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August 2001, following a very simple fall but badly injuring my knee in the process, I developed CRPS in the November which went completely undiagnosed by my local hospital, despite having very very severe symptoms. My knee was completely misdiagnosed (another very long distressing story) To cut a long long story short I ended up seeing the most FANTASTIC Orthopaedic Consultant at University College Hospital London (a round trip of 500 miles but absolutely worth it) who diagnosed Reflex Sympathetic Dystrophy or CRPS without even seeing me ~ I had to write a calander of events before I saw him as it was actually 12 months on from the fall. This man literally saved my life, as my leg by that time was in such a mess. I was very depressed and in absolute agony, unable to weight bear and on crutches. I went into hospital 80% disabled but walked out around 10-12% diabled. I still have most of the recognised symptoms on a daily basis, but managed to get back to my job in education which I love, although I am now seriously thinking of taking early retirement, mainly because of the discomfort I still experience daily and as I get older it is becoming much harder to \"just get on with it\" which has been my philosophy for the last nine years.
I cannot do any of my previous hobbies ~walking the hills, dancing and generally leading a very very active life, but I have been able to hold down my job because I work in eduaction with the 13 weeks holidays, otherwise this would have been impossible. I was able to return to driving which I enjoy. My husband and two children have been absolutely wonderful ~ without their constant help, support and love I would not have coped.
Over the years I have had various cocktails of drugs which I hate taking as they make me feel dreadful. At the moment I take paracetemol and ibuprofen daily with the occasional morphine cocktail thrown in.
My best advice is no matter how bad the pain is, or how bad the symptoms are (and they are very very bad I know) just get on with your daily life as best as you are able to. I am a firm believer of mind over matter (I have been up since 3.45am this morning because my symptoms are really playing up) I work through the pain and discomfort in whatever way I can ~exercise, distraction, visualization techniques, meditation/calming music etc. My consultant in London did not hide the truth from me way back in 2002, he told me this was for life.
Unfortunately because my \"good right leg\" has taken the strain and compensated for my disabled left leg/knee (I have had four ops on this one) I am now having problems with the good leg, having had to have one operation already, with CRPS symptoms developing in this good leg. Not as severe as the left leg but undoubtedly developing rapidly.
I take each day as it comes, positve mental attitude is a must. The doctors can only do so much, it is up to the patient to do most of the hard graft needed to recover as much as as is possible.
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