The worst part is when it flares up, the best I can describe the nerve pain is like cramp but it is absolutely excruciating (the only way to treat it is to run a cold shower over my leg). The Fentanyl patches does help tone down the extreme end (I don't normally take anything for the breakout-pain as it's a slippery slope). I actually find cold compresses to be the best treatment for the swelling and have a constant rotation of icepacks in the freezer at home and fridge in the office). There's often a dull pain, part of which feels like I need to go to the toilet (so I end up going much more often 'just in case').
The annoying thing is that my last operation temporally fixed my knee (they removed some of the fatpad (hoffa's syndrome) in summer 2013). For three months I was able to stop taking pain killers (Tramadol at the time), swim, get back in the gym and cycle (although I never really went for it, I have a carbon-fibre road bike still in storage). It started getting painful after exercising, and gradually over six months later I was back on crutches. :(
I believe there is an underlying issue with my knee which can still be repaired. Unfortunately the Dr's I've spoke to are scared to operate (they find my case interesting until they can't figure it out and then refer me). I want to try another operation to repair it before going for a knee replacement.