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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

A newby to RSD

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Old 08-19-2012, 07:17 AM   #1
Join Date: Aug 2012
Location: Victoria, Australia
Posts: 1
Chelle2012 HB User
Smile A newby to RSD

Hi all! I'm not only new to RSD, I'm new to this site! So please bare with me while I fill you all in....

I have had 2 major spinal surgeries to fuse my spine, and after the first surgery noticed my left leg was becoming weaker, changing to a purple colour (sorry Australian spelling) on and off, muscle atrophy and my back/leg pain slowly increased. My surgeon first mentioned RSD then, but found I had a crack in the fusion so put me back in and did a posterior fusion.

6 months later I have gone back to him for review, and he is very disappointed to find out even thought the surgery was a roaring success, my pain is getting worse and is now starting to effect my right leg. All in all this started after the birth of my first child (now 7) with it progressing to surgery 2 years ago. He has now diagnosed me with RSD and has handed me off to a pain clinic which I cannot get into for 6 months! This is even harder to cope with as I haven't been able to speak with an expert on RSD and am having to find everything out for myself and try to figure out the best course of action to slow the progression and stay positive and active. My family don't understand so I can't talk about it much.

I am currently on Cymbalta, Endone, Oxycontin, Tramadol and Valium. Quite understandably the GP wants me off the morphine based drugs, but nothing is effective on the pain. I have noticed the worst time is at night when I get into bed, it becomes excrutiating! I have muscle spasm and back pain all the time, and at times have a hot stabbing pain in my back that runs down the back of either my right or left leg. During the day I try to cope and only have a slow release Tramadol in the morning. I hate drugs and have always been SUPER active so this is an incredible strain on my husband and children.

No-one locally knows much about the disease so I have researched it all and taken it apon myself to do 1/2 hour sessions of pilates to prevent further muscle weakness, and continue with rehab post surgical. I am having alot of trouble with both knees now which makes it hard to squat, but if I bend my back flares up....I am trying to stay positive, and between my volunteer work, working, studying a teaching degree, 3 children under 7, and my RE (Religious Education) teaching I am quite busy. Still I am finding it all overwhelming, and just to top it off I was a work out junkie after my kids and got back to 54kg's (119lbs, I'm 5' 8") but recently have put on 5kg's (11lbs) for no reason!!!

I guess it's hard cause I'm only 34 and feel like an 80 year old, and between the weight gain and adeoma I have been experiencing, I feel like a fat ugly pig too!

Thank you for listening....I hope to hear your experiences as it might shed more light on this condition for me.

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Old 08-19-2012, 08:35 AM   #2
Join Date: Apr 2011
Location: UK
Posts: 257
Kev629 HB UserKev629 HB UserKev629 HB UserKev629 HB UserKev629 HB UserKev629 HB UserKev629 HB UserKev629 HB UserKev629 HB UserKev629 HB UserKev629 HB User
Re: A newby to RSD

You have some good stuff going on in Australia but I am not allowed to post links.
Do a search for. Professor Michael Cousins Royal North Shore Hospital NSW and
Adapt Pain Management program.
Also Catalyst ABC Televison has a Video and transcript

Your best way to get your family to understand is to get them to come on here and read some of our stories. When they stop crying tell them this is what my life is now. Hell on Earth

Last edited by Kev629; 08-19-2012 at 08:37 AM.

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