I saw Dr Godwin just over a week ago, and she read the letter from Queen Square. Remarkably, and most frustratingly she still didn’t want to refer me to the pain team because I’m still u see the care of a surgeon. We talked about the pregabalin, and she advised me to increase the dose again, now to 300mg twice a day – the maximum permissible. After further discussion, she eventually agreed to make an advice and guidance request to the pain team. She thought physio should be explored again. I explained I was not happy with the neuro physio last time and his conclusion of “let’s hope the surgeon can suggest something”, but she still advised me to request that I be seen by a specialist neuro physio again. Evidently it is down to me to see if I can get referred. I also explained how my legs are getting worse and that my gait is changing again. She asked if I thought that might be the pregabalin. I’m not medically trained, so I pointed out that I wouldn’t know, and she said she didn’t know what to suggest. When I got home I re-read the information leaflet for pregabalin, only to see that a common side effect is a change in gait. I decided to give the max dose a couple of weeks, and if I’m not seeing an improvement in the pain, I’ll reduce the dose again and see if my legs improve.
Yesterday – oh no wait, it’s the early hours of Monday, I mean Saturday – we drove down to Cornwall. The drive itself wasn’t too bad, and we were probably only 1/2 hour away from arriving before I really started to get significant pain. However, Sunday I was in agony virtually all day, and I think my legs were the worst I remember. Whereas I tend to get up, have a bit of a wobble and can then correct myself, the correction just wasn’t happening most of the time. I did eventually get to a point where I could go for a gentle walk around the park, but I kept C or Sophie next to me all the way. I crashed out for an hour when we got back, but when I got up again to have dinner, my legs were jelly-like, and the pain was so bad I succumbed and took some oramorph. Thankfully it did the trick, and after 20 minutes or so I started feeling more comfortable.