warning! I'm about to bang on about my relative lack of pain and allegedly 'high pain threshold' which I can easily imagine might be quite offensive to those of you who cope so very well with awful pain on a daily basis .... but I'll try to explain!
Have just seen the Rheumy nurse. My appointment was right at the end of the day which made it impossible to cover everything I'd wanted to bring up especially as she'd forgotten her promise to get x-rays of my hands & had to suddenly leap up & arrange them pronto before the Radiologists went home.
But she did take a good look at my feet - first time anyone's bothered to do that. She agreed that they looked as if RA (or whatever) had been having a go at them for a good long while, considerably longer than the 2 years since diagnosis. She said that several of my toes look as if I have Dactylitis which I think raises the spectre of PsA. I've now had both feet & hands x-rayed.
That led on to the fact that I have little pain or at least nothing that I can't kind of switch off. She said that that makes me a very fortunate person in some ways but that it has hidden dangers. My mum was like me, possibly, an apparent whinger who nonetheless managed to carry on up until the point that serious illness manifested itself. In other words she honestly didn't know that something was up until it was too late.
My DAS score is in the high 5s - can't remember exactly - & ESR spiralling. So apparently if things are the same after another 12 weeks on mtx & Sulfa then the process for starting Biologics will kick in.
I find it very confusing. Time was I'd have been so grateful to hear that Biologics were on the cards but I'm too far down the road for such a clear-cut response. Looking around the waiting room, stuffed full of people who were really struggling, I almost felt like apologising for my presence & going home. I was easily the most bouncy person there. I have a husband who enjoys his work & doesn't mind supporting both of us pretty much so I can pace myself & that really suits me - my life is full & I wake up most days raring to go. I had to do that 0 - 10 thing about how well I feel & pointed out that if I was still working full time I'd probably have to give it a 10. But settled on 5. Even that felt like a lie - I just don't know how to assess my well-being or lack of it because I feel good but know that bad things are happening & it's an ongoing .... not 'nightmare' exactly ... but a weird dream perhaps. `
Please forgive me for going on a bit. The liver seems to be holding up so I have had a couple of glasses of wine. My experience just doesn't seem to tally with that of most people here though this site is a fantastic source of support & I'm so grateful. I just seem to be getting worse but don't feel it, it's very strange. And I do worry that at some point the birds will come home to roost, sort of thing.
If I do have a high pain threshold it's certainly nothing to do with strength of character - just a few days of constant pain & I'd be crying out for the strongest drugs going! It must be my neurons - no sense, no feeling, perhaps!
God, what a long blog! I'll regret it in the morning!
All the very best to all of you,