With Death Toe currently having an absolute rampage pain wise, I’ve been sleeping appallingly badly since about… June! By badly, I mean some nights I’ve managed about three hours in chunks of 20 minutes. Broken up by shooting pain waking me up rather abruptly. Which is now spreading up foot and leg… Probably over excited nerves or something similarly medical sounding.
The type of pain – ischemic pain (caused by shite circulation) doesn’t give a crap how many painkillers you scarf down. Also likes to get worse when you lie down. So I’m in the weird position of being incredibly lame, but actually most comfortable when moving as it gets the blood zapping around.
Its got bad enough they are now trying me on tramadol at night, on top of the paracetamol, codeine and pregabalin. I slept four or five hours straight last night which is the longest I can remember in months and months, so possibly tramadol is strong enough to make Death Toe shut up for a bit!
Anyhoo, just had a short notice rheumatology review. Probably granted so quickly as I happened to stub Death Toe off desk whilst requesting the appointment and bawled and howled down the phone 😉
Basically the consensus is shit all round. The meth isn’t working fast enough. Vascular team don’t want to touch me. Amputation not an option whilst blood flow to the area is so wimpy. Got to go back to 20mg pred – had just got down to 8mg and was super chuffed about that, but its one of the only quick acting emergency measures she has 😣
Had the usual toe exam torture and swore a lot. Dr has already been in touch with a vasculitis doc in Manchester today for advice and is going to chase up asap. Likely though that I need to go on a stronger immunsuppressing drug of some kind. Stronger ones are bad as more toxic and more side effects.
We discussed rituximab (WEETABIX), the one that I actually want to be on and she basically said she thinks because it is “just a toe” 😮 and not horrific leg ulcers or kidneys yet, they would struggle to get funding for it. Is this because its a tiny hospital?! Or is it really only prescribed when all other options tried and organs are being damaged too?! Bloody hell!!!!! 😠
She is under no illusions about how much pain I’m in, especially when she can see me determinedly NOT KILLING HER when she is poking at Death Toe. For now, trying a few more days of tramadol and then potentially some kind of morphine for night time. When she can find somewhere that can do the test, she is going to ‘type’ the cryos and see exactly what subtype of the cryoglobulinaemic vasculitis I have. Maybe needs doing in Preston. Gotta get my blood there at 37 degrees ha! Visions of a thermos… 😅