Preparing for Appointment

Molly28

Hi all,

I finally have my first rheumatology appointment coming up. I'm wondering if anyone has any advice to help me prepare for this appointment?

The reason I ask is that, although i'm so pleased to finally have the appointment, I worry that after so long of having pain what if I feel the way I've felt with my gp, not listened to, not taken seriously. I get pain and swelling almost everyday just now but there are the odd days I don't. What if I've no swelling on the day and I'm not taken seriously. Is the rheumatologist likely to look at photos I have? My blood results are OK so I'm really having to go on my own description of the pain fatigue, stiffness etc and photos, if I have no swelling on the day. I've found myself obsessing over it in my mind.

frogmorton

HI @Molly28

I totally get it I was the same. I had no swelling by the time i first got there too and had negative bloods etc although I had just recovered from a 6 week flare🙄

Prepare:

1. Write a list of everything which joints are affected for how long and how exactly
2. Describe the pain - is it shooting, dull, burning etc and how many out of 10 would you give the level?
3. Stiffness for how long does it last is it only in the morning?
4. How does it limit you - what can't you do? including sleeping
5. Any other symptoms - tiredness/unusual rashes/bumps/loss of appetite even.
6. What helps? Ice/heat what pain relief you have tried.
7. Any family history of inflammatory Arthritis

Now be succinct do not talk too much don't annoy them just bullet point it. I didn't have photos myself, but they will look at them definitely.

Expect to have a few tests more bloods (their tests are better so you might get a positive result this time) a chest X ray and a physical exam. If you're lucky they may offer you a depot steroid jab (in your bum!) which should help a lot and maybe start you on meds. They started me straight away that day.

If I think of anything else I'll let you know.

Best of luck and do let us know how you get on.

Toni xx

FINALLY Have you any questions? Write a list of them in case they are not all answered as you go along!

RogerBill

PatientsVoice-5.pdf

I agree with all the points @frogmorton makes. The article "Time is Precious" in this file makes similar points. It's an article I wrote for a cancer patients newsletter I edit. Having had both cancer and a hip replacement I know from first hand experience the importance of preparation in order to get the maximum benefit from appointments which are run on a tight schedule in both NHS and private hospitals.

Molly28

https://community.versusarthritis.org/discussion/comment/695048#Comment_695048

This is amazing, thank you so much. I'm going to follow all this advice. I'm glad you mentioned be succinct because I can either waffle a bit or clam up and need to stay straight on point.

Really appreciate your advice because my fear is I come out feeling disappointed that I never said what is needed to be said and I'm left living like this.

Molly28

https://community.versusarthritis.org/discussion/comment/695051#Comment_695051

Also, amazing you've offered this advice. Thank you so much. It's exactly this, the worry of not getting maximum benefit and just feeling rushed out the door, especially just now when waiting lists are huge and professionals are rushed and trying to see as many as they can.

Really appreciate this!

frogmorton

Thanks @Molly28 for your response so nice to know you've actually helped someone.

The worst thing ever is coming home and thinking "Oh no I forgot to say/ask....."

Best of luck and do let us know how you get on.

Toni x