I posted a couple days ago about coping with my mom’s deteriorating health, and I have some questions that the doctors don’t seem to know the answers to.

My mom has had about 5 severe flares since her diagnosis, which involved excruciating pain (like 9/10), shaking, fever, chills, joint swelling, and vomiting. These episodes have her unable to move and crying out in pain for hours - I think they usually happen at night, and she says the next day she’s usually tired but on the mend, and then mostly fine the day after that. The episodes are terrifying. My mom is a person who tries to downplay health issues. She’s tried to walk off meningitis and appendicitis before, and one time fully believed that she was dying from a medication mishap and just went to her bed to die quietly without telling anyone, so when she’s so sick that she’s incoherently sobbing and yelling, and is willing to accept help from others, we’re pretty damn certain that something is wrong.

Her previous rheumatologist had nothing to say about these episodes other than “no, that’s not normal” (verbatim). She has a new rheumatologist now who’s supposed to be much better.

It’s been a couple days since the flare thing, and my mom is doing better, but still has very little appetite, bad pain and swelling, and severe fatigue. She can’t stay awake for very long at all. So she called her new rheumatologist, who said that these are not regular RA flare ups, and she should call her PCP because she might have an infection. She said that fevers are not a normal response to RA, which surprised me because I had thought that wasn’t a terribly uncommon symptom. At any rate, it’s almost the weekend so I don’t think we’re going to get any communication for a few more days at least.

Because the episodes are always very similar and feature joint pain and swelling as a primary symptom, I don’t believe each incident is a separate, isolated infection of some kind. Nor do I believe that it’s just a normal part of RA.

So my question is this: has anyone else had similar flare ups? If you did, how did you address these with your care team?

Another question: what do you do when you suspect doctors aren’t really understanding what a loved one is trying to say?

Thanks everyone for your input, I hope you’re all feeling well right now.