listing all my whinges for the rheumatologist?

bluebell

I have my first rheumatology appointment Monday 23rd May. Knowing time will be limited and trying to get it straight in my head how to explain everything, I've ended up doing a one-pager, with a table (data, not dining) listing what hurts, what the pain is like, when it hurts and when it started. Plus a line on random other medical history stuff which may or may not be connected of course.

Do you think I should just give it to the rheumatologist then discuss the detail of anything they want to? Has anyone else done that? I feel like a total hypo listing everything, I don't want them to think I'm just weird or whining etc

stickywicket

I know many people do this sort of thing but I also know that some docs dislike it.

I think a balance has to be achieved between not forgetting important stuff at a nervous first appointment and not being so intent on saying everything potentially relevant one forgets to listen to the all-important replies.

I think I'd treat it a bit like an oral exam. Write everything down, mug up on it beforehand and then take it for reference to ensure you don't forget stuff. Better still, get a friend to do the same and go with you then he / she can nudge you if you've forgotten something.

Do listen carefully though. That's just as vital.

dreamdaisy

I think you have done exactly the right thing: you are not whinging or whining because you are explaining how you are being affected and you are not being a hypochondriac because their difficulties are, for want of a better term, 'imaginary' albeit all too real for them. Hypochondria is a mental illness whereas arthritis is not.

The first appointment is always tricky, no matter how much we plan conversations they never go as we think so a checklist is a good idea. Tell the rheumatologist you have one prepared and ask if they would prefer to read through it before you talk, if the response is negative then answer his questions as concisely as you can. You may find he wants further blood tests and / or Xrays which is normal.

I wish you well and please let us know how you get on. DD

barbara12

Hello bluebell
When I saw my first rheumy I was told to write everything I could think of down ..so along I went feeling really apprehensive , but when he started asking away I said I have made a list if its any used to you..he was thrilled and said he wished more people would do the same..I have kept the list and add to it has other things come up..good luck with it..

applerose

I've taken a list on several occasions. It was a mixture of the rheumy asking questions and then me asking questions. At the end, I read through my list to make sure I had all the answers I wanted.

bluebell

Thanks all

I really hope they do want to read it.... Mostly coz I don't wanna say it all out loud. I know that sounds daft but it feels like a longer list/more whiney when you say it, lol

Will let you know how I get on next week

stickywicket

A former member used a 'a pain map' which she kindly circulated among anyone interested. I have it in my computer but have no idea how I could share it with you. Basically, it's an A4 sheet with front and back diagrams of a body all subdivided into small squares (eg a hand has about 3 squares but her problem was ankylosing spondylitis so hands weren't much of a problem).

She had placed coloured dots on her 'maps' – red for daily pain, blue for 'most days' and pink for 'sometimes'. She used larger dots for 'big pain' areas and smaller dots for lesser pain areas. At the side she gave this key to the colours.

Above, she listed about 10 major problems at one side of the page and, at the other, a few things that could ease them, albeit temporarily.

All this info, including the 'pain maps', fitted clearly onto one side of A4 and the painful areas themselves were very clearly identifiable at a glance, thus saving time and possibly less-clear verbal explanations.

stickywicket

I shall give it a go, Sharon, but it's a big attachment so not sure about it.

bluebell

That sounds like a great idea. Above all, I found organising it into paper helped me organise it in my head. The map sounds like a great idea