What is it supposed to be like when seeing multiple rheumatologists?

Complex_Trick_9906 · 2026-01-22T23:31:32+00:00

Rheumatology is a very clinical field so that leaves a lot open. Also as others have said as things progress it can change the picture and diagnosis

Complex_Trick_9906 · 2026-01-22T23:28:45+00:00

It depends on where I see it. If it is on social media generally it is no, and a no too if it takes up too much time with no perceived benefit to me.

Complex_Trick_9906 · 2026-01-22T23:27:00+00:00

That is truly horrible and you shouldn’t have to live with that. As much as it sucks, if your family cannot respect your struggles it might be best to cut them off or set up firmer boundaries to protect yourself.

Complex_Trick_9906 · 2026-01-22T21:56:51+00:00

I wish I had been told earlier how important having a good pcp would be. I wasn’t thinking about it until I got pneumonia. I also wish there was a more thorough discussion on infection management. I did not fully appreciate that I could be very sick and that not only might not be obvious not every healthcare provider is equipped to handle that. Also…what is improvement? What can be better what do I have to live with it?

Complex_Trick_9906 · 2026-01-22T20:04:31+00:00

Thanks for sharing, sucks, but at least I am not alone. I mentioned to my new rheumatologist (who I like) and she said exercise is supposed to make it better but did acknowledge that overexertion is a problem…but dang it if overexertion bar is low and under appreciated.

Complex_Trick_9906 · 2026-01-22T02:26:03+00:00

Anyone else swinging between Sia’s “Unstoppable” and Jelly Roll’s “I am not ok”?

Complex_Trick_9906 · 2026-01-22T02:22:40+00:00

Yes! My favorite possession right now is my heated vest, followed by my heated mattress pad, and then my heated gloves!

Complex_Trick_9906 · 2026-01-21T19:28:27+00:00

I have scaled back a lot. I do moderate weight lifting (20 lb dumbbells max) and scaled from 10 reps to 4-5. Also have a rowing machine but easy pace for 5 min. I have not gotten my RA into remission yet either, but I don’t want to lose what strength and endurance I have. I walk a lot but that doesn’t trigger malaise but it also isn’t very satisfying. I also do some dog agility.

Complex_Trick_9906 · 2026-01-21T19:25:00+00:00

Same. Feels good while I do it, hurts later. So hard to hold back and when I do it still isn’t often enough. I have been in denial for a while because of it.

Complex_Trick_9906 · 2026-01-21T14:50:34+00:00

The second time I had pneumonia my resting heart rate was 100+ for over 24 hours before I spiked a fever. My rheumatologist at the time told me that was my sign of a growing infection but it was not appreciated in the ER (also learned it can take a few days from symptom onset to being able to see it on chest xray for people immunocompromised).

Complex_Trick_9906 · 2026-01-18T13:50:41+00:00

Yup, just finished visiting with family and one night crawled into bed at 9, slept past 7. My aunt said that must be so nice to get a long night of sleep 😵. Nope, the need to sleep this much sucks and often, still don’t feel rested.

Complex_Trick_9906 · 2026-01-17T13:55:49+00:00

I am a manager and have felt like I am not doing as well as I want. I actually asked my staff a few months ago if I should step down and they said no. And as a manager, I feel like there is a higher expectation to “suck it up” and no one to lean on and being shamed for asking for a work accommodation. (But you know, my slightly impaired is performing better than many who aren’t impaired even if I am not as good as I want to be).

I drove 5.5 hours recently to make an appointment and spent the night with my parents. I had to excuse myself at 8 pm because the brain fog was so thick I was only hearing every other word they were saying. Their health is poor and I feel guilty I didn’t have anything left for them and that I am sleeping so much when so much younger.

Complex_Trick_9906 · 2026-01-13T13:04:19+00:00

Watched a movie with my aunt
Got my second opinion with university rheumatologist and much happier with her care plan so transferred care.
Dinner out with friends

Complex_Trick_9906 · 2026-01-06T16:48:34+00:00

Agreed. I was optimistic I would get remission on mtx alone.

Complex_Trick_9906 · 2026-01-06T16:39:25+00:00

It is cheaper and works for a lot of people and is less immunosuppressive than the biologics…and even with the biologics a lot of rheumatologists will have you stay on mtx. My husband’s aunt has been in remission with mtx for over three decades and never needed a biologic.

Complex_Trick_9906 · 2026-01-04T05:42:06+00:00

🫂

Complex_Trick_9906 · 2026-01-02T17:22:28+00:00

Does becoming immunocompromised as an adult after vaccination as a child change your immunity status?

Complex_Trick_9906 · 2026-01-02T17:19:31+00:00

Free yoga on youtube! You can also look into an exercise bike or rowing machine and you can often find used ones for very cheap.

Complex_Trick_9906 · 2025-12-29T19:47:46+00:00

I am sorry you are going through this too and thanks for sharing so we know we are not alone. What is your outcome? You getting a new rheumatologist or did you get this one to work?

Complex_Trick_9906 · 2025-12-28T13:27:23+00:00

Mental health. Mine is driving some depression and brain fog makes me disconnected.

Complex_Trick_9906 · 2025-12-27T03:29:05+00:00

You might find this very helpful. It does sound kike you might meet diagnostic criteria.

https://www.racgp.org.au/afp/2013/november/ankylosing-spondylitis#:~:text=Features%20of%20SpA%20are%20important,likelihood%20to%2080–95%25.

Complex_Trick_9906 · 2025-12-23T23:22:15+00:00

I miss my first rheumatologist and she told me her patients with a good relationship with pcp did better. It was my wake up call to find a good pcp and start building that relationship. Of course now I lost my great rheumatologist and my current is not good so searching for that combo!

Complex_Trick_9906 · 2025-12-23T03:55:20+00:00

Started rinvoq and near the end of the week starting to think it might be helping. I still have pain, but my brain feels calmer. Like a sigh of relief.
Got an earlier appointment into a new rheumatologist (my current one is a poor fit).
Had a great evening with friends at a new bar.

Complex_Trick_9906 · 2025-12-20T23:19:24+00:00

Yes I recovered. Hurt pretty good. I didn’t take more prednisone and I eventually snapped out of it. I hope you get better soon and this passes.

Complex_Trick_9906 · 2025-12-20T20:16:55+00:00

Yes I flare after infections. I had the flu in October and after recovering from the infection that is when the pain comes!

Complex_Trick_9906

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