Hi Mark,
Hope you’re OK? Good to see you!
Bit of a non-story, in the end - just me getting in a flap about nothing. I got so panicky at the prospect of not having any, I didn’t look properly.
Anyway, the wider context is I’ve been having awful pain in the tops of my feet for ages - well before diagnosis, if I’m honest.
Baclofen fixed it well at first, but over time, either I’ve developed tolerance, or the problem’s got worse. I’ve had to step up the Baclofen to levels my neuro isn’t happy with, and I’ve been supplementing it with diazepam as well (another muscle-relaxant). Both do still help, just not well enough, for long enough. So I was having to take a load of painkillers as well.
GP referred me back to the hospital, but was only offered physio - which was useless. I wasn’t convinced they even understood the problem, and certainly couldn’t explain the cause. I did step up the stretches, as advised, but saw no improvement at all.
Back to the doctors - told her I’d only been offered physio, which didn’t work - no review of meds.
She still wouldn’t prescribe pregabalin or gabapentin, but I did mention in passing that the pain was “cramp like” (it’s not like an attack of cramp - which I do get too, but like a continuous, slow cramp). So she suggested quinine. It had a really scary list of side-effects, including some potentially fatal ones, so I was really scared at first. But eventually got desperate enough to try.
It’s not a recommended first line treatment for MS, but to my amazement has helped greatly. Not only have the occasional severe night-time cramps stopped, but the ongoing daytime pain is less, too - to the point I’ve almost been able to give up the painkillers. It looks as if it must have been a variety of cramp.
Got a feeling the neuro’s not going to be very happy I’m now on quinine, as well as more Baclofen than he would like, but the reduction in painkillers speaks for itself. That’s why I was in such a state when I thought I’d run out. I imagined going back to how things were, and that I was in for a very horrible few days.
Despite being on all this stuff, I’m quite conservative with meds myself, believe it or not. I refuse to go on them, except as a last resort, but finding the right ones can make a big difference to quality of life. I thought quinine was an unlikely saviour, especially as not recommended for MS, but there you are! Surely can’t be coincidence I’ve been so much better since taking it?
Tina
x