I don’t really have any tips per se really, I mean, I use heat a lot as therapy, I’m struggling to find the right pain relief now as have a tolerance to codine. I find trying to keep fit helps, walking is good for bad days, swimming too. Massages are great, as are the oainfree trigger point Pena for the pinched nerves (I get this a lot) and am going to try a tens machine. Decent sleep is really important as it can cause chronic tiredness due to muscles having to work harder to keep everything where it should be. I was referred to a ‘hypermobility group’ physio type thing, but it didn’t really work for me as the others were very down about everything and I found myself feeling dragged down and feeling sorry for myself when I am usually pretty positive and don’t let it stop me doing stuff, even if it hurts. The hardest part is doctors not knowing much about the condition. Don’t let them fob you off, if something isn’t working for you, tell them and ask for something else or do some research and try things that others have said helps, that sort of thing. Sometimes physio isn’t enough, as it was in my case, and it took a lot for me to get the docs to realise this; I was very lucky that the higher level physio took some history and fiddled with my joints and said ‘you need an orthopaedic surgeon’ and I was so happy when he took a look at my scans and fiddled and was like ‘hmm, yes, the only thing to stabilise this is surgery’. It’s a bit of a shame that it took quite a traumatic dislocation to get to this point as I will have had two periods of being on crutches, out of action sort of thing this year, and the surgeon said if I had been referred before the incident, he would have operated and I wouldn’t have done as much damage to my knee with the trauma.
Basically, know your own body and unfortunately, sometimes you have to put up a fight to get what you need!