Friday, 7 May 2010

Onset Story

I thought I'd share my onset story. I remember when I first went on the internet searching for info on RA how interesting I found each individual explaination of what symptoms they got first - much more informative than the numerous dry medical sites and articles.

It's not been very long for me. Almost 6 months, although in a way it feels like forever. I said to a friend the other day that I felt like I was in a daze for the first 3 months.

So, November had been a super busy month for me - at the start I'd been abroad travelling, then work sent me on a business trip to London and I spent the last week of Nov staying back late and working on a deadline. Now, I don't blame the RA on being busy. I've been a lot busier and a hell of a lot more stressed in my life than I was that month. But maybe I was a bit more run down than usual, who knows? Anyway, I woke up on the 1st Dec with the middle joints of my ring and middle fingers on my right hand all swollen up. I remember thinking 'How utterly bizarre!'. Laughed it off for a couple of days - it wasn't painful, but my tendons were so swollen that I couldn't bend the fingers properly. I booked an appointment with my GP for the following Monday, fully thinking that they'd be gone by then. When they were still there by the weekend, I sat at home on Saturday afternoon, Googled my symptoms and had a nervous breakdown - I was convinced I had arthritis.

I freaked out, went into hysterics. A bit prematurely, perhaps. My friends and family thought I was over-reacting but I've never been a hypochondriac and I've always been super healthy - not an allergy, not a broken bone even. My foot and knee felt 'strange' and I knew something was really wrong with my body.
I went home for a few days and waited for the GP appointment. He took blood samples and that began the long arduous process of finding out what's wrong with me.

To cut a long story short, since then I've done a whole lot of waiting around for tests and to see a rheumatologist. I'm not a clear case, all my bloods and inflammatory markers have been negative (tested twice), all my xrays are normal and my symptoms are also quite vague and kind of come and go. I'm waiting for an ultrasound now and hopefully starting a DMARD next week - they're still deciding if I should get hydroxy, sulpha or mtx. My rheumy says I have mild sero-negative inflammatory arthritis.

I feel ok really, physically. I have no right to complain really, I am still able to function normally and take no painkillers so I am grateful, I know I'm lucky (well not as lucky as those other 24 year olds who don't have arthritis!) but I also fear that one day my luck might run out and everything can become full blown and really painful. Fear is my biggest enemy and trying to deal with the weight of the diagnosis. For me so far it's been more of a psychological journey rather than a physical one, although of course the two are linked and I do have aches every day that a 'normal' 24 year old shouldn't have and some limitations to my walking distances.

But even so, I am mentally much better than I was at first. I still worry a lot about the future - 60 more years in this body, yikes! - but I cry less. I'm learning a lot about a disease I had barely heard of, met some incredibly brave people and have made new friends through it. I'm trying to just live my life and appreciate every day that I'm still able to do the things I love. With a bit of luck, I hope to muddle through somehow.

Well that was a long bloody essay. If you're still reading, wow! Well done, you got to the end, you can go now :D


  1. I'm glad that it sounds like they were able to diagnose it relatively quickly and easily-I've read horror stories about it taking years for the dr to figure out what's going on and then having that much more damage. My journey has also been more psychological than physical too- it's a hard pill to swallow in your 20's! Hang in there- I'm glad you're blogging!

  2. sounds a lot like my last 9 months. my blood tests are negative, my x-rays and mri found nothing...i don't even swell (which makes me feel even more stupid about complaining when i read everyone else's awful stories). and i never know what to tell people i have (my doctor is treating it like ra but i don't have an official diagnosis). the hardest for me is definitely the fear of the future. especially cause i'm almost 18 and heading to college across the country next year=/ but mentally/physically things are better then they were and i'm graduating in 3 weeks!

  3. The psychological journey is the hardest part, in my opinion. But, you seem to be doing great, and seeking out an important thing on this journey: support. As sad as I am to meet you for this reason, I'm glad that you're here! I'm not getting any younger, but it is nice to meet folks in my general age bracket with RA.