Fear of rheumatoid arthritis and I have a legitimate reason to be afraid this time.

[Modestaustin811]

Hello everyone.
29 year old male here.

I've battled with health anxiety for quite some time. I've even thought I had or was getting rheumatoid arthritis in the past. My grandfather had it really really bad and he was constantly in pain. Seeing him as I grew up may be even the reason, or one of the reasons I have health anxiety now.
Fast forward to the present. In Mid november I came down with a flu bug that ultimately became pneumonia. I was really sick. It lasted a very long time, over a month. I was admitted to the hospital on december 19th and they asked for my families history, and I told them about the Rheumatoid Arthritis connection. They tested me for a bunch of stuff, including RA. I ended up getting discharged as they found out the reason I wasn't getting better was that I actually came down with the flu AGAIN on top of the pneumonia.
Since then I've gotten quite a deal better. I'm still not 100% but it's mostly resolved. You can check your test results online at the hospital I was at and this is where my fears kicked in. I tested positive for one of the Rheumatoid arthritis tests. It's called an Anti-CCP test. I tested lightly positive for this. It's HIGHLY SPECIFIC for Rheumatoid arthritis. Like you don't testp positive for this unless you have it, or you'll get in the future. It can come up years before RA hits.
They wrote about it in my discharge.





Positive anti-CCP: He does not have any symptoms of rheumatoid arthritis, and we note that his rheumatoid factor was negative. There are reports of false positive anti-CCPs with infection, and given that he had a recent infection, we have not yet repeated it, but would consider repeating it at his next appointment to ensure that it resolves.



Since seeing the positive test I've been freaking out. I feel severely fatigued during the day. I'm noticing things about my joints cramping up. I feel hot a lot. I honestly think I'm developing RA. They're going to retest it in a couple weeks, but I don't know if I can wait that long. If I test positive again they'll probably refer me to Rheumatologist which can be an even longer wait. I'm seeing my life flash before my eyes where I'm severely disabled and unable to do the things I want to do. I'm starting a new job soon. This is a nightmare.
Am I overreacting?

[Sparky16]

Yes, I think you're overreacting. You were very sick with both influenza and pneumonia at the time when this test was done, and even the report you saw acknowledges that this can throw off the result. When I was about your age I had a very bad case of the flu, and for months afterward I got tired easily and my legs would ache in the afternoons and evenings. They tested my RF, which was slightly elevated. (Not the same test I know, but stay with me here.) But after I saw the rheumatologist, he said I had a post viral syndrome, kind of like fibromyalgia. He sent me for PT, and with that and some more rest I got better over the following months. The flu can take a lot out of you.

Edited to add that this is why I hate patient portals and do not allow my doctors to set them up for me. They provide results with no context from your doctor.

[nomorepanic]

It doesn't say you have it though and needs retesting once the infection has gone so I think you are jumping to the wrong conclusion here.

[AntsyVee]

And even if you are diagnosed with RA one day, that's not the end of the world either. Many people live full lives with autoimmune diseases now. It's not the same diagnosis it was 20 or 30 years ago.

[Modestaustin811]

It's highly specific test for RA. People don't just test positive for it. And if it was the pneumonia that caused the positive test, that would be incredibly rare. I've read a ton on this since seeing the report. I'm hopefully getting in with my family doctor this week where we can talk about it.

I know RA is treatable nowadays, but people still struggle with this illness every day. I'm starting a new job and I'm afraid of all the different medications. I don't have any joint pain at the moment so that's my only saving grace. I don't think I've been sleeping great though since worrying about this. I also didn't test that high for it, at least not as high as I've seen others test. I don't think I can calm down till I get this test again...


Ughhhh my brain. Why am I like this?

[ankietyjoe]

Ughhhh my brain. Why am I like this?

Probably because you're constantly reading about stuff you don't have OR medically understand online.

[ErinKC]

You say that you don't test positive unless you have it, but the doctor's notes mention a specific situation in which you can test positive if you don't have it, and you were in that situation.

[Modestaustin811]

You say that you don't test positive unless you have it, but the doctor's notes mention a specific situation in which you can test positive if you don't have it, and you were in that situation.

I've scoured the internet (literally spent hours), and I haven't seen anything that says that. I think they may have it misconstrued with RF. But also they're doctors and I'm not.

Everything that i'm reading says you don't test positive for this willy nilly.

My anxiety is very ramped up because of this. I don't feel well. I'm seeing a reality where my girlfriend leaves me, i lose my career, I have to move back home. The thought of it is consuming me.

[nomorepanic]

This is called catastrophizing which is what you are doing so calm down and see what happens.

[ErinKC]

I'm seeing a reality where my girlfriend leaves me, i lose my career, I have to move back home. The thought of it is consuming me.

That is your anxiety putting irrational thoughts in your head. One of my closest friends has RA. She lives a completely normal life managing her symptoms with medication and lifestyle. She's had two children since her diagnosis, works full time, etc... Why would any of those things happen to you?

[jules321]

I know several people with RA, all who live normal lives. So even if you did receive an RA diagnosis, it is manageable. Deep breaths, and don't let the anxiety monster tell you lies.

[Sparky16]

I've scoured the internet (literally spent hours), and I haven't seen anything that says that. I think they may have it misconstrued with RF. But also they're doctors and I'm not.

Everything that i'm reading says you don't test positive for this willy nilly.


I spent a few minutes this morning reading about this test before I ran my mouth, and I'm reading in several places that false positives are possible. I think the note in your file is completely correct, and you shouldn't hit the panic button on a test that was done so soon after a serious illness.