I don’t get it. I really don’t.
I have seronegative rheumatoid arthritis. My rheumatoid factor is negative, and so are my anti-CCP antibodies. My ESR and CRP has always been elevated, but never in great amounts. My left knee has a permanent effusion, there are very slight deformities in my fingers and toes, and crepitus in my elbows and knees . But my RA is never supposed to be so refractory, so painful and so adamant. Seronegative RA should never be like that.
I am equally as puzzled as my rheumy. And i guess i should’ve realised that she has been giving me the benefit of doubt because i don’t seem to be displaying the clinical signs and symptoms of active disease activity. There is nothing to base my treatment on, except for the elevated ESR, the slight effusions, and my words. My words that seemed to point that my disease isn’t well-managed.
I don’t get it. It affects almost every synovial joint in my body. But there isn’t as much swelling as there is pain. So much pain, yet no swelling. Are you kidding me? It makes me look like a fucking liar, a drug seeker, or a nutcase. Either way, there has to be a lot of trust between me and my rheumy for her to take me that seriously.
I’ve never really stayed in remission for an extended period of time. I have tried triple-DMARD therapy. I’ve tried adding an NSAID to my double-DMARD therapy. I’ve tried the biologic etanercept. I’ve tried everything under the sun- topical NSAIDs, analgesics like tramadol and pethidine, steroid shots, muscle relaxants, warmth and what not. Nothing has worked well enough.
Am i fucking mental, or what?
I know that i am going to be told to go back to prednisolone, because it works best in an acute flare. But again i will say that i am very adamant. Because what seemed to be a short-term treatment for the inflammation became a year-long treatment on 20mg of prednisolone in my first year of diagnosis. It’s so easy to be reliant on it, yet so difficult to wean and taper off it. Plus the side effects are less than desirable. So perhaps you could say that i fucking deserve to be in pain because i am too vain(because damn it they make you fat). But that’s besides the point.
I don’t want to live my life in pain, trying to find out what works, and what doesn’t. I don’t want to spend months trying to find out if DMARDs work at certain doses, and then another few more months titrating it up. I don’t want to spend time waiting for another episode of transaminitis so that everything has to be stopped, and then starting all over again. I don’t want to waste time trying to convince doctors that i am truly in pain, because they don’t always believe me, and because i literally have to beg them to give me something to alleviate the pain. There is never a period where things stayed constant. Everything keeps changing.
And maybe the pain is really all in my head. But i’ve been taking so much anti-depressants. I should be pain-free by now, if anything. So is the pain all in my head? Or is it as real as i deem it to be?
I’m sick and tired of it all. I really am.
Right now, very honestly, i am just waiting for transaminitis to occur. 15mg of MTX together with more daily medications than ever for such a long stretch of time? Smells like transaminitis is coming along the way.
I just don’t get why it is so difficult to be pain-free. Really. Is it too much to ask for?
I didn’t get my sulfasalazine and triamcinolone shots as promised. I didn’t even get the call that was promised. How am i gonna trust that they’ll intervene when i have an acute flare?
I guess it’ll just be me and RA pain till the end of March. In the meantime, i’ll pop as much tramadol, diclofenac and prednisolone as i can to tide me through and keep me sane.