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Old 01-06-2013, 07:30 PM
Neurochic Neurochic is offline
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Join Date: Sep 2011
Posts: 246
10 yr Member
Neurochic Neurochic is offline
Member
 
Join Date: Sep 2011
Posts: 246
10 yr Member
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It's always impossible for us to know how skilled your doctor is at diagnosing CRPS but its something that can be very difficult to diagnose. Its important to get a second opinion from the other doctors you are being referred to along with the various tests they are proposing to do. It may still turn out to be something else but if not then at least you know. It's good that this is all in hand for you.

If it is CRPS then the absolute worst thing you can do is use the wheelchair. Even though it hurts much, much more to walk on it, you need to grit your teeth, be tough and keep doing it. Not using your leg will only make things much worse in the long run and ultimately it is likely to make the pain levels much worse too. Building it up slowly is fine but be aware that it isn't likely to make any great difference to the amount of pain you feel, at least not in the short term. It will probably still be significant. Even if you are not able to cope with walking big distances, you need to keep walking on it, even if its for shorter periods, several times a day in your home, that will make a huge difference. I don't know what PT you are doing but, again, you need a rapid referral to a good PT who has experience of the condition and expect to be working with that person for some time. If it is CRPS, the pain you are feeling isnt making an injury worse nor doing any physical damage and is something you have to learn not to fear. Easy words, but extremely hard to do as we all know from our personal experiences.

As a dancer, you will be no stranger to hard work and toughing it out through physical discomfort I'm sure. All of that determination and discipline will be invaluable to you in getting through the next phase of your life. CRPS is often a condition that very active and sporty people get so you are in good company. It is exceptionally difficult to lose an active lifestyle and feel so limited but there are people who eventually obtain a remission from their symptoms, often with intensive and tough PT and lots of determination amongst other coping strategies. It can take some time but it is possible.

If your doctor is sure it is CRPS you need to seek a referral to a good pain management specialist, preferrably with minimal delay, who can start to address your particular symptoms, probably with various medications and other interventions. I would also urge you to learn all about the condition from reputable sources like the RSDSA.org website. You have a hard journey ahead and you will need to be your own advocate for your treatment. Knowledge truly is power when you have this condition - it allows you to sort the useless doctors and PTs from the decent ones, gives you the ammunition to fight to try all the different treatments and medications that may help and gives you an idea of what different options may be out there in the future.

I was very active and sporty so I know how desperate it is to be in agonising pain, feel uncertain about the future and able to do very little. If you are starting to feel depressed about things, please don't suffer in silence, its totally normal and understandable. It is something that most of us have had to deal with along with our CRPS. You may find that getting psychological support is really helpful to you as you go through this diagnosis and treatment process.

I wish you well and hope that you get lots of useful help on here.
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abbeyn93 (01-06-2013), birchlake (01-06-2013), loretta (01-08-2013)