Tuesday, 18 September 2012

We have a plan!!

Well today was D-day, the day I finally got to see the Pain Consultant. It has been 14 months since last time, and things have deteriorated badly in that time. I was really nervous about it, scared as well. What if I came away no better off than I was before? What on earth would I do? How could I cope?

It turned out to be a really good and positive appointment. Explained all my concerns and worries, worsening symptoms, toes curled over and so on. We discussed my current medication collection and the fact that it just isn't working as well. Plus I went through my researched suggestions for changes that might help. He has gone with them all, so lots of change over the next 6 months! Hopefully all for the better!

We're swapping out codeine, keeping the paracetamol though, and upping the Morphine MST to 45mg. Plus adding Oramorph as more potent backup, up to 3 times a day. Will take some time to get the side effects under control, but should be worth it. Once we've done that we're then getting rid of two meds, Amitriptyline and Fluoxetine and and replacing them with Duloxetine which should work better and improve things further.

Tonnes of withdrawal in coming months, but should be more than worth it. The overarching idea is to upgrade some of the components in my cocktail of drugs to more potent ones, without significantly worsening the side effects and hence hopefully improve things for me longer term. I just told it like it is and said that it would be very nice to be able to do the few things I really want to do, like speedway and archery. Not asking for miracles just not lose the little bit of mobility I have.

Seeing Consultant again in 6 months, with 3 month telephone appointment to check how it's going. 
We have a plan.... fingers crossed it will be successful!!

Thursday, 6 September 2012

Plates of meat

Feet. You know those things that help you walk. Imagine if you will how constant pain over time makes this basic, simple movement harder and harder. That's the situation I'm in and things seem to have gone downhill even more rapidly in the last 6 months or so. Is the fact that this coincides with my pain meds failing badly to cope with everything CRPS throws at me a coincidence? Wish I could say no but....

Having problems walking of course is nothing new and has always been a horribly painful affair. Since CRPS struck I rapidly became wheelchair bound, although I fought it like hell. I can't walk in the true sense of the word, but shuffle along for no more than a few metres, either grabbing onto hand rails or being completely supported by Eric who wraps his arms around me. I keep my legs as straight as possible, essentially moving from the hip where there is no pain. My right foot in particular has bent inwards more and more over the years. Oh and the big toes on both feet stick up alarmingly and I simply can't get them to move down. Balance is 'interesting' to say the least!

What has become extremely worrying is the way that I seem to be able to bear weight on an ever smaller area of my foot. My feet have been slumping over on the side of my velcro fastened shoes for years, but it has now got to the point where I am only putting the outside edge of my foot on the floor together with the heel. At it's worst, I can only manage to put part of my heel on the ground, the rest of my foot is in the air. The right foot as always is worse than the left but the left is rapidly catching up as it has to constantly do more of the work. I can't stop or slow down the decrease in function. It's as simple as that. If I do try to put full weight on my right foot it feels as if a stake is being driven through the centre of it. Being unable to get to see the Pain Consultant for over a year hasn't helped because my GP won't (well, can't is a fairer reflection) adjust my medications or change tham. So I've been struggling along really badly and it's taken it's toll. 

I said about the right foot bending inwards. This has become more pronounced but there's another more worrying development. When I sit with my feet down I now rest on my nails on my right foot. I got Eric to have a look and three toes are now curled completely under.  It is a really horrible feeling, especially when my big toe is pulled right up. The worst thing is that I can do nothing about it, can't move any of the toes at all. Don't see how I can fight it, although I'm desperately hoping that my Pain Clinic appointment will bring additional relief and mean I can use more of my foot. I suppose I've done well to keep my feet as 'well' as I have for so long. Not much consolation though....
I am scared that if something doesn't give my mobility is going to become completely compromised and I won't be able to weight bear on my feet at all. The thought is absolutely terrifying! I am trying to put as much of my foot down as I can in the hope things will improve. Sadly I realistically have little, if any way of improving my situation. 

There is a wider issue of course and one that is becoming worse with the new Legislation the Government is forcing through. Waiting lists just to see a Consultant are becoming longer. It seems to take forever to get a firm diagnosis for CRPS especially in the very early stages. When it is during the early stages that any hope of remission is at it's highest. Not only did my diagnosis come too late, CRPS had already started to spread. The same can be said for so many who have CRPS. Of course there are no guarantees that an early diagnosis leads to remission. But at least you'd have the chance? 

Of course the same applies once you're in the system as my situation highlights. It seems utterly ridiculous to me that there seems to be no prioritisation in place to take account of the severity of your condition and appointment waiting time. I'm not asking to jump the queue. Why is there no slack in place to allow for urgent appointments? My GP has written to my Consultant at least three times, but hasn't even received any advice to tide me over till I actually see him. I can't be the only one spending months desperately waiting for an appointment, in the knowledge that things are getting worse and there is absolutely nothing I can about it.

There has to be a better way doesn't there?