I haven't been posting much - so first apologies to all of you. I hope you all know I'm still thinking of you as ever
Me - things aren't good. I know that there are a lot of people worse off than me, but if I was the superstitious sort, I'd say there was some malevolent little being out there laughing its socks off as it pours more and more mess onto my plate. I need to vent, and I hope you'll bear with me.
I've got 'something' going on - been getting fevers almost every evening for the last few months, major fatigue, joint pain. Sometimes a rash. I've had four pretty decent infections in about
two months - UTI, probable meningitis, gastro... now I've got cellulitis again. I had blood tests when I had the UTI - and of course lots with 'meningitis' - all the inflammatory stuff was up with those, the rest of the time it's normal.
My back pain isn't abating - still can't figure out what's going on there either. It's a month until I see the surgeon - so hopefully at least he'll be able to do something for my upper back - but without knowing exactly what is going on with my low back, other than disc bulges that don't actually seem to be touching anything, there's not much my doctors can do.
And then of course the CRPS. I saw my PM yesterday, and all he can offer me is another ketamine infusion. I've accepted - mainly because I don't have much choice, but ket has only been of marginal help in the past and always comes with a bag of side effects. I've done all the nerve pain meds, been through the opiates and the cocktail now is the best I we've been able to get. He doesn't feel that adding any other meds to my pump is an option, my SCS isn't working properly because of the irritated tissues from my back injuries. He's consulted with his partner, with other docs, and got not further forward.
We spoke about
surgery for my deformed feet - something I've been discussing with my physio for a while now. I expected his answer, but it was a blow to hear it - that in theory surgery could help but he feels I am so fragile I would likely end up much, much worse... assuming I could find a surgeon who would operate in the first place. This kills me, because they are a huge cause of my disability. If someone came to me tomorrow with that magic wand that would relieve all pain, I'd still be unable to walk because of the state of my feet.
The amount of opiate I'm needing to take just to put a dent in the pain scares me too - I'm up to 30mg Oxycontin 3x a day, plus IR oxycodone for breakthrough. When I take the Oxycontin, I get that initial kick of pain relief about
20-30 minutes after I take it. It's got to last 8 hours. It lasts 3 or 4 if I'm lucky. Yesterday, with my GP's okay, I had 25mg of IR to make the hour's car trip to my specialist. It knocked me silly for about
20 minutes, but barely touched the pain. Looks like I'm becoming tolerant, but we don't know what to do. There aren't many others I can handle, and those that I can, don't touch the pain. Just fed up with the whole situation I haven't slept more than 2 hours in 24 for about
a month now, and my body won't stop burning. This sure isn't the life I envisaged for myself.
Moderator - Chronic Pain Forum
Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.
Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump