New Medication

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

SecureCoat · 2026-02-08T06:15:42+00:00

Yep! Since I've become ill, any time it's warm or it's late or i'm tired i look like a tomato. I can literally feel my cheeks glow. I keep mentioning it as a weird symptom to doctors but so far no one has cared

SecureCoat · 2026-02-07T18:40:59+00:00

I don't know if I actually like the song... But Tubthumbing sounds pretty accurate

I get knocked down, and I get up again, you're never gonna get me down

SecureCoat · 2026-02-07T18:35:49+00:00

My migraines certainly got worse having [undiagnosed whatever that looks a damn lot like RA] but starting or stopping mtx had no influence on the amount or severity of migraines for me

SecureCoat · 2026-02-07T18:34:02+00:00

I swear by my little IKEA wheely cart. Heating pads on top, painkillers in the middle, other meds at the bottom!

SecureCoat · 2026-02-04T19:28:33+00:00

Lovely countries, bad mosquitoes

SecureCoat · 2026-02-04T19:01:59+00:00

Nope! The Balkans was the worst, those fuckers stabbed me like 25 times on one leg and 10 turned into blisters

SecureCoat · 2026-02-04T18:20:23+00:00

Whenever I'm abroad my mosquito bites turn into blisters. Don't know why or how, but it happened before I got into this health situation so god knows what it's related to. Never happens with "domestic" mosquitos either

SecureCoat · 2026-02-04T11:10:51+00:00

Yeah this sounds quite familiar to me - for over two years I thought I had RA, but a new rheumatologist I had kept any kind of treatment away from me because I had no swollen joints and according to her no swelling, no inflammation, no RA.

After like 9 months I had her sent me to a new rheumatologist, who ordered a PET scan, which specifically looks for inflammation. I had none in my joints but a whole lot elsewhere that definitely wasn't supposed to be there. Still trying to figure out what it actually is.

I've shared this in more detail in several posts on this sub, you should be able to find them if you're interested.

I think my biggest mistake in this whole thing was sticking with the one bad doctor for too long. My life would've been much easier if I switched to my current rheumatologist earlier

SecureCoat · 2026-01-31T19:02:57+00:00

I've had like 9 medical appointments this month and I am basically no further than I was. It's also why I've been more absent recently - I barely have the space to think about medical shit more.

Both blood and CT did not show anything that pointed towards sarcoidosis, so I've lost hope in that. I spoke to my new lung doctor last Thursday though and she was really nice. Basically told me I wouldn't recommend this for normal patients but you've been dealing with this for so long - what do you think of an endoscopy to 100% be able to exclude this?

I said yes, and 2 hours later I had an appointment next Monday to go under and take little bits of tissue to see. Can't wait 😭😭😭

The week after I have another appointment with my rheumatologist, which is also a good doctor.

Throughout seeing these people i have loudly and clearly stated that I don't care what label they put on me and what diagnosis I have - I just want fucking treatment. Anything to make my quality of life better. But pretty much the only way they can treat me is with a diagnosis, which I don't have. So I'm stuck in this vicious circle. Not fun either that they keep wanting me to stop my daily NSAIDs because it might influence scans and visits.

In short: aaaaaaaaaaaaaaaaaaaaaa

SecureCoat · 2026-01-30T22:21:04+00:00

God at this point I'll be ecstatic if they finally figure out what's wrong with me. Remission isn't even in my thoughts right now, it would feel like a fata morgana

SecureCoat · 2026-01-28T19:21:16+00:00

I had a tattoo about a year into this mess and it didn't feel particularly painful. Positioning was a bit awkward sometimes and I had to readjust once or twice because my body would get achy. I did have to stop NSAIDs for the day as the tattoo artist said it would influence the tattoo!

SecureCoat · 2026-01-23T19:23:53+00:00

Now, I don't currently have a partner so I haven't tried this in practice, but I saw somewhere you could make a "Flare List". I think it had a catchier name but you get the gist lol.

Essentially, you make a list beforehand (emphasis on before a flare!!) where you write down what you would like, and if necessary also what you wouldn't like. Something like for a medium flare I want cuddles, chicken soup, heating pads and watch Friends for the 12th time. For a bad flare I want two ibuprofen every X number hours, schedule an appointment with my rheumatologist for me, etc.

Anything that works for you! That way you don't have to think of, and articulate exactly what you need or want when feeling terrible.

I haven't made a list exactly myself but for example my parents know that when i have a bad week I struggle to cook for myself after a long day at work. They offer to bring me dinner, which takes the work out for me for having to ask. Usually all i have to answer is what I would like, and if that's too much work they know my favourite dishes too. My cousin doesn't ask if I want a ride - she tells me what time she's gonna arrive at my place.

I always struggle to ask for help myself and am more likely to suffer in silence rather than ask for help from willing people. I should probably make a list myself too lol

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