RA - Early stage or false positive
Posted , 2 users are following.
Hello guys,
I haven't been diagnosed with RA but hoping that some of you, based on your experiences, can offer some insight here.
I went to see a dr bc I was getting these intense episodes of fatigue. When I say intense, I mean like I could feel it coming. There's actually a start and end to them. I cant talk - I need to lie down immediately. I don't wake up tired. When I lie down for 30 mins it goes away.
I do not have any other symptom. I went to this new Dr (which now I regret) who ordered all these tests (CRP and RA). Everything is normal but my anti cpp was slightly positive. Im Canadian so for this lab it must be less than 3 to be normal. Mine was 3.9. She diagnosed me with RA and that I am in the early stages (pre clinical) and said "dont worry it won't kill you". How comforting.
I am 36 years old. No one has RA. I got so mad at her - in my mind I cursed her. She referred me to a Rheumatologist and says I have to wait 6 months for an appointment.
Bc I have health anxiety and panic attacks since I was a child - (I still get panic attacks every morning) this has triggered this obsession with my health FULL FORCE. On the day of the appointment, I spent 6 hours reading about RA (journals, forums, science websites). Now its 2 hours every day. I am a nervous mess. I can't sleep (actually that was the second issue I was having - severe insomnia and now with this news, it has worsen it). Online is so negative - it seems like this is my future and it's accurate (96%) and aggressive.
I am so upset. Im like whats the point - of working, of trying to find a boyfriend, of caring how I look if Im going to be disabled in a few years.
Its been almost a week since this Dr told me the news. Just so upset
0 likes, 1 reply
blair97497 fernie
Posted
Hi Fernie. I am sorry for you. I am also sorry that Patient seems to have broken its discussion group notifications, so it is just by chance I looked on here and saw what is now quite an old cry for help.
I sympathise with this period of distress you're in. I think it is natural to want to try to understand and look for information. Sadly there's a lot of garbage to be sifted through, as well as lots of reliable info. You really have to read amateur "advice" with a sceptical mind. There is unfortunately nothing to stop unbalanced promotion of unscientific junk.
Not sure about Canada's referral system - I'm in New Zealand. My initial specialist referral on our public health system required a 6 week wait and that was bad enough. I have been "seeing" my rheumatologist (which means about once a year) since 2017, and can contact a specialist nurse if I have concerns. I say "seeing" as my last consultation was by phone due to pandemic restrictions.
From my own experience, that period of a huge learning curve about "what is RA?" and wondering what is in your future, is terrible. Words like "chronic" and "incurable" are not what anyone wants to consider for themselves. For me, my onset involved mystery fatigue too - so I was interested to read your experience. But then mine progressed to stiffness and random joint pain. Then within months progressed to bad pain, primarily hands and feet but also knees, elbows, even up to shoulders. At that stage a doctor clicked, got tests that showed strong positives, and referred me to a rheumatologist (and then the wait...).
It was a really awful, absolutely depressing time in my life. I often wondered what would become of me, and if this was my future. And did I want a future like that...
However please try not to let your distressed speculation go beyond what you are currently experiencing. Treatment will change things, and there are quite a few options to try in order to find a treatment that is effective.
The whole thing with RA is that each of our experiences is really varied. And not just that, but our particular response to the various treatments available vary too.
When my state initially grew bad, steroid treatment helped. That's not a safe long-term option. It was tapered off as I built up on longer term drugs. Again, a tough period, as I had to have those methodically introduced and any reaction countered. So for me, Methotrexate tablets made me feel nauseous and gave me diarrhoea. Thankfully I was switched to self administered subcutaneous injections, which pretty much solved that. I am also on hydroxychloroquine - which for me seems completely fine. I was briefly put on sulfasalazine, which again made me feel unwell and quite quickly I developed petechia (pinprick rash) on my feet/lower legs... so I was judged allergic and that was dropped.
And so the story goes - for me. But all the stories are a bit unique, and yours will be too. With treatment my symptoms have almost completely retreated. A couple of times they have to a degree reappeared, which pulls me back a bit. In between, I have to remember to put in effort to maintain fitness and strength. If I get a knock back from RA, I am then at a better point to build up again. (When I can't take pressure on my hands and feet, I switch to aqua-jogging, which - again - works for me).
This change to your world might well preoccupy you for quite a while. I guess our lives just change. I have found that difficult, and I expect most people would.
One thing is that you have to be a strong advocate for yourself. So if you change, don't let that 6 month referral restrict you. You will need to push your message, or the system won't know that they need to move things along more quickly for you.