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 06-20-2007, 07:09 AM #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 Update From Me!

Hi Everyone!

yes, I know, I'm slack- I haven't posted here in ages! So I thought I'd update you on how things are.

For those that don't know me- hello! I'm 29, been with my hubby for 11 years, had rsd for 6.5 of those. I have four kids aged 9, 7, 5 and 1 (she turned one yesterday!) My rsd is in my right arm and right leg (including foot, shoulder, hand etc)

We moved interstate in January, back up north of Sydney where its warmer than Melbourne and I can actually leave the house most of the year, lol. I'm with a GREAT pain team at a hospital about 40mins away. I'm on the list for another ketamine infusion. My last one (3rd one) didn't work and my liver mucked up, but it could have been due to the fact I'd had a c/section only 8 weeks before and had heaps of complications, resulting in 7 weeks of double dose antibiotics and hospital visits. So its possible the ketamine on top of all that was just too much for my system. It's also possible that the ketamine just didn't work because thats how life can be sometimes! Either way, my Dr has agreed that its worth trying again and hoping for the best.

In the meantime, I was put on the Norspan Patch. I had a 10mg patch on for a week at a time. The pain relief is great, I'm able to be up with my kids and living almost normally. But the itchiness drove me insane! As soon as I'd rub it (didn't want to scratch it) it would start feeling itchy again. It was like that 24/7. I tried putting up with it. I tried taking phenergan to stop the itching. And I tried applying cortisone cream a few hours before putting the patch on, but neither really helped- they took the itching down to once every few minutes, but who can live like that? I'll be needing a padded cell if I keep going like that! lol I gave it six weeks, that's long enough to know its not right for me!

So I'm hoping the pain clinic can give me the medication in a different form- seeing as it was really helpful for pain relief and giving me my life back to a certain extent. I took my patch off two nights ago, so was in a bit of pain today, but I'm guessing the worst will hit tomorrow (as it takes three days to leave your system) and then I'll be watching a LOT of tv in bed!

My Pain clinic are really focused on multi-disciplinary techniques to help with rsd, and they're very up to date on all the latest findings etc, so I'm very lucky there.

The kids are all great, they are so different to each other, and growing up so quickly. Bailey was asking me what high school she'll go to- she's in grade four, will be in grade five after Christmas- slow down Bailey! I've attached a picture of Hannah, on her first birthday yesterday.

This year has been my worst yet with my health, and its been a very long, slow, depressing and frustrating year for me, but it seems like Hannah's first year has zoomed past! She says a few words now, has been walking since nine months, and is such a funny bunny! She'll grab my sock and run off with it, laughing. Then she'll stop and smile at me, then turn and run again, squeeling as she goes! She's a terror, but the best kind! And she makes all of this worth it!

x Kate
Attached Images
File Type: jpg standingloungehannah170607small.jpg (37.7 KB, 624 views)
__________________
RSD in right arm for 13 years, right leg for 8 years, left arm since May 2013, with full body symptoms and CNS.

Last edited by Cake; 06-20-2007 at 07:11 AM. Reason: Because I'm a Bad Typer!
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