Just saying Hello! Newly diagnosed with RA

JennJenn
JennJenn Member Posts: 3
edited 8. Sep 2017, 06:45 in Say Hello Archive
Hello - I live in South London and found myself in pain in May this year - thought I had sprained both ankles or something - then the pain moved from joint to joint worsening as it goes along till I had pain in my hips knees, wrists, lumps of my finger joints in very fast time - after a visit to GPs and blood tests I have been told I am most likely to have Rheumatoid Arthritis and I'm waiting for my first appointment with the Rheumatologist early October. Does anyone have any tips on what I should ask - I'm completely unprepared for all this. Thanks for any advice sfl0

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hello JennJenn and welcome to the forums from the moderation team. I am very sorry to hear about your pain. It is very good news that you have already been referred to rheumatology for diagnosis and treatment. Of course you feel unprepared for all this it can be very daunting, but you have definitely come to the right place :)

    We have a great community here, who have lots of experience of arthritis who I know will make you very welcome and help in any way they can.

    Have you had time to read Arthritis Care’s information about Rheumatoid Arthritis?

    https://www.arthritiscare.org.uk/do-i-have-arthritis/a-z-of-types/65-rheumatoid-arthritis

    This information by Arthritis Research UK is specifically about your first appointment:

    http://www.arthritisresearchuk.org/arthritis-information/inflammatory-arthritis-pathway/step-three.aspx

    You sound to be an upbeat person which will certainly help :)

    I look forward to seeing you posting in future.

    Best wishes

    Ellen.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's lovely to meet you but I am sorry you have had to find us. I don't have RA and am not newly-diagnosed but all of us on here are in similar boats and can hopefully help with information (from a patient's point of view) understanding and support. My first rheumatology appointment (back in 2002) was not a positive experience but things have moved on since then.

    You have a few weeks before your appointment so it may be a good plan to start a short daily diary of what areas are affected and for how long, your tiredness levels and what helps or aggravates matters. If you have swelling on or around a joint take a picture so that when you meet the rheumatologist they are able to get a fuller picture of what is going on and how you are being affected. He / she may ask for further blood tests and / or Xrays - this is entirely normal. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Hello from me, too :D

    I have RA and have had it for so many years that my first visit to a rheumatologist would be irrelevant to you - even if I could remember it :lol:

    All DD's advice is good. I'd just add that taking someone with you is a good idea as it's another pair of ears and it's so easy to forget what's been said when we're nervous.

    I'm sorry you find you qualify to join us but, believe me, this is a good place to be for anyone with arthritis. We try to help and encourage and there's usually someone who has already experienced whatever it is that is currently bothering us.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • frogmorton
    frogmorton Member Posts: 29,332
    edited 30. Nov -1, 00:00
    Hello there and welcome from me too :)

    I remember my first apt. I took my husband to back me up and remember things :wink:

    I had an examination where trousers!!. A steroid injection in my bum :shock: :oops: a chest Xray and was prescribed a DMARD (Disease modifying anti rheumatic drug) as well as a COX2 anti-inflammatory (easier on the stomach) and amitriptyline to help relax muscles.

    I had taken a short list of what happened to me, for how long and when. How painful t was/is and what it stopped me form being able to do.

    I hope you get on well

    Love

    Toni xxx
  • Thunderstorm
    Thunderstorm Member Posts: 3
    edited 30. Nov -1, 00:00
    Hello,

    I have a similar situation and live in West London. During your first visit your consultant will assess you with a physical examination to establish how many joints are inflamed/damaged. You will then have a blood test, an xray, urine sample and a chat about your medical history.

    I didn't ask any question as I was too shocked to hear I have RA. I was left speechless.

    The consultants are really helpful and will give you plenty of leaflets to read about how to manage the condition.
    Any other question just ask sfl2
  • JennJenn
    JennJenn Member Posts: 3
    edited 30. Nov -1, 00:00
    Thank you so much for all this advise - this is a big help - you have no idea how helpful.
    Thank you all xxxx sfl2