First rheumatology appointment - what/how much to ask/tell?

[roughtyping]

Hi,

I've got an appointment with a rheum doctor at the hospital on Monday. I've been back and forth to my GP for years with joint problems - it will be ok for a few days then will flare up and it gets to the point where I am constantly sore and uncomfortable. Knees/shoulders lock every so often. All of my joints crack, often on their own e.g. when I'm standing up from sitting my back cracks. This has happened for years - since I was a teenager (now 26). More recently the lower part of my back needs to crack, except it doesn't sound like a crack, more like a dull thud! :(

I've been speaking to GPs at my practice about this for a long time with not very much success. One who I spoke to about my knees locking insisted that this happens with "age" (at the time, I was 24) and it is just something that happens to everyone. She then told me my only option is to take paracetemol every day, ibuprofen if it's a bad day. Other doctors have been similar - I don't "need" to crack my back, etc. Very much downplayed any discomfort or pain and insisted that I should basically "get on with it".

I have had a couple of sympathetic doctors - one tested me for rheumatoid arthritis (negative) and suggested I self-refer to physio, which I did with limited success - the exercises they suggested were ones I already did (basically yoga/pilates type gentle stretches), and they gave me a knee & wrist support,w hich help. The most recent doctor - the one who referred me - actually made me cry, just because he took me seriously. He suggested that I am hypermobile although he said he was not an expert (I've looked it up myself in the past and I am sure I'm hypermobile). He has explained that the care a doctor can give for this is limited but that they might be able to suggest ways to make it more manageable.

I'm just wondering what the best things to tell the doctor are, as obviously I will only have a limited time with them. I don't want to go in and make a huge big deal of it as I feel a bit like I've been burned in the past by trying to tell the GP how sore it can be, but I don't want to downplay it either. What sort of questions should I be asking? And realistically, what is there, if anything, a doctor can do to make things a bit more comfortable?

If you've read this far, thank you and well done! Sorry for such a long OP. Any advice is really appreciated.

I always go blank and either forget everything or remember only the least important thing! So now I write a concise list of what I want to say. It could be a list of first symptoms ( such as pain in knees) followed by a list of questions. I also write a potted history because I know I will forget the names of medicines or relevant dates.

A rheumatologist will ask you all of the questions they need to form an opinion. Don't hold back when describing your symptoms. I agree with magso that taking a history with dates and a list of your own questions is helpful. When I went the appointment was 45 minutes long, so much less time pressured than a GP appointment. If hypermobility is the issue there are specialist rheumatologists who deal with this and specialist rehab programmes to address the issues this poses. Hope it goes well.

Thank you so much for the replies. Will write down some info tomorrow so I remember - I'm terribly forgetful at the best of times. e.g. I meant to write in my OP that I have a fairly active job (I teach 5 & 6 year olds) which involves lots of bending/picking up/sitting down on the floor etc. Argh!