You poor guy. I'm so sorry you have to deal with this.

I have to apologise straight away because I have to go to work soon and didn't have time to read all of your story, but I have to answer the first point - I got CRPS after a minor knee operation and had horrendous pain for months after, but I have seen that pain change and lessen over time, and you have to believe that yore will too. At one point I could barely move at all and every moment was pain, painkillers didn't really work, physio was horrific, but at two years in I am working again (part time), walking better, out of my wheelchair and crutches, and generally able to do and enjoy more. I still have bad days, but generally things are much improved, despite the fact that the CRPS has spread to my left side.

I remember that first year all too well. Dark despair and fear of the future, the 'why me', nobody understanding it (or me), struggling with doctors and the fact that nobody in the NHS seemed to have heard of CRPS. And always the unending pain and misery.

There are certain things you have to do. You have to practice coping until you can deal with life easier - silly things like accepting that your family have no idea what you are going through, and that it is not their fault that they cannot be thinking of your CRPS all the time. It is natural for even family to just run out of sympathy at times. They don't know why you aren't getting better, and it takes time for them to learn how this disease affects you. Just keep talking to your wife, and explain how you are being affected and how you feel. Ask her how she feels too - she will be frightened for the future, for you, she will be scared by the pain you are in that she cannot help the way she wants to, she will be wondering how she can deal with it too. The fear affects everyone, and talking about it helps a lot. You can find a way through.

Read the good sites on CRPS and avoid anything scary or negative. Remember that support sites inevitably contain more of the sufferers who are having a crappy time of it - we come seeking help and advice and support. The folk who are living their lives pretty well have less need of it. Show your wife some of the clinical descriptions of CRPS and encourage her to read about the condition herself - it will help both of you.

Ask to see a psychologist to help you come to terms with what has happened to you - but if they make you feel in any way responsible or negative about yourself, then walk out the door and find another one. There are poor practitioners of all the medicinal types out there

Keep the hurt limb moving gently as much as you can, and don't ever use any ice near it. Avoid extremes of temperature, and try to do things that distract you from the pain. Take 500 mg vitamin C daily (it's been shown to reduce the risk of spread) and try using unperfumed Epsom salts as a lukewarm soak, or wrapped in a damp cloth when your skin burns. Keep your body active when you can - over time, inactivity encourages spread and weakens your whole body. Don't do anything that spikes your pain, and listen to your body.

Meditation can really help - I was very skeptical about it, but it is very true that when we are in constant pain our bodies are tense, and it makes things worse long-term. You can download mediation tracks from iTunes for free, or look for something like the Mindfulness course of meditation training. I hadn't realised how tense I was until I actively tried to relax! It really helped with the pain and my mood.

Try to find some good thoughts and some positive mood when you can, and never ever give up hope that things will improve. I really hope you see some improvement soon, and keep fighting for your treatment and care. Assume that all doctors etc you see know less than you about CRPS until you are proven otherwise! Keep reading and learning about it, it's your best protection against poor care.

Really really good luck. Sorry if this has sounded lectury, I never meant to type this much and have to dash now!!

Take care of yourself and your family. Better times will come again

Bram.

thanks brambledog. didnt sound like a lecture.

what i know i need to do is move my fingers more. it hurts so bad so i just dont do it.
my wife has been wonderful thus far but i know her patience is going to run out. its only natural.