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Old 08-01-2013, 04:04 AM
Brambledog Brambledog is offline
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Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
Brambledog Brambledog is offline
Senior Member
 
Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
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Quote:
Originally Posted by liz0323 View Post
I was just recently diagnosed as having crps. I was forced to go to 4 different doctors and finally went to my first pain managment appointment monday. Every DR. agreed on what I have. I was wondering if maybe anybody could give me advice on a few different things. First off, this happened after I had surgery on my wrist through a workers compensation injury. Any advice on dealing with workers comp and rsd? Its spread from my wrist up my whole arm already. My biggest question... I'm only 26. Im so scared of a life of this. How do you handle this emotionally and mentally without falling apart? My dr has told me this was ignored for too long by my surgeon and theres no chance of it ever going into remission. I wanted to be able to talk to real people who deal with this instead of different drs who all have a million different opinions and websites which just confuse me more.

Liz
Hi Liz sorry you're here with CRPS, but welcome to a really helpful and supportive community. It certainly is a confusing thing to get your head around, but you WILL learn to deal with it and live your life. Try not to panic, it can be managed pretty successfully, but yes you are going to struggle as well. Be prepared to become even more strong, stubborn, resourceful and determined!

In two days time I will have had CRPS for two years after a knee operation the was supposed to 'fix' my knee pain. Amazing how your life can change so quickly... Mine has spread, and I worry about it spreading further, I think the Vit C and Mag advice is good, and there is some medical research to support it. In an effort to state the bleedin' obvious don't use ice at all, and keep using that arm as much as the pain allows. Try to exercise and keep your body in as good a shape as you can, as weakness makes you more vulnerable to injury and illness - mine has gone a bit flabby and weak over that 2 years, and I'm having to fight hard now to get at least a bit of tone back!

There is a balance to strike with it. You need to learn about this condition so that you can inform the doctors and other medics you see (very few know about it), and you will experiment with meds and treatments to find a combination that helps you day to day. You have to be your own advocate with this, you can't just accept what any doctor tells you about it - too many are not working from a position of specific knowledge, and you will end up knowing more about this than they do. You might need to change doctors, fight to find a good physio, stop a nurse from using a BP cuff or taking a blood sample from your bad arm... It's certainly not an easy ride.

BUT you do learn, you do cope and most of us find that things settle down to a state where we can live our life pretty well. You can overdo the research and the reading and being angry about it. The balance is to keep educated with new thinking, keep in contact with supportive knowledgeable people (check!), but live your life as best you can without concentrating on it every minute of every day. You can enjoy life despite what the CRPS throws at you...most of the time There are bad patches, and days when the fight is too hard, but you just keep on going.

Prepare for the worst, hope for the best and when you're learning about it, steer clear of any obviously biased websites, remember that the idea of stages has been proven and accepted as rubbish (some docs still believe it) - and don't look at the pictures on some sites (they can happen, but are the extremes, and you don't need them in your head).

Good luck with everything, and I hope your spread stops where it is!

Bram.
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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