Hi there

My rheumatologist is flippant with me and makes light of everything I say when I try to describe what’s happening with my body; he even sort of jeers at me and makes jokes at my expense. At my appointment this week, I took a friend with me, who is a nurse, and she was shocked at how the rheumy treated me.

The rheumy said I’m ‘atypical’ and it might not even be RA as I’m sero-negative and he can’t understand why I feel ill. He was dismissive about the pain, stiffness and fatigue, then when I asked him what else it could be, he patronised me, made comments about the aches and pains of getting old and decided I should take citalopram. When I said I didn’t want an anti-depressant as I wasn’t depressed (and I have been in the past so I know what it feels like) he laughed and said it would give me an energy boost and ‘sort me out’. He then whispered to me (as there were two other people in the room) that he’d put his wife on it and it made her much easier to live with. I am on HDX 200 mg and voltarol plus pain killers for me to self-manage.

Apart from the frustration and humiliation, I am worried as the RA is only marginally better, nothing is changing in the management of the disease (apart from the suggested citalopram) and I can’t stay off work much longer. However, if I go back in my current state of health I won’t be able to do my job.

Has anyone got any ideas what I could do next to try to get better?

Katie

Hi Katie. I think you should speak to the nurse if you have one and see if she can help to get you swapped to a different rheumatologist. People can't always be expected to 'gel' and a good patient/consultant relationship is essential for us to feel that everything possible is being done. Your consultant sounds really irritating and patronising. He's not listening to you and working with you as an equal partner. Good luck with trying to sort this out. xxx

Good for you Katie. I think sometimes when we put up with this kind of treatment we somehow reinforce the behaviour by letting them think it's OK. Well he will know now that he crossed the line. I hope you get a better rheumie next time. XXX

I changed rheumatologists (and hospitals) when the first one I went to see said 'I was too young to have arthritis', that is was 'probably just fibromyalgia', and that they couldn't do anything about it. I said that was not enough and he prescribed amitryptiline, Then he told me to sit in an armchair and never try to stand for more than ten minutes. I mentioned that as I was only in my early thirties and needed to work and care for my pre-school child, and he asked if I had a husband, with an inplication that I was silly for wanting a job.

My ESR was about 45/ 50 at that point (and I was on anti inflammatories) and I asked why I had inflammation if it wasn't RA, and he said it was because I am fat.

Fortunately the GP I had at the time said 'oh for fucks sake, there's no way you have fibro. I'm sending you to Addenbrookes for a second opinion' and they diagnosed me straight away.

If I had stuck with the first diagnosis I never would have got treatment. Sometimes you have to ask to change.

Hi Katie - I've only just caught up with this thread, and having read you first post I feel so angry for you - what an appalling treatment for you!!

This sounds so similar to how I was treated by my GP - but thank goodness my rheumy takes me seriously! I also am seronegative, but I most definitely have RA, even though it was only diagnosed by physical exam - the blood tests were all misleading at the beginning and my Xrays show no damage (yet) - so it was all down to what I said it felt like - and that's really difficult to explain to someone who doesn't want to believe you. How do we describe pain? It's a different experience for each of us - and it varies depending on how upbeat our mood is - but nevertheless we deserve the right treatment to ease that pain, stiffness and tiredness and it seems very odd that you are not on MTX as that is the first line treatment according to the NICE guidelines.

I've just finished reading your thread - and realise that you're changing rheumy's - well done for speaking out. I do so hope that you get a better const next time. It's a key lesson to learn that we have to be very assertive patients, especially when we are feeling worst. It should not be like that, but clearly not every doctor or every health area has the same standard of care or professionalism.

I read somewhere that in the future we will be able to rate our consultants and effectively create a public ranking - I'm sure that will be resisted by many in the health profession, but as a patient it will be a good thing. As you said Katie, we can forgive them having a "bad day", but if they treat all their patients badly then that should be recognised and dealt with.

Best wishes - Sylvia xx