Hi everyone

I had my pain clinic appointment finally yesterday. I got to see the consultant rather than his registrar. He was really lovely.

He started by addressing my medication and said I should have a "holiday" from pregabalin and duloxetine and can come off both within a fortnight, so I have started that already. He said there are no other options medicine wise for me now. That was a bit depressing to hear but then I am sick of being on ones that don't work.

He then talked about my diagnosis of CRPS, he said while I have it, it's more of a "label" than a diagnosis, and he said he wouldn't consider it my main diagnosis. When I asked him what he would consider as my main diagnosis, he said that would be addressed in the pain management programme he'd like me to do. I presume he means I will learn to live without a diagnosis.

So yes, he's put me forward for the PMP, which is great. However, things went even more downhill from then as I asked him about the SCS. He said that I should not get my hopes up at all about getting an SCS as they are not suitable for someone with pain as widespread as mine. He said if I'd had pain in one limb rather than two (and my back), it might have been an option. So I was totally gutted by that. Tried not to show it.

Then I asked about what he could do to help me with the sex issues. He said I would get counselling as part of the PMP to learn to live without it.

On the way home I cried a bit and realised I haven't gained acceptance of this at all. I am not going to get my pain under control, I'm not going to get my legs back and I am going to have to face the idea of getting a wheelchair. I have high hopes for the PMP for being able to cope with the pain but it's never going to not be there. I am excited to do the PMP, and am grateful for the opportunity and for his honesty at the appointment but it's never easy hearing what you don't want to hear, is it. I really thought after all those suggestions of the SCS from other docs that I had something to look forward to, and the neurosurgeon had said it could give me a lot of mobility back and now that's gone. I have to pull myself out of this funk as I hate being depressing.

Kathy
xxx