#polyarteritis nodosa

[thechronicpaingame]

Hi friends. I'm STILL having daily fevers (up to 39.3), still no answers - and it'll be 2 years in march.

Bloods still normal, infection panel normal, ANA normal (but I will come back to this in a moment), petct only showed inflammation in my colon which I'm now having a colonoscopy for but generally no reason for the fevers found.

Now, my ANA is normal, but I am having daily facial flushing / rash. It feels like burning, hot to touch, makes my eyes feel hot, and personally I think it could possibly be a malar rash (I'll include a photo). Never affects my nasolabial folds and can be present even without a high fever.

I'm basically still just at a complete loss at this point. I don't know which speciality to turn to, because nothing has pointed us in any direction.

The only thing I can think to do right now is reduce my steroids down (I'm only on 6mg daily for adrenal insufficiency) but I really believe even that could be masking something so the hope is to reduce, and kind of kickstart a flare of whatever this is so it shows up somewhere more.

Welcome to all ideas, information, anything!

[thechronicpaingame]

I saw my rheumatologist the other week and boy is she on the ball (a nice change in pace from my usual experience with doctors). I told her about the fevers, and I've had a bunch of specialised bloods (all normal because why wouldn't they be? 🙄) and now waiting for a pet-ct scan beginning of Jan. I feel absolutely insane, because how on earth can I be having daily high fevers and NOTHING showing up in my bloods?! There simply HAS to be a reason for them SURELY.

I've even taken my thermometer to my GP to check it was reading the same as theirs, tested it several times on multiple different people, and yep, all working correctly. So whilst logically I know I'm not going mad, having no reason for them makes me feel crazy.

If the scan doesn't show anything I'm going to have a big cry, and then just accept my life with fevers I guess. Because I really don't know who or where to go to next.

I really through lupus could be on the cards symptom wise but ANA negative (I know that doesn't write it off completely just yet but felt like a blow).

Despite the feeling absolutely awful every day, which I'm very much just used to, my main concern is how the hell do I tell if I have a fever ever again when I read as having one 24/7 🤷🏻‍♀️ surely that's like, super dangerous to have fevers written off entirely as symptoms forever?

[thechronicpaingame]

Waking up with a sore throat - is it a virus? Or is my year about to end on a high with a stills disease flareup. Tune in! We'll find out real soon.

[thechronicpaingame]

Coming back here to lay out the fevers and see if anyone has any ideas!

Ongoing almost daily fevers, averaging around 38.3 for over a year. Routine bloods have been normal almost the entire time. Already have diagnosis of stills disease & polyarteritis nodosa but my CRP would be highly raised with flares of those.

I have EDS (hEDS current diagnosis but most likely classical), POTS, gastroparesis, fibromyalgia / ME / CFS, adrenal insufficiency.

Had a full run of infectious disease bloods, all absolutely fine.

Have embedded uti but up until this started last year no fever with this outside kidney infection / sepsis (and this is ongoing for many years now).

Looked heavily into psychogenic fevers however I average at a high fever, not a low grade (over this weekend alone reaching 38.9) no new acute stress, definitely chronic stress however.

Does anyone with autonomic dysfunction have anything like this? It throws me off that they're higher not low grade. ChatGPT (I know I hate myself for using it but I'm at a complete loss) says autonomic / neurogenic fevers. Which is something I'd never heard of before.

Anyways, any more info needed let me know. I need House asap 😂

[thechronicpaingame]

Just popping on here to say I am a year and a half into daily fevers and still no answers 🙃 I had a GP appt today where I finally went and basically said I am not coping with my daily management anymore (haven't been for a long time now). Has anyone been to someone on Harley street in London that deals specifically with chronic fatigue? I am VERY interested in talking to you if so!

[thechronicpaingame]

Any of my metoclopramide homies also have intense anxiety / panic attacks with it?

I asked a GP facebook group and yep, known side effect. I've never known anything like it it is truly miserable.

[thechronicpaingame]

So in a month or two it is a year of daily fevers and still no one can tell me why (lymphoma ruled out, my normal rheumatological stuff ruled out, infection ruled out). Bloods are mostly normal. Anyone have any ideas?

[thechronicpaingame]

Gastroparesis said a big fuck you to me tonight and I am in so much pain. Usually I have a lot of discomfort but little pain but tonight is wild.