Last time I was there was to see the RA nurse. I was a bit concerned about this as at that point I was taking nothing more than Tramadol and paracetamol, no DMARDs etc but she reassured me she could go and see the consultant there and then.
She's very nice, as are all the staff there but I couldn't help feel a bit 'don't know what to do with you now so let's fob you off a bit'.
As I have had a bad reaction to so many of the DMARDs they have started me on a low dose of an older medication, Leflumomide, taking them on alternate days for a month then every day if I can cope with them. Same precautions as other meds as they reduce my immune system - and no soft cheeses! So much for making the world's best white chocolate and raspberry cheesecake ... can now make it but not eat it. Pah. If this fails there are Gold injections (which I don't want) or - er - nowt. End of the line. They won't start me on biologics such as Enbrel unless the next scans show increased bone damage.Thank you NICE.
What bugged me - not so much at the time but later on when I thought through everything - was the implication that my ME was making me less able to cope with the pain. In her words, 'if we do a touch test today you will come out scoring extremely high, which says your RA is very active indeed, no matter what the actual blood tests say. But is wouldn't necessarily be true.'
That's all well and good, I totally accept that.
BUT at this point my poor left hand was swollen and bruised, my nurse the previous day (blood tests) had commented on how bad it looked. The worst it has been so far - I can't make up or imagine swelling and redness like that!
Anyway, the swelling and pain lasted a good week after that which really got me down. I went to the Dr again last week after a chat with the receptionist who thought I needed an appointment in case something was broken or infected. Dr (grumpy monosyllabic woman with a hairy lip, not the world's best bedside manner!) took one look and said it looked 'terribly painful'.
I KNOW IT IS!
IT HAS BEEN FOR TWO BLOODY FEKKIN WEEKS!
Anyway, miserable cow she may be but she gave me some new anti inflammatories to try, one daily, and something seems to be easing, Whether it has run its course or it's the tablets I really don't care, it's just wonderful to have some use of my hand again. Typically my feet have decided to join in now and my knees (poor kneesies!) !
Another thing that had me thinking was can I distinguish between the ME and the RA tiredness (not the pain as such, the tiredness side)? This is something the Prof asked me right at the beginning of my treatment.
Yes.
RA - feels like the flu. Whole body feels out of synch, legs like Bambi on ice, that sort of thing. Want to nod off all the time.
ME - feels like someone has pulled the plug out.
Right, moving on, Which at the moment I wish I could literally, would have loved to get out for a walk in the snow yesterday, along the canal and the park. But never mind,
I am thrilled that I can spin, even when my hand is bad - thankfully it is the left hand, which means all it needs to do is gently hold the fibre while the right hand does the pinching work. So spin I did.
I am so pleased with this - I know it isn't perfect (if I want perfect I would buy it) but I am really chuffed. I think this will become mitts maybe for my sister. I usually spin thin and tight - this is about aran weight and wonderfully soft.
I also have a rainbow that I spun the other day, piccies to come - we have sunshine today so I must take advantage and get some photos.
So life's not all bad. And as my fingers are feeling more with it at the moment I have knit a soft floofy grey scarf and started matching mitts - again piccies to come.
Keep warm! And don't fall on yer bums on that ice.
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