Nine years on

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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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7 Replies

  • Posted

    Thank you for your advice. If it's okay to ask, would you be so kind as to give me the name of your Consultant? My girlfriend is currently suffering from CRPS and we're doing everything we can to help her. Thank you in advance.
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  • Posted

    I am finding an inner resilience helps but it has taken me years without significant input from specialists to get there, apart from a really good half-hour (emotional) appointment with a pain specialist and a six week pain management course (all this year). The pain is there and winter is far worse but I am beginning to get involved in things that matter to me.

    Probably the best thing is to respect the pain- especially in winter, but not pamper the body to the extent that your muscles and joints are weakened. Emotional outbursts are normal as are shouts of "why me?" and talking through these emotions in your own way will help you and your partner. I agree with @Guest on working through the pain and discomfort in whatever way one can ~exercise, distraction, visualization techniques, meditation/calming music etc. In the end CRPS is unique to you and the way in which you work through the pain will also be unique to you.

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  • Posted

    Thank you so much for your input, Karen, it's very helpful. I'm doing my best to understand how she feels, and just to be there for her. I know it must be difficult coping with this condition on a day to day basis, and I respect you all for it. Once again, thank you for your suggestions. I'll make sure to keep them in mind.
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  • Posted

    I AM A 40 YR OLD LADY.I AM IN DESPERATE NEED OF HELP.MY GP IS LITERALLY USELESS! IVE BEEN BEDRIDDEN SINCE APRIL THIS YR,IN SO MUCH PAIN IN JUST HANDS AND FEET.I CANNOT WALK,IF MY FEET GO "ONWARDS,THEY START TO SWELL.I CANNOT BARE TO RUN MY HANDS UNDER COLD/HOT WATER,MY FEET ARE REDDISH PURPLE.HANDS ARE SWOLLEN AND RED.THE PAIN IS EXCRUCIATING.I HAVE BEEN WAITING FOR AN APPOINTMENT WITH A PAIN CONSULTANT,THAT'S NOT UNTIL THE VERY END OF NOVEMBER!!!!! I DON'T KNOW HOW MUCH MORE I CAN TAKE,NO ONE SEEMS TO BE HELPING ME WHATSOEVER.DOES ANYONE HAVE ANY ADVISE REGARDING THIS ISSUE,AND FROM ANYONE WHOM HAS HAD CRPS,DO MY SYMPTOMS SOUND LIKE CRPS,SKIN COLOUR CHANGES,CANNOT EVEN WEIGHT BARE,HAND EXTREMELY PAINFUL,DEPRESSION KICKING IN,EXTREME SWEATING,AND SO ON.THANKS FOLKS.SARAH,X
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  • Posted

    @slebby33, have you had any blood tests to rule out other conditions? Where did the swelling, pain and discolouration happen first? The appointment with a pain consultant seems far off so perhaps your GP can get nearer a diagnosis if you have blood tests. Meanwhile I would recommend printing off the Budapest Criteria (Royal College of Physicians) to see whether your symptoms match, highlight the symptoms and signs you have and show him/her.

    Have you been prescribed anything for the pain? It is really important your GP helps you find the right medication(s) to help control the pain.

    I know this is going to sound hard to do but gentle exercises to keep your muscle tone are very important- even if is very painful. Just make sure you're warm and you pace yourself - tell your GP what you are doing as he/she will see you are helping yourself and being 'proactive'. If I were you I would also say something about needing emotional support.

    I really hope you can get somewhere with your GP. Please could you keep us posted?

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  • Posted

    sarah, a distinct CRPS symptom, in my opinion, is the temperature. I'm no expert, but from what I've seen, and read, the temperature of the affected area should be different from anywhere else in your body (eg. the affected leg is cold, whereas the rest of your body is warm). Also, what kind of pains do you feel? Stay strong smile
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  • Posted

    hi i have got the CRPS type 1! in my left wrist and forearm for 4 years now , i have been diagnosed with

    schizophrenia due to the CRPS.

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