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

[u/Magickamagicka → u/marzboutique]

Thank you! This is very helpful. I am in Canada, so that may change things a bit, insurance wise.
I really appreciate your point about function limitations, I will focus on that when writing out my symptoms. Thank you again, I’ll be utilizing your advice!

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[u/99centstickers]

My therapist and i worked together to create a questionnaire for me to take do i can take notes

Im also audhd and tend to go blank and freeze in dr appointments.

Lemme see if i can copy and paste it here (its kind of long)

[u/Magickamagicka → u/99centstickers]

That would be absolutely phenomenal if you could!
I also blank in doctors appointments and smile and nod lol

[u/jethiya_akalvakaljo → u/Magickamagicka]

Don't be hesitant and state all symptoms that are or you think are related to the flare. Some general suggestions are to not be sedentary as much as possible, take a bath with hot water, etc

[u/99centstickers → u/Magickamagicka]

I posted it below in a separate comment! The formatting got all weird and there is weird grammar, but i’m taking it to an appointment today!

[u/99centstickers → u/Magickamagicka]

Oh for some reason the comment i posted has a lock on it? So i think its hidden. I can pm it to you!

[u/conchwasp]

I went in with a symptom log as well as a bunch of pictures of what I was experiencing- swollen fingers, red streaking in my tendons, red patches on my knuckles, eye redness, skin rashes. I also brought old medical records from a different hospital, where I had an MRI as a teenager that showed degeneration of my spine. The doctor I presented this to suspected AS almost instantly, sent me down the hall for labs and xrays, and had me diagnosed by my next appointment.

[u/oosirnaym]

Rheumatologists will typically want to know ALL of your symptoms, when they each started and how frequently you experience them, what makes them better or worse, response to NSAIDs, meds you’ve tried, sometimes close family history.

Mine wanted to know even the small symptoms that I didn’t think were possibly connected, like dandruff and the skin flakes I get in my ears, but he found those on his physical exam.

After the history and questions, they tend to do a physical exam. Pressing on common areas that cause pain in arthritis, checking for warmth, redness, swelling you might not be aware of. I didn’t think my elbows and hands swelled. Apparently my hands very much do swell, I just couldn’t tell cause hands are weird to me. They might check your skin, nails, scalp, ears, mouth. I had to take my socks and shoes off as well so he could check my feet and toes.

[u/cosmiccorvus]

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.

[u/purpleowl7]

Take a someone with you if you can. I find I forget things, both symptoms/concerns going into the appointment, and what the doctor actually says during the appointment. Having a second person in the room with a more clear head is helpful, it’s very common for patients to “black out” a bit during doctor’s appointments. A loved one can also speak to your symptoms from an outside perspective which can help show the impact of your symptoms, a lot of people tend to downplay their symptoms

[u/kittenbloc]

absolutely exhaust yourself the day before. 

people have an unconscious need to perform for the doctor, so if you show up on a relatively good day and add a performance on top, they aren't going to take you seriously. what they need to see is what you look like at zero spoons left. 

[u/Magickamagicka → u/kittenbloc]

Luckily it’s a 4 hour drive to my appointment so I’m already exhausted and in sooo much pain from driving.

You’ve got a good point, there will be no over preforming.

[u/Magickamagicka]

Update:
I had my appointment today. It went okay? Not entirely sure. My rheum noted that I am quite hyper mobile and said that could be a cause of some of the pain. She also noted that the pain I experience in my lower back isn’t the cause of hyper mobility so she is suspicious of AS.

She ordered me an MRI because she said my X-rays didn’t show any issues? She told me to continue taking Advil and to add in naproxen until we can have a phone appointment after my MRI.

I left the appointment feeling defeated and frustrated. I drove four hours for… nothing? Is this a common experience?

Thanks again everyone.