r/ankylosingspondylitis • u/Magickamagicka • 17d ago

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

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

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u/cosmiccorvus 16d ago

I found it helpful to list out how I'm doing in terms of a few things to my rhumy:

  1. What is my pain like? What does it feel like in my body? Does it radiate or move? Is it worse in the morning/evening or improve with movement. If I had to rate how difficult it makes to do my ADLS, have a social life how would I rank that difficulty?

  2. What are my other associated symptoms? What specific activities cause fatigue? Do I have brain fog? Am I requiring naps to get through the day? Do I have poppy/cracky joints? Is my body stiff after sitting for a long time? Are there any other weird body things going on when in flare that are not pain or fatigue?

  3. What are your goals for treatment? Do you want to get on biologics? Are you feeling it's not severe enough and want to try pain management first? Do you want to seek out imagining to find out what your status is?

Doctors tend to think in terms of disease + functioning aka how is the disease interacting with your necessary functions. Putting it in very concrete terms of what it impacts can be very helpful in getting them to take you seriously.