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 08-09-2011, 10:20 PM #1
Cake Cake is offline
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Join Date: Sep 2006
Location: Australia
Posts: 148
15 yr Member
Cake Cake is offline
Member
 
Join Date: Sep 2006
Location: Australia
Posts: 148
15 yr Member
Default Long lost member needing new pain relief suggestions :-)

Hi Everyone!

Some of may remember me as i was a regular here a year or so ago, but i'll be a stranger to the rest of you, so first, a catch up on me:

I've had rsd in my right arm for almost 11 years and in my right leg for 5 years. I'm a mum of four kids but i lost my 9 year old daughter in a car accident last year. for the past year and a half, my rsd has been fairly well managed with ms contin, baclofen and endep, with 4hourly morphine liquid for flare ups. i've also had 5 ketamine infusions, with the last being in 2008 when i had a hysterectomy.

but everything changed last week when i sprained my right wrist. my rsd has gone to levels i've never had. its at a constant high with big pain attacks happening 2-4 times a day, that last for at least an hour, if not 2. they feel like the worst labour contraction pain, but with no ebbs or breaks at all. i squirm and yell and cry all the way thru.

my hand has completely turned in and is swollen to breaking point, like my skin is gonna rip in the middle, and i can't feel my fingers or thumb. my wrist has totally contracted and i have to walk with my arm out to my side with my hand higher than my elbow- almost "i'm a little teapot" style! i can't do anything for myself and my day revolves around pain attacks and medication times.

i went into hospital on friday cos i couldnt cope with it anymore, but all they could do was give me morphine every 4 hours, like i was doing at home. the pain team weren't going to be there until monday so i left on saturday nite to come home, as there was no point staying there. i did however get the dr to talk to my rsd specialist (who is also the director of pain management at that hospital), who said i can come see him on friday. he also got me started on gabapentin (aka neurontin), which i've been on in 2004 and 2007, with moderate but short-lived success.

because my rsd has been managed pretty well by my tablets since late 2009, before we lost our daughter livvy, i'm way out of the loop when it comes to knowing what new treatment options are out there for us. whether its a medication, an infusion, an IV medication or an implant etc, i'd like to know a bit about what the flavour of the week is, so that i can ask questions if my pain doc suggests anything.

also, to those of you that have had your wrist/hand contract like this, what has helped open it back up again?

my hubby has just started working full time, after being my carer for the past 8 years, and i'd hate for him to have to give that up as soon as he started. but i'm totally dependant on others right now (my mum has come up from melbourne for 2 weeks to be my carer) and my pain is the worst its ever been. we're also moving house this weekend, which is a hugely emotional event (because of losing our daughter last year) as well as a very physical one. my kids have gone thru enough already without this making life even harder for them. so i really hope we can turn things around asap.

sorry i've rambled on so much, i have a tendancy to do that!

basically, any suggestions you can give me on new pain relief options or what could help open up my wrist again, would be great. i'd like to know whats out there now that could be worth looking at.
xxxxxxx
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RSD in right arm for 13 years, right leg for 8 years, left arm since May 2013, with full body symptoms and CNS.
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