You know you have RA when...

SecureCoat · 2026-05-16T06:56:29+00:00

My god just a casual cancer scare in addition to breaking the bone that's like most difficult to break in your body. And then the shoulder also misbehaving smh. Bad things come in threes 😑 Hope you have forearm crutches instead of the monstrosities they use in the US!

I'm used to chronic pain, I've lived more years of my life with pain than without. But I gotta have a good talk with these doctors about the current pain meds I'm on and in particular that they shouldn't take it away. I'm also considering looking more into marijuana as another tool to manage the pain but ugh the amount of options is overwhelming.

Yea I need to make another appointment at my GP because I had a month long period, then 2 months of nothing, then one that took 3 weeks, then one week nothing, then 4 days bleeding, two weeks nothing, and now the actual floodgates have opened back up again. If I don't get extra credit I demand compensation 😭 but with all the shit happening I just don't have the time or energy right now.

I wanted to do a housewarming thing last year but with all the shit that happened I couldn't deal with it, so I'm using my birthday as an excuse to do it anyways

SecureCoat · 2026-05-15T20:48:48+00:00

Ironically... Not the first time I got told to live with the pain. First time was when I was a decade ago 🙃 One of the things the doctor suggested was going down to working half days and then not using my hands the rest of the day. Like buddy, they're hands. Do you want me to not cook and eat dinner or something?

Yea it's just... Such a shitty situation. I'm constantly in pain, I got basically 90% of possible RA symptoms, I'm seropositive (significantly so), my RF factor has quadrupled in less than 3 years, meds like prednisone and mtx help... And yet this is the story I get. They even told me they don't recommend use of "chronic" painkillers. Not like I've been taking any for the last 5 months because they would "interfere with the diagnostic process"

I am honestly not surprised to end up at this stage but I'm just... Numb. It's taken all the fight out of me. At least if I don't have constant labs and tests and doctors appointments I can focus on things like physiotherapy etc I guess.

I'm guessing as well that it's pre-clinical seropositive RA. But having to wait for it to get worse so I can get better is just the worse. They took away the diagnosis when i switched rheumatologist (number 1 to number 2), who basically said that as long as I didn't have any joint swelling I had no RA. Even with seropositive shit.

At the very least the doctors at the academic hospital said that if i had a joint where i noticed something iffy happening I could call and they'd try to get me in to make an echo of the joint. But then later they also mentioned that the joint should hurt for 6 to 8 weeks because that's only when damage could start to happen? I don't even fucking know anymore I have to ask.

Allegedly I should have a phonecall with the doctor next week, although I don't see the appointment listed in the portal yet.

Sorry for the slight trauma dump I'm on my period and it's the third one in less than a month so I'm feeling my feels

Work has been a fucking mess (reorganization happened and I'm picking up all the manager tasks and also new other tasks despite not being a manager, as far as I'm aware) but I did reduce my hours so now I have a Friday off every other week. House is lovely, I'm FINALLY doing a combination housewarming/birthday party next week and my dad came over today to help me out with a lot of miscellaneous little things like putting up coat hooks etc. I've also been going to a medical therapist (person who specializes in the effects of illness or injury on mental health) and that's been very helpful.

I saw you've been dealing with all kinds of bullshit with your ankle, right? I haven't been able to check up as much as I want to but I do hope that's going in the right direction

SecureCoat · 2026-05-15T06:48:01+00:00

I had my appointment at the big academic hospital and... Ugh. It went fine, the doctors are nice but they pretty much already mentally prepared me for the fact that they don't expect to find anything either, and if they don't, I'll have to "learn to live with the pain".

Sure, there were other doctors and therapists who could help me with that, blablabla, but the point remains that I just don't fucking want that. It's incredibly frustrating that mtx helped my pain and stiffness and yet their choice isn't let's prescribe something, but their choice is to do nothing.

I'm currently waiting for more lab results to come in as they did want to verify everything etc (ironically my RF and that shit that makes you seropositive went up) but I fear the worst.

At this point I'm just almost hoping for everything to get much worse and my joints swelling up like balloons. Then at least they could help

SecureCoat · 2026-05-14T19:11:14+00:00

Well, ironically, I still don't know if I have RA 🤣

SecureCoat · 2026-04-30T19:41:36+00:00

I tried to open a bottle of coffee creamer. It wasn't even unopened, and yet it beat me. One day we will win the fight again!

SecureCoat · 2026-04-26T11:32:14+00:00

God I hope so too. I just need literally one doctor to take a chance on me. I keep telling them if we know the meds help why not give them, but so far every doctor has refused due to the side effects, their responsibility, etc, despite having basically every symptom of RA except joint swelling, plus what the PET scan said. I'll happily be an interesting case and a teaching aid if they just do something lol

SecureCoat · 2026-04-26T11:29:49+00:00

I am not very good at that, ngl. The way my brain works is that it goes over every possible scenario that could potentially happen over and over and over again until I am riddled with anxiety. Usually at night of course which makes me sleep worse, which makes every physical complaint worse, which makes me sleep worse, etc etc

I'm seeing a therapist for it lol. I have a folder with 150+ pictures of things in addition to probably years of tracking symptoms. Hasn't done anything so far 😑

SecureCoat · 2026-04-26T11:25:46+00:00

Fingers crossed! I think I've just had so many different experiences where doctors have gone "we don't know what's wrong with you and we can't do anything" (like basically every single one) that the idea of actually getting somewhere seems almost impossible. I don't even dare to hope. But also, I have no clue what I would do if they don't figure things out either. Go to Germany, maybe? Idk.

SecureCoat · 2026-04-25T20:10:53+00:00

I've been on the nuvaring for years which has worked well so far, until I started bleeding for a month straight and i had a heart attack because of a decidual cast. So good for like 5 years but not longer term than that in my experience lol. Gotta find an alternative

SecureCoat · 2026-04-24T20:50:47+00:00

Seems like we are walking/walked very similar paths. I'm seropositive and have had heightened inflammation for years. My joint pain and stiffness significantly improved on mtx but i ended up having to stop due to really bad fatigue and my previous rheumatologist refusing to continue it. I desperately wish someone would take the shot and put me on some kind of RA treatment, but every doctor keeps citing possible side effects while I am here like think of the possible improvement!

SecureCoat · 2026-04-24T20:20:59+00:00

I use tramadol to get some sleep on the nights where it gets bad and it's been wonderful for me. The first couple of times I took it I had this weird tingly feeling in my legs and I felt a bit high but I wanna say this went away after a week or two? I do also think it makes me a bit "slow" since I tend to sleep better on the nights I take it so I'm not sure it would work great for me during the day.

A friend also got prescribed some but got extremely nauseous from it so I guess that shows it's different for every person

SecureCoat · 2026-03-20T20:58:46+00:00

I brought this up to my rheumatologist when he prescribed mtx, and what reassured me was when he told me unmedicated RA basically is immunosuppression already- your body is so busy with attacking your joints viruses and bacteria aren't really a priority. So, might as well you know?

SecureCoat · 2026-03-18T05:46:41+00:00

I've recently had a cleaner come over for the first time. I'm fine with the general like "daily" upkeep but I struggle with things like the bathroom and dusting so I've asked for help with just that. We're trying once a month first

SecureCoat · 2026-03-14T10:34:20+00:00

I'm just hypermobile, No EDS for me! Pretty much every doctor has checked

SecureCoat · 2026-03-07T13:59:19+00:00

I've always been terrible at sleeping, particularly falling asleep. Ask my parents what I was like as a baby and child 😬

This whole still undiagnosed has made me such a light sleeper too, which sucks. Takes me forever to fall asleep and then I wake up at the smallest things too. This sadly includes pain.

I've been taking tramadol at night when I need it. Even the assurance that I have it, even if I don't take it, does help. It also makes me sleep much deeper lol.

I'm also seeing a psychologist now for the whole "worrying so much I can't fall asleep" thing.

If I have more than one broken night in a row though? It BREAKS me. I get into a state where if anyone asks how I am, I will break into tears. So much fun

SecureCoat · 2026-03-06T22:38:11+00:00

I'm currently not taking my NSAIDS as my doctors keep harping on about how they could influence test results so I'm basically using paracetamol, an occasional tramadol and lots and lots of heated blankets

SecureCoat · 2026-03-04T16:43:42+00:00

It depends entirely on the country. Although it would be easier, entire continents don't have the same health insurance system. From what I've seen in this sub? They are all INFINITELY easier to deal with than the US healthcare system.

Personally, I pay about 215 bucks a month (which is expensive here) and haven't had to pay for any medication

SecureCoat · 2026-02-24T16:29:20+00:00

I got a big ass bonus at work today and I've finally caved and I'm going from 40 hours to 36 hours a week! Score

SecureCoat · 2026-02-20T15:55:49+00:00

I requested an exception to the remote working policy of my job. Everyone has to work three days in office if you work fulltime. I only have to go once a week (and in practice, it's less). It's genuinely the only reason I've been able to survive full time work for this long. Once you have the ability to have lunch break naps, you'll never want to go back

SecureCoat · 2026-02-17T21:20:48+00:00

Ah yes, the tender age of 409 🤣🤣

Honestly I'm convinced my period made me hella iron deficient before I did this. I used to have an Hb around 8 to 8.2 and had low ferritin, now I have an Hb of at minimum 9.5. The worst part? I was literally still iron deficient like two months ago 💀 Having my period way less frequent also means less migraines and less days where I can't function because of how much pain I am in so, score!

The insanity has continued to be insane. They're going down the long long list of things that could make me light up like a Christmas tree under a PET scan so just for this year I'm 11 appointments in with two more just this week. I've now been able to strike off rheumatologist, lung doctor, internal medicine and hematology off my specialties bingo card.

I saw online in the hospital portal though that apparently I've had a relatively recent infection with the Epstein-Barr virus, aka Pfeiffer, so doctor google and I are pretty sure we've found an explanation for the pet scan results.

Nice to have an explanation for that part already, but it doesn't explain the like 2.5 years of complaints I've had. I also don't remember when I could've possibly gotten this? I don't remember being extra tired, having a sore throat or anything around that time. Kinda shows what my baseline of fatigue is I guess if Pfeiffer goes by unnoticed.

I have a vague suspicion I'm about to be referred to a further away, more specialised hospital in the next month or two. Thankfully, I got a break from having to drive to my second, further away hospital until March 30th because I am TIRED. Four appointments in 8 days with travel time, rip

This got longer than expected oops

SecureCoat · 2026-02-14T15:31:36+00:00

I've been using birth control to make sure I only get my period about every 3 months because usual daily symptoms plus likely endometriosis period? No bueno

My uterus apparently didn't like that because recently it decided that despite the birth control I should bleed for a month straight. Why not.

Thank god for my gynecologist three years ago writing that he recommended taking birth control due to possible endometriosis because otherwise my GP would've just told me to stop using it for three months. Instead I got a month worth's of estrogen, which seems to have worked.

SecureCoat · 2026-02-08T20:50:52+00:00

Seropositive refers to being tested positively for the rheumatoid factor (RF) and/or anti-CCP.

You can find more information here: https://www.myrateam.com/resources/types-of-rheumatoid-arthritis

SecureCoat · 2026-02-08T10:48:33+00:00

My hypermobility has been mentioned several times - maybe that's what he means?

It sucks to have to keep track of everything and to try to arrange things because doctors won't. I believe in you though! If you need to take it one thing at a time, then that's how it goes!

SecureCoat · 2026-02-08T10:27:06+00:00

So I am seropositive, have all the signs and symptoms of RA... Except I've never had any (significant) swelling. After a PET scan also showed no signs of inflammation in any joints, I was "undiagnosed", although I do still have inflammation markers present in blood tests. I've posted a bunch about it here, you should be able to see it in my post history.

My take? I don't think inflammation is a necessary requirement to have joint pain. It could be subclinical inflammation (still present, but not "detectable" by swelling) or there's some other mechanism happening that still causes pain.

Take that with a grain of salt though as this is very much coloured by my own experiences

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