Happy Word Arthritis Day everyone!

October 12, 2011 at 9:39 am | Posted in rheumatoid arthritis (RA) | 4 Comments

Is that an oxymoron? I think it might be!

Anyway, the folk over at IAAM have asked us to write about the onset of our RA, so here goes.

Well … erm … actually … I don’t really know when it started. I know when I got diagnosed, but that’s not entirely the same thing. I was 39 and my general health was fairly ‘carp’ at the time: I had fibroids which were giving me terrible problems, and I felt tired all the time, and sometimes when I got up in the morning I felt like I’d been running a marathon in the night. However, given my usual sleep patterns, hubby suggested I probably had! The thing is that even before that, for years and years and years, I’d had periods of feeling ‘generally carp’ – tiredness, achyness, and years of sinusitis culminating in a sinus operation in 2005 which actually didn’t do much good. Interestingly, since I’ve been permanently on anti-inflamatories for the RA, the sinuses are much better than they used to be … but that’s another story.

I really enjoy country walks too, and I had been getting pains in my feet that would last and last after the walk was finished. People always talk about ‘taking the weight off your feet’ and it was only when I finally got RA treatment that I realised what they meant. The phrase used to puzzle me because I would sit down and they would STILL hurt for hours. I thought that was the same for everyone. It’s only now that I realise that that was part of the whole RA thing. Now, in a good phase, if I walk for ages and get a slight ache in my feet, I sit down and it goes away. (Of course in a bad phase they just hurt most of the time, but ce la vie!)

I was just living with all this, and having a moan to friends and hubby now and again, but since I’d had this going on for years, and since I’d seen a specialist in around 2001, who’d told me I was depressed, which couldn’t have been further from the truth, I’d given up on doctors!

But then I started getting these pains in my wrists. Now THAT was something to go to the doctor about – I run a small business doing transcriptions, and transcriptions are, when you get down to the basics, typing, and typing is something you can’t do so well when your wrists hurt all the time. I was also getting intermittent tingling in my fingers. I was worried it was Carpel Tunnel Syndrome and thinking I couldn’t afford time off to have the op!

So I went to the doctor, and saw a wonderful GP, who sadly didn’t stay at our surgery more than a few months, who investigated carefully and said she needed to know which fingers I was having problems with. I said I wasn’t sure! Sounds dumb, doesn’t it, but I actually had to go away and come back when I’d worked out which fingers it was! Turned out that it was the wrong fingers for carpel tunnel but the right fingers, potentially, for RA. I think I was incredibly lucky that the doc actually thought of this, probably because she was fresh out of college. I didn’t have any very obvious swelling or redness, although I did have tenderness, and I think similar stuff had been missed before e.g. in 2001!

So she said, ‘It’s probably not RA, but worth checking’ and I had it checked … and to cut a long story short, it was … obviously, or I wouldn’t be writing this blog!! Once she’d started the ball rolling thing went fairly smoothly and I was soon on treatment, although it took another year to get back on a fairly even keel because I started on hydroxychloroquine and it didn’t do it for me, but I had to try it for three months to make sure, then increase the dose for another three months, then try MTX low dose for three months, then increase that … and finally … BINGO! Much better Penguin!

I still have flairs, and I still have days where I feel like I’ve run a marathon in my sleep, but they’re far fewer than they used to be.

As to weight, apparently there’s debate raging in the US at the moment about whether RA causes obesity. For more on this, which was all news to me, see Amanda’s blog, All Flared Up, where she’s flaring up against ‘Dr Phil’ who’s someone else I hadn’t heard of!

Well, I can say for certain that I wasn’t clinically obese when I got diagnosed, although I was overweight, and have been almost all my life! I know quite a number of people with RA and the vast majority of them (with one exception I can think of) have been slim to skinny! Certainly in our local Norfolk RA group I definitely felt I was the fatty! One lady said, when I mentioned it, ‘You wait till you go on the MTX, I was bigger than you and look at me now!’ She was beautifully slip. Oh goody I thought, a useful side-effect of MTX! But alas, it hasn’t done it for me! ;-)

Sorry, this is a bit of a ramble but I’m in a rush because I was so sure yesterday that the 12th (World Arthritis Day) was Thursday, and I was going to write this blog tonight for posting tomorrow! Oops!

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4 Comments »

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  1. :) Thanks for participating. Good write-up

  2. Thank you for this letter… i’m sending it along to my daughter… she has several of the issues you mentioned and it’s worth getting checked i think… Question… what is MTX…. i’m curious…? bj

  3. Hi BJ, MTX is a shorthand for methotrexate, because who wants to keep trying to spell that?! :-) As it’s one of the commonest drugs for RA it’s got its own commonly used shorthand. :-)

  4. So interesting to learn about everyone’s early expreiences with RA. Thanks for sharing!


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