Newbie and forthcoming appointment!

Hello,

I am writing this because I am now starting to get a bit apprehensive about my appointment with the rheumatologist on Monday 13th...... I have been waiting for 6 weeks for this appointment, I have got shoulder pain and finger pain at the moment but it is not like some of the people on here, unbearable, just a constant nag! I am only taking paracetamol but am finding that this is only just taking the edge of it now and it is waking me up. I don't seem to be having all the other symptoms that a lot of you have so I am not moaning!

I just don't know what to expect when I go to this first appointment...... Will they xray my joints? Its obvious on my hands from the swelling on the joints that something isn't right! Some days its feels like I have previously hit my fist into a brick wall and it is all bruised, then the next day it feels much better but I can't make a fist or butter a slice of bread without it hurting from the pressure. There is nothing to see in my shoulder it just hurts! The shingles appears to have gone now from that area too.

Is there anything apart from the obvious that anyone can point me to be asking? after waiting for the appointment I don't want to get home and realise that I didn't ask all the right questions. My GP has told me nothing, just that my rheumatoid levels are raised and that I need a referral.

Thank you for reading. S

23 Replies

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  • Hi there,

    my second appointment is at the end of August. The first was back in June so I'm lucky to have another so quickly (I think that is partly because the Rheumy I saw last was a locum & the new guy needs to get up to speed with all his new patients).

    Of the many things that I am hoping to squeeze into the consultation, the one that may well apply to you is a request for an MRI scan. I won't bore you with the sorry tale of my knees but I seriously kneed (get it?) to monitor how quickly damage is occurring. I have had an x-ray but everything I've read suggests that x-rays don't show what is going on as well as MRI does. Even if I didn't think any damage had been done to my joints I personally would like an MRI done to provide the basis for future monitoring. And, of course, I admit that x-rays are at least better than nothing.

    Going by blogs here, procedures for Rheumy appointments vary widely. So I think you are right to start thinking about what to expect and what to ask about.

    Hope all goes well for you on the 13th. It's great that your relatively mild symptoms are being taken seriously because hopefully you'll get the help you need to make them stay that way.

    Christina x

  • Thank you..... You would think Mri would be the norm if its the best way of seeing what's going on with your joints..... I think you have given me one of my questions ' how will you monitor damage to my joints! Good luck with your appointment S

  • Hello and welcome.Get a list written of everything comes into your head that you want an answer to. Go prepared with what you want to know. Sorry this is short and to the point,i am in a bit of pain. sylvi.xx

  • Sorry to hear that you are in pain.... And thank you ... I will start a list on my phone that way I can't get flustered on the day and forget to pick up a list on a piece of paper ... Take care S

  • Hi Newbie,

    Like Sylvi says write things down that you want to ask, hopefully you will do better than me as my consultant said she had no time for questions!

    They might want you to have x rays and blood tests and possibly a whole body bone scan, nothing scary though.

    If you have the chance take someone with you as its difficult to remember everything on your own.

    Good luck, let us know how you get on.

    Mary

  • Will do that thank you s

  • Will do Mary thanks s

  • If its your first appointment, its a really good idea to take someone along with you - they can help you remember what you wanted to ask about, as well as listen for you. Its really easy to leave and then forget completely what the rheumatologist said.

    One question I'd add to your list is whether paracetamol is the best thing to take for pain. they may well suggest that you take something like ibuprofen instead as that has more of an antiinflammatory effect.

    Some docs are quite happy to order xrays or Mri's and others only seem to do them if they really don't know whats going on. If he can see its swollen, and it feels red, and you have a strongly positive rheumatoid factor, then it might not be necessary to have an MRI (which would save a long wait for it, and save the NHS expense).

  • I have a problem with ibuprofen because of a stomach ulcer... But will be hoping they will be able to steer me right on the best option .... Thank you s

  • Hi - I've never been offered an MRI and only had one lot of x-rays over a year ago of my hands but it would have been far too early for anything to show I now know. First things first - if you do have very variable patches of visible swelling I strongly recommend that you photograph them as well as possible and take print offs to show the rheumatologist. Because RA and other inflammatory arthritis's are so variable from day to day they do need to see any sign of synovial swelling if they can.

    Each rheumatologist has their own style and at my first consultation I went with a list of questions and he appeared to be irritated and not a little baffled by them so I think it's best to keep to a very few simple ones. Although you have a raised rheumatoid factor there are other things that you may well be asked and blood tests he or she will want to take before making a diagnosis probably - especially if your symptoms are relatively mild. It's worth reading as much as you can on how RA and related conditions are diagnosed and not going in assuming that you have RA yet. For instance it's worth knowing that you can have a positive rheumatoid factor and not have RA and also a negative R Factor and have RA. There are two main inflammatory markers that indicate that the disease might be active and are usually raised if you do have inflammatory arthritis called the ESR and the CRP. It's worth knowing all this so you can understand what he or she is looking for. Knowledge is a really good thing in rheumatology because it is generally slow and diagnosis is often made through a process of elimination. Don't go in expecting to be diagnosed there and then - if you are then it's a bonus in someways (although very shocking in others) because treatment will start early. But if you're not then try to be relieved too because the drugs for RA are very powerful and potentially toxic with unpleasant side effects for many of us and it's good to make absolutely sure before you are started on them.

    Another suggestion is to record the consultation on a smart phone if you can. It's a bit sneaky but I've found listening later to my consultations - with an 8 month gap between consultations - it has really helped to be able to listen to them again for me. I asked my GP if I should take a friend but he felt it would be better if I met him on my own because it can change the dynamic to have someone else there - and actually there have been others on 3 out of 4 of my consultations anyway so there would never have been room for an additional guest of mine in the smallish hospital room!

    Oh yes and also 6 weeks is a drop in the ocean where waiting and RA stuff is concerned so be prepared to have to wait a lot longer for the next consultation - I hope you don't but sadly that's what most of us experience I'm afraid. Good luck and do come back and tell us how you get on please. Tilda x

  • Thank you tilda... That's encouraging my GP more or less intimated it was a done deal that I have ra ... Probably because in my family maybe .... I will have my fingers crossed as hard as poss! That's assuming of course I can cross them on the day without it hurting ! But that has made me feel very hopeful thanks s

  • Pleased for that. My GP did same thing as yours but I still wasn't diagnosed at my first apt - had to wait a further 4 months for a conclusive diagnosis but symptoms were masked by steroids and anti inflammatories. This at least gave me a lot of time to experiment re diet and exercise and research RA and treatments etc. But hopefully you won't be left in limbo land for long as its no fun being there really -although the diet and regular exercise have transformed me and helped immeasurably with the RA. Tilda x

  • I have a horse Tilda, and I have been unable to ride really for the last couple of months because I can't grip my reins and if he tugged me down in the shoulder I think I would have fell off with pain, plus having the shingles it put me out of action for a bit. ~So I have taken up doing a couple of miles walking about 6 in the morning to get myself moving and have swapped to a low fat better way of eating, not really dieting but I am hoping if I lose a couple of stone too it will help my symptoms of whatever it is that is giving me pain!!!! So watch this space! I am hoping that like you getting back into a regular pattern of healthy eating and exercise things will improve all round! Thanks for your comments Tilda. Sx

  • Hi newbie

    I had my first appointment on the 26th of July and was very pleased with how it went. The consultant gave my hands, feet and ankles the once over and asked a lot of questions on my symptions, medication and pain levels. He explained about ra and how I can lead an active life on the right meds and said i would be starting on mtx next week when I go back to see him on the 9th. He took blood tests and a chest X-ray and also sent me to have a steroid injection. What a great injection to have if you are offered. It started to work the day after and I have had no swelling to hands or feet since and its great to be able to wear shoes instead of flip flops and open things and get through the day at work without too much pain. Hope you feel positive like me after your appointment and please let us know how you get on. Will be thinking of you. Good luck x

  • Thank you I hope my experience is as positive as yours s

  • Hi

    I had relatively mild symptoms similar to yours for quite a while, but mine travelled around lots of different joints for several months and my GP didn't think it was RA but eventually referred me to a consultant 10 months after the first symptom. By this point I was taking anti inflammatories which kept the pain manageable. At my appointment the consultant arranged for x rays of hands, feet and chest and an anti ccp test - this came back positive and pretty much confirmed a diagnosis of RA because I've never had a lot of swelling and ESR and CRP tests always have been fairly low. I would ask if you are to have this anti CCP, because I feel that without this I wouldn't have been put on methotrexate so soon. I was also given a steroid injection at the time and found this totally got rid of the stiffness for several months.

    Hope it goes well for you and you get some treatment sorted.

    Caroline.

  • Thank you ... I have also had pain on and off in ankle and knee and that has been going on for about a year. Anyway thanks for comment and infos. It's nice people bother to reply Sx

  • i agree with cazh

    and write a few things down and ask the important ones that are of consern to you

    hope you get on better than i did

  • Doesn't sound like you had a positive experience ..... I will def write things down thanks

  • Hi Newbie55

    It sounds like you've gotten a lot of useful advice and suggestions already, but you may also find these documents useful to have a read of before your appointment. The first is from our website, 'Initial Hospital Consultation' written by a consultant rheumatologist: nras.org.uk/about_rheumatoi...

    This second link is to NHS choices 'Questions to ask': nhs.uk/NHSEngland/AboutNHSs...

    I hope things go well at your appointment. Please don't hesitate to contact our helpline on 0800 298 7650 if you'd like to speak to someone about things.

    Kind regards

    Sarah Kate

    NRAS Helpline

  • Thank you that is very helpful s

  • Hi - spooky I could have written your symptoms too. I have just had my first appointment and found it to be very helpful. Took along a urine sample, was weighed and had blood pressure taken (more of that later)

    blood tests from GP referral showed I had a high RF but the rheumatologist suggested that was not important as my other blood work only showed mildly raised inflammatory markers. Much relief!! However had a thorough going over - test of movement and spine - undressed to underwear, so obviously wear something comfy ;-)

    He suggested I had clinical signs and so had some further blood tests to get a fuller picture of what’s going on – results will take a few weeks to get back. He also explained that there are many types of arthritis and the tests etc will inform what we do next.

    The worst thing was that I had worked myself up into a worry – and my blood pressure was sky high!! The dr was very concerned over that – apparently that is more immediately damaging. I explained it was because I was worried about potential diagnosis and have had it checked by the nurse next day – back to normal. So - my advice (to self) is to not imagine a worst case scenario and get worked up ( easier said than done;-) !)

    All in all I feel better that I am being checked out and hopefully will be on the road to fix my fingers and feet.

    Hope that helps allay some fears

  • That is quite reassuring ..... thank you very much, and it sounds like we have similar symptoms! Fingers will be crossed on day if I can cross them! Again thanks, it will make me calmer on the day! Sx

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