I was diagnosed with ra January this year, have a struggling time and haven't really felt very good over these months. I seem to have been put with a different clinic nurse at the Nuffield in Oxford. She has decided that I may not have ra because of no inflammation but I have painful joints, swollen hands and fingers and certain areas of my body hurt to press. My methotrexate was reduced 6 weeks ago and my esr level has gone from 11 to 20 I was also put on anatriptaline but try knocked out and I was sleeping in the day time my gp took me off them and I'm really not coping very well, pains in my feet and legs, tingling in my legs and pains in both of the palms of my hands. I'm so tired. I'm still working full time, have to keep going but have to force myself to get out of bed. I have an appointment on 7 August at the Nuffield avian. I never thought it would be such a battle since being diagnosed and can't understand why this clinic nurse has just turned everything upside down. I feel so alone and fed up 😥Julie

Thank you Anne. I don't tend to see a consultant anymore just a clinic nurse, I have been keeping a diary. Yes I will plod on until tuesday. Julie x

Hi Julie,
Know how you feel and can empathise but also cross! Your nurse should not be handing out diagnoses willy nilly like that! Even GPs don't attempt that sort of thing. You may not have any active inflammation because the MTX is doing its job, but even if its not active then that's still not a misdiagnosis of RA! If I were you I'd insist on seeing the consultant again, It seems like your nurses are not being very helpful.
Good luck with your appointment.
Sara

Hi Julie - I'm very new to all this, having only just got a diagnosis after struggling for 3 years. All sorts of specialists and registrars poked and prodded and scanned me and they were confused until I finally saw the rheumatologist and she confirmed what I'd long suspected - so if medics find it's sometimes difficult to make a definite diagnosis, when in your case you have a confirmed diagnosis then why does a nurse think they can question it?

I've been told that I only deal with the nurses if all is basically proceeding as planned - and if there's a problem then I should ask to see the consultant. In your case, you seem to be describing problems which your consultant should really see - I know it's so tough to stand up and make a fuss when you're feeling so tired and low, but it sounds as if you need consultant's support. Can you get a friend or family member to talk to the rheumy dept with you? And maybe take someone along who can support you and back you up?

Well done for keeping a diary - it will definitely help. I also typed out a typical day starting with waking up totally exhausted and struggling to get out of bed to hobble to the loo, etc, etc. My rheumy has kept it on file and said that it was very helpful for her to read it. I also included the questions that I needed answers to - it's so easy to forget them in the rush to explain everything - and we didn't finish until I'd agreed that she'd answered them satisfactorially.

Good luck with the appointment - Sylvia

Bless you, sounds like you're in a lot of difficulty
Tbh, I wonder if it doesn't matter what the name is of the disease, but I think you have a right to be believed
Supported and cared about.
If it's not ra, it sounds like you need to know what it is
And
Most importantly
Some treatment

Hope this is resolved quickly

Jenni xx

Hi Julie

Good luck for Tuesday.
I've read what other people have put down, they are so lovely in lending their support to you!
One thing may be of use or not, have you taken any photos to show your swelling? For example when it is obvious?

I did for my bunion to show at the end of the day when it was at its most swollen.

All the best for Tuesday.
Jane
Xxx

Well it was a bit of a stressful appointment, saw a different clinic nurse again and it almost felt like it was going to be another battle. She just wasn't listening to what I was saying. Had a scan done on my hands and one foot by a really nice doctor. Good news is no joint damage and cartilage and tendons are good. Had a chat with the doctor and he tested the pressure points on my body and I had 17 out 18 which is high. So from this is has diagnosed fibromyalgia with progressive ra. Now off metharexate and going on to something different. It feels like a whole weight off my brain and the doctor was so good and put the clinic nurse in her place a few times. I guess I can stay with the nras even though the fibro symptons are more than the ra. Thank you for your comments, it's been a very hard couple of weeks leading up to yesterday's appointment. Still have to have a medication trial in hopes what I go on works and dr seamore still wants to see me at his ra clinic in 6 months. Julie x

That sounds like a good outcome. At least now you know what you're up against and you can start to tackle the RA/fibromyalgia combination. Also you now feel believed and that you are not being mucked about. These illnesses are hard enough to deal with without all that. I hope you have success with your new drug and that you find effective ways of managing your pain levels. Naomi, X

Thank you again for your comments and support. Have a bit of a long road to go down with the chamge of meds but a least we know now what we are dealing with. Julie x