Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 01-18-2013, 07:39 AM #21
mommystime2 mommystime2 is offline
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where to start.... the intial injury they said was tendonitis both arms. so pt was started with the mega burning pain i lived with both arms wrapped in ice starting in sept 2011. pt made exos braces for both arms the did night time elbow splints to keep arms straight. pain meds from sept 2011 to jan 2012 were hydro 5/500 1 or 2 every 4-6 hrs and motrin. then saw nurologist jan 2012 she need nerve conduction tests omg horrible i had a bruise from jan to june not good. she wanted to try gabapentin so we did that thru may. in beginning of may she added clonidine to the mix that wasnt good i became very suicidal still in huge pain in june i saw a pm dr the same one i see for my back. he thinkss meds can control some pain could do the block but fears it may come back into left arm if he did so not a good choice. also saw a dr for prosthctics he made bio sleeves for me....good choice. one most days i can wear the sleeve and it keeps arm warm and all. went to missouri end of july into august. very lil pain took pain meds for drive down n back nothing else. been on and off predisone since june. gained 40 lbs on this. not good with back injury. use lidocaine ointment as neded now and taking 9mg predisone and 5/500 hydro as needed and have back up flexeril but nothing really workd takes edge off is all if it even does that. for give this spelling one handed isnt easy
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Old 01-19-2013, 08:53 PM #22
Wibley Wibley is offline
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Quote:
Originally Posted by bfff2020 View Post
finding a doctor/practice that are the full package is the holy grail as far as I'm concerned

I moved house last year and my new doctor managed a diagnosis recently so well done to him there but when he says 'come back in six weeks and we'll see where we are with it then?' I'm gobsmacked and consequently will be phoning them to speak to another doctor tomorrow morning

it's a sickening fact that 9.7/10 doctors actually don't want to help you - I've seen so many it took 2 years just to get the diagnosis and on top of that lets not forget how they condescend and think it's all in your head

it's not just us RSD patients either they just want anyone that needs to discuss pain relief out of their office ASAP

CRPSsongbird I relate to much of what you said we're all thinking like that sometimes or even all the time. I'm glad you have family around that's a huge thing to have and your daughter sounds like an angel giving you advice on how not to feel worse

what I would say it imagine if there was no one else there with you all the time - it would be much worse

Neurochic's first post on this topic is A++ advice and would prove useful to anyone that's feels like reaching out for help, I'm also in the UK and I swear no one's heard of CRPS apart from this one doctor

keep
I now more than ever see the need in finding a great pain mgmt doctor. I was very lucky when my ortho doctor gave me a referral to my pain doctor who is an anesthesiologist. He seems to me to be on top of everything, and after my nerve blocks he reminds me that one of the office dr,s will be on call alll night. And the next day one of the nurses always calls me to check in with me and see how I am feeling. If anyone needs a doctor in central florida let me know.

Bye, kim
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