The Chronic Pain Game

A day in the life of blog, written by someone with Polyarteritis Nodosa, Fibromyalgia, Adrenal Insufficiency, Stills Disease & more. 34 years of experience. Giving a safe place and platform for others to communicate and seek advice/help in dealing with these and similar conditions. My name is Rosie & I'm very friendly. If I follow you it'll be from my main account 'whiskeyoverwine'.

[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]

WAIT A DAMN MINUTE, could this be MCAS?! 😅

I put aside the itchiness as psoriasis.

I put aside gastrointestinal as gastroparesis.

I put aside the fatigue as, well, everything else.

I noticed more allergy related symptoms since I stopped taking nytol nightly, but have ALWAYS had minor allergy symptoms (have also previously had anaphylaxis but that was to an infusion). I have reactions to food, brushed off as other things. I have asthma, which is super hit and miss, frequent breathlessness that doesn't feel asthmatic in nature. Am I having a lightbulb moment here haha.

[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!

[sourvape-deactivated20251109]

I’m functioning. But like… in a haunted house kind of way.

[thechronicpaingame]

How're all my UK pals doing right now? We hanging on? Benefits announcements sure are making it hard to 🙃 get emailing your MPs, tell them your stories, ask them if they can look you in the face after today's announcements.

[thechronicpaingame]

Turns out my metoclopramide (reglan) side effect was (is) this with an added panic attack on top. (I'm 24 hours no dose and still having symptoms of this this evening).

Any and all dopamine antagonists going on my allergy list you best NEVER give me this shit again. What are you even antagonising my dopamine for it's already pissed off.

[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]

POTS fam help me out here before I self implode. Was given ivabradine to start today, but when I've got home and had a look at contraindicated drugs (I was checking for my antibiotics) it came up with ondanestron (zofran) being a no no? Now it's not on the actual leaflet that came with the ivabradine but anything you look at online says not to be taken together. So is anyone doing this? I really wanna start this med so bad.

[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]

Has everyone seen the latest fibromyalgia research? We're almost at the final conclusion of the "is this autoimmune" saga! Very interesting, very good news all round. But also, with all of this present why it hasn't been labelled sooner is beyond me.

[spinningininfinity]

@thechronicpaingame do you have a link?

[thechronicpaingame]

https://www.jci.org/articles/view/144201

Link to the study for all interested 🥰 if you have a little Google though there's plenty of places that explain the study in layman's terms if needed.

[thechronicpaingame]

Has everyone seen the latest fibromyalgia research? We're almost at the final conclusion of the "is this autoimmune" saga! Very interesting, very good news all round. But also, with all of this present why it hasn't been labelled sooner is beyond me.

[thechronicpaingame]

Woke up absolutely raging today. Checked the calendar and what do you know, it's the start of my PMDD week. A benefit to living alone is I can hunker down in these weeks and just not talk to other humans.

[thechronicpaingame]

So sorry to my US friends, specifically my disabled US friends who aren't eligible to emigrate with news of Trump's win. My trans friends, my black friends, my gay friends and honestly just women in general. I am so heartbroken for so many people today. I don't ever really talk politics on here (just because it's not a political blog) but I think I should firmly acknowledge my position in these times. This is forever a safe space for everyone.

I think people in the UK feel shocked, but also I think it's entirely naive to believe we're not headed in the same direction.

Just fucking sucks huh.

[thechronicpaingame]

Ta daaaaa. I still think it's more likely cEDS but they didn't think it was worth sending me for genetics (🙄) but it answers some questions for sure.

Now just have to deal with the added grief (again) that things are not going to get better. I don't know why I have so much trouble with accepting how my life is but honestly I really struggle in that regard. I think I just wanna be able to work and buy a little house for me and my dog but even that is not a reality in my world. I dunno. Ranting.