Fibromyalgia Action UK
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Doctors and their double standards

So after a week in which my diagnosis has been changed from anti-ccp positive RA to fibromyalgia and I have been told to go away and get on with my life and may be take up mindfulness or something as it's all in my head it has got me reflecting. I'm having to do this because I can't carry on the house work because the pain in my joints in my hands, knees and feet are so painful I've had to stop.

My diagnosis has been changed because my bloods show no inflammation, on physical exam the registrar tells me my fingers doesn't look swollen to him (though I can't get my rings on - he tells me I'm imagining it because I'm body dysmorphic ) but without these obvious factors even if my anti-ccp test is positive he cannot diagnose RA because he needs proof.

Odd then that he and his colleagues feel so able to diagnose it as psychological without a single shred of evidence. Have they asked for a mental health assessment - no of course not. Did they ask me for any type of medical history regarding this in the same way they asked about my history of RA pain of course not. Are they qualified psychiatrists as well as rheumatologists no of course they aren't. And yet unlike their stance on RA they don't feel they need any evidence at all to make this alternative diagnosis.

Now I do firmly believe in psychosomatic illness and the powerful symptoms it can cause. There is an excellent book by a leading neurologist who specialises in it and it's fascinating. But I've been down this road before when I had a mysterious bladder complaint that didn't show on any tests (no because I'd actually trapped a nerve). I've seen a specialist health anxiety counsellor, a pain management psychologist and I paid to see a psychiatrist because I'm always open to ideas.

All three independently said I showed absolutely no sign of mental illness, anxiety, health anxiety or psychosomatic illness. All three felt I clearly had a physical illness that had at that point not been diagnosed. The health anxiety counsellor wrote to my doctor at the time and said given my raft of positive test results why was I being sent for health anxiety counselling and not being treated for my physical issues.

And yet today I find myself yet again despite positive blood results being discharged and told to put up with it as there is nothing wrong. A complete reversal of their opinion last year. But then of course last year I was newly diagnosed and not a problem patient who couldn't take her meds.

Ironically being left to cope with such awful pain and disability with no treatment might well be the thing that finally pushes me over the edge and in to insanity

14 Replies
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Hi, It's enough to drive you insane as you say, as you know I've been through the same thing, my knees and finger joints are really bad and getting worse but they still say it's not RA despite like you a rheumi saying after bloods and X Ray's that it was a few years ago and being on medication for years which helped the pain, they now say it's osteoarthritis and fybro, what can you do? Try to see yet another rheumi or go privately maybe , I've more or less accepted it now but it makes you think what the h... Is going on, take care

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Hi Helzbells sorry to here you are having such a difficult time. Ofen diagnosis change acceptance is difficult

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Keep sharing and we are always here to support you and here to listen if you need to chat.

Good lyck my friend

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Yes Good Luck, tell em you cant 'get on with it'. xx

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Sometimes we can't win, they don't appear to want us to. It shouldn't be this hard, shouldn't be a battle because we don't have the strength for it and I think they know this, that's why they get away with so much negligence. I would advise you put in a complaint but also ask yourself 'do you have the strength and will it be worth it?'. They just add to our stress levels. I see the doc when any new symptom is causing real problems, otherwise I stay away and 'get on with it' because that is preferable/healthier than going to see doctors. I don't need the hassle. Stay strong.

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If you feel that they have now closed off any other options, it may be worth paying to see a private rheumatologist.

It is so disheartening when you experience physical pain and it is dismissed as imagination or stress or something like it.

I suffered 10 years with body pain, rashes, migraines, photosensitivity etc and it was all put down as psychosomatic, anxiety and depression. I had one anti depressant after another, even the stomach pains I had was put down to stress, (later discovered to be gallstones). Like you, I saw a mental health person who declared that she could not help me because it was obvious to her I had something else going on.

Eventually a locum had a good look through my records, sent off for a few blood tests and hey presto I have lupus.

Don't give up, you know your body better than anyone. Keep going until you get the answers you deserve.

XX

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Sadly private here to see rheumatology is £350 for half hour and three month waiting list

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When I rang about seeing a Rheumy privately it was around £300 but I was offered an appointment for the following day!

Lu xx

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Hi my friend

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

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Can't remember the name of the book now it was by a woman neurological consultant. Out last year and in Waterstones. Amazing how the brain can cause real physical symptoms

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It sounds interesting? I agree with you completely Helzbells my friend as the brain has the power to do almost anything it likes in that department?

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Sorry to hear you're suffering...I'm going through similar issues right now too. Can you please tell me the author and title of the book you're referring to...any information helps! I'll be keeping you in my prayers. God Bless & Keep You! Christy

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My goodness I feel your frustration. I had high inflammatory markers and was referred to Rheumatology. I had bloods tests with them and x rays. I went back and was discharged. He said b****y tests normal didn't even discuss the x rays. Asked who diagnosed my fibro and I said a member of your team in this very room 3 years ago... he said OK well tell me your symptoms. I did. He said have you been reading Google? ! Cheeky b*****d. I told him I'd never heard about it before being diagnosed and that I just needed to get back to 'normal' and work. He said well here's your booklet on Fibromyalgia and under his breath said something like 'that'll help for benefits'... then he went on 'why would you want to work.. I wouldn't! '....... I got outside and burst into tears. There really are some heartless morons about.

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I would have b****y reported him. That's shocking. It's worth remembering that in the 1930s asthma was considered a psychological illness simply because they didn't understand how it worked

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