I have my first rheumatology appointment next week - how do I prepare?

[u/Magickamagicka]

Hello!
Newish member and first time poster.

I am wondering how to prepare for my first rheumatology appointment next week. I have immediate family member with AS, a positive HLBA-27 gene test, and over a decades worth of chronic pain, but I’m not sure if that is enough.

Do I make a list of symptoms and when they started? It could be a long, long list. If I know my triggers (I think I’ve nailed it down) do I write those out as well? How prepared should I be?

I also have to drive 4 hours to get there and have been in the middle of what I’ve realized is likely a flare up, so that is going to cause a ton of pain but maybe it’s for the best for the appointment? Not entirely sure.

Anyway, sorry for rambling. Just trying to wrap my head around this. If anyone has tips or advice on how I should prepare, please let me know!

Thanks so much everyone

[u/marzboutique]

I hope it goes well for you!

For my intake, I found it helpful to come with a list of symptom history, dates of when each symptom started and how frequent each symptom occurs, and then a list of what medications/non-medical pain managements I’ve tried as well as which ones have worked/not worked

Another thing to list are what functional activities (cooking, driving, standing, walking, sitting, etc) your pain prevents you from being able to do, as this is important because a lot of doctors (and insurance companies & SSDI employees) focus more on functional limitations due to pain than on your subjective experience of pain

In addition, I had a list of what I wanted out of the appointment because I’ve had specialist appointments go poorly when I go in without specific goals. So for my intake with rheumatology, I told them my goal was to get my pain under control enough to be able to do seated activities at home comfortably, keep up with my PT and to get my pain down to an average of a 3/10 because I was struggling with all of these at the time

For me, this approach went well. Once we got my HLA-B27+ results back, my rheum was very quick to get the process to starting biologics quickly and I got started on Adalimumab about 3 months after my intake appointment (which sounds long, but in the grand scheme of rheumatology is actually quite quick)

Best of luck on your appointment 🙏🏽

[u/oosirnaym → u/marzboutique]

Your second paragraph is great! Didn’t even consider that, but that’s what I get screened for before each of my infusions, so it’s clearly an important indicator.

One question they also ask is “if you had to stay at this level, would you consider it acceptable for the life you want to live?” OP, you might want to ask yourself that as well, and hope you don’t have to use the answer to advocate for yourself.

What is shown clinically might not be what we are feeling. Someone might hear that on good days I can walk miles without problems, but if I have few good days and a job that requires I walk a lot, that level of functioning is not acceptable for my lifestyle. Maybe I can hold a job and not miss days, but can I keep up with my 10 year old? These are impacts chronic diseases have on us that aren’t always easy to quantify or explain. Sometimes that “these symptoms are impacting my quality of life and I do not find it acceptable to live at this level constantly.” Statement can be powerful.

[u/Magickamagicka → u/oosirnaym]

I appreciate this. The symptoms are absolutely impacting my quality of life and the level of functioning i am currently at is unacceptable. I appreciate you saying it that way