Hi buckhorn,

I just want to state categorically here, and in no way to offend anyone at all but it is absolutely impossible to 'put the pain out of your mind' when it is bad pain. The best you can hope is to be distracted enough at times that the pain signals are secondary to whatever is taking your attention. You can get used to the pain, but that doesn't mean you're not feeling it just as badly.

It's very honest of you to say that you have no idea what she's going through - one of the things many of us have dealt with is people thinking that they DO know, and that their bad back/headache is the same kind of thing, and a couple of Nurofen should put that right...

Being in long term bad pain day to day is hard to explain. But I'm going to try here, so please forgive my wordiness ....

Imagine being thumped hard on the arm in the same spot on the hour every hour for a whole day. To start with it hurts badly and you wince and maybe even cry a bit, when you're hit again it throbs and seems to travel further through your arm, it shakes you up. The more times you get hit, the more you get used to the pain coming, the more you brace yourself for the impact of it each time, the more tense you become as you expect the next time...you get used to it, but it hurts just as much, and you hate it every time. For us, that thump is the pain of CRPS, but each thump is every minute of every day of our lives. And the pain is often worse than one of those very rare horrible eye-crunching, darkened-room headaches when you daren't even move in case it makes your head explode .

We get used to it to a certain degree, but just bracing ourselves against all that pain makes us scared, and irritable and forgetful and clumsy and moody and sad and just plain low at times. We are on high alert all the time for the pain to kick us again. We are tense and we are scared. Because although it's bad normally....when its really bad, it is properly hideously awful pain that makes us want to pass out rather than live through it for another second. Traditional painkillers don't work well on neuropathic pain like CRPS, even morphine, so we are white-knuckling the pain ride a lot of the time. The fear can be overwhelming at times - fear of the pain itself, fear of it never going, fear of the future, fear of all those hours and days and weeks and months and years of pain ahead of us without relief.

Imagine the worst pain you've ever been in, even if it was just for a few moments....then imagine that pain being there every single day as soon as you wake up, imagine it being there all the time, keeping you from sleep, imagine it never ever really going away, imagine having to work through it, and try to attend a family dinner with it, and talk to people through it. Imagine how cranky you would be. Really bad pain is a terrible curse on your heart, a proper black cloud that haunts your steps, a spine-tingling howl in the darkness. All those things and more. I know it sounds overly dramatic, but it really does feel like that sometimes.

Of course we have good and bad days, but even the good days would rate as pretty crummy on an average person's scale!! On a good day I can laugh and smile and get about ok ish for short times, and maybe plan a short outing. On a really bad day I cry with loneliness and pain, and my guts twist in hopelessness and fear, I can't walk more than a few steps, I can't concentrate on a thing, I can't hold a conversation, I can't read or watch tv. I just exist until the worst is over.

I hope that makes some kind of sense. There's an old saying about not judging until you've walked a mile in someone else's shoes.... I admire your attitude to this immensely, it must be horrible trying to figure out the best way forward. Of course your daughter needs encouragement to try things and get out and not give up, but equally she needs to know she can trust her family not to push her beyond her limits, or to forget that she is carrying this pain. Doctrs tend to forget that pain in a medical textbook or in the back of a pill packet is a very very different beast to properly bad long term pain. Saying things like 'put it out of your head' are hugely unhelpful! With time she will learn to cope better with things, and feel more confidence in her ability to do things she used to take for granted, but for now it probably feels like she's been in a car crash and nothing is the way it should be. It takes time. Learning to pace yourself takes months and months of getting it wrong and having to recover from overdoing things. It's common in the early days to do something one day and then spend the next day in terrible pain unable to do a thing...and we all still get it sometimes. You have to re-learn what your body and system can deal with. Even doing one lesson a day is a regular commitment that might seem overwhelming and like climbing Everest on a bad day.

Sorry for the wordiness and apologies if I've seemed preachy. I know I can seem a bit like that when I get passionate about something, but I'm a nice person really

Take care of yourselves,

Bram.