Today I had my six month(ish) review with my Pain Management Consultant. It's the only time I get to discuss my condition as my GP has no involvement in deciding my treatment. He prescribes what he's directed to and deals with anything else. It's not ideal but I'm grateful that it's set in stone and if I'm desperate I can email them and someone will get back to me.
It was a strange appointment. As always he let me talk, asking extra questions and clarifying things as I went along. I talked about all the various things that have been going on, including the problem with extracting my tooth. He wanted to know more about my arms which I talked about (basically that they have gone down the same route as my legs). I even mentioned my constantly salty tasting mouth, which Eric had written down on our list, but I didn't think was relevant. It's been like it for a few weeks now, coupled with an increasingly worse dry mouth (which I've had for years).
I said that I didn't think the tablets were as effective and that the continuous burning sensation down the front of both legs for example was worse than before. I try desperately not to take Oramorph other than at night (combined with several other drugs) to help me sleep when we eventually turn the lights out at 2am or later. He agreed that that was a sensible approach. Bonkers really when you think that I lose complete days to sleep and only recently was falling asleep whilst eating a bowl of cornflakes!!
The depressing conclusion is that everything, even the ruddy salty taste in my mouth is partly or entirely due to my nerves not working, misfiring or whatever because my entire nervous system is so totally and utterly broken. Add side effects and it becomes blatantly clear why things are getting worse and more of me is affected. One thing's for sure, if they do ever come up with a proper treatment or cure for CRPS it's not going to be much good to me. Having said that I can't see that happening in my lifetime anyway. Does beg the question though, what state will I be in five years from now? Ten? Of course I can't think like that, nothing has changed from before the appointment, I just understand what's going on a bit more.
We inevitably discussed medication and my condition. It's a team effort which is brilliant, he is more than happy for me to bounce ideas and questions off him. He is incredibly honest and knows that I know exactly what my situation is. A lot of the time he just admits that 'he' (the medical profession) doesn't know. Trouble is there's not much out there and what there is doesn't really do anything for me. Pregablin did quite well but affected my liver function so we had to stop it. We found something else that sort of did the same job. Well better than anything else available anyway. The other medication that helps is morphine.
At this point he suggested Tapentadol which is an opioid like morphine but acts differently and therefore might do a better job. Oh the excitement!! The chance to try something new, that might do something more than morphine does. I don't care how small that improvement might be, anything would be wonderful. It will take five months to transfer over completely to the new drug, replacing some morphine with some Tapentadol each month. That’s assuming I get on with it and there aren’t hideous side effects. I’m booked in for a review with him in three months. Fingers crossed.
Summing up - As the saying goes ‘With pleasure comes pain’
Things are far worse than I thought. I can develop all the joyous symptoms of CRPS anywhere, my nerves can and will act oddly, too sensitively or just fire for the fun of it. Basically my nervous system can do what the h**l it wants. That’s definitely pain whichever way you look at it.
BUT, for the first time in a very long time we are trying something different which may improve the pain control. It might be marginal and it will take a long time to make the change to minimise withdrawal and side effects. At the end I may be no better off, but we have to try. You never know there might be some pleasure in the form of less pain.......