right on!
 

Having no definite diagnosis is certainly a pain in itself. I suppose I just have to go back to "chronic pain syndrome". The PM was really quite airy-fairy. I said it seemed like CRPS and so would like to try gabapentin, she said she thinks it's probably not CRPS, and gabapentin wouldn't be her first choice even if it was, but why not try it anyway? I don't blame her, I think that's probably the only attitude she can take in this situation, but it doesn't inspire confidence.
I'm sorry about your epilepsy diagnosis. My mum has temporal lobe epilepsy as well vascular dementia (she's 76), and we think a fall due to an absense seizure is probably why she broke her thigh last year, which very badly affected her state of mind, though she did recover relatively well. I guess a fall could be much worse for you (I don't want to worry you, but we need to be realistic, and you've probably worked that out for yourself anyway).
Despite not being Christian, I do sometimes find it helpful to think "these things are sent to try us".

Hi Robin

I posted after your introduction on the RSD thread. I am from the SE UK (Suffolk) but am in university in Bath. RSD pain is very distinctive - the mixture of burning, alloydinia etc - do you have alloydinia? Just out of interest - if you do too much do the painkillers help you recover from the extra pain of it? I know there is a type of RSD where there is very little pain but other sympathetic symptoms. I think (not a dr here) that following the path of perhaps a different diagonsis OR confirmation of RSD/CRPS through another pain specialist is advisable (Though I know how hard it is to get ANY in the UK!).

Take Care, Love

Froggsyxxxxxxxxx

Welcome Robin
 

:grouphug: You are certainly making valuable contributions to our Site already!

Take Care

I just replied to that.

Just did a web search on that. Google listed just four pages, two of which are on neurotalk! But no definitions. But reading between the lines, is it pain from a mere touch? In which case, no, though my sense of touch is affected, seeming just slightly strange in the affected area, slightly "electric".
Re the "burning", I do have that sort of pain, but not much until recently. I get a variety of types of pain, at various places around the knee, though it's mostly in front, over the patellar tendon region. Just recently I've had more of the burning sort, though, which feels to me very like a muscle or tendon sprain, both re pain type and the way in which it's linked to activity. It seems to be associated with a weakness, so that, the worse it is, the more easily it's made worse still. At the moment it's so bad that just a little tension in the leg muscles will set it off. But it's not excruciating, or anywhere near that. My main concern is how much worse it might be made by activities I can't (or won't, to be honest) avoid.

I seem to get some benefit from anti-inflammatories like ibuprophen and diclofenac.

Thanks for that. I'm not sure about getting a second opinion when the first specialist hasn't really expressed an opinion! But I'll talk to my GP about it.

Thanks again, and you take care too.