before!!
More mixed messages about paracetamol and Gabapentin!! Getting frustrated.
