Just found this forum and, yes, I have RSD/CRPS. It sounds like you and I were diagnosed about the same time and you're correct...more awareness needs to be brought to the disorder/disease if only because this is such a debilitating disorder/disease. RSD not only affects the person who has it but, sadly to say, it affects the person's entire family and life situations.

My story...I was injured on my job near the end of 2007 and the doctor "mentioned" the possibility of me having RSD/CRPS at that time. In January of 2008, I had surgery to try to correct the physical issue of the injury (deranged knee) which, ultimately, caused the RSD to become severely worse. That's when they diagnosed it because I never recovered from surgery and the pain became 300 times worse after. Waited...and waited...and waited for most of 2008 for approval from IC to try a block and finally received it but, to mine and the doctor's dismay, it was unsuccessful, as well. And, made it worse (laid in the bed crying for a week). I should mention medications prescribed during this time were unsuccessful, as well. As I undertand it, all were unsuccessful because it quickly progressed and wasn't addressed as quickly as it should have been (insurance approval issues stood in the way). I finally received approval for a permanent Spinal Cord Stimulator (SCS) implant and had surgery three weeks ago.

I've been most fortunate as all of my doctor's have been understanding of this disease and very supportive of any and all my needs. They've tried everything possible they could and have been very upfront with us about the possibility of me never walking without the aid of a cane and having to continue with med's even with the SCS. And, I'm well aware that the SCS will not help the disfigurement, swelling, discoloration and possible continued spreading (already has spread to the other leg and one arm). But, it does help with the excrutiating Burning Pain. Personally, I'd rather have my doctor's tell me the truth than sugar-coat, try to get around the truth or even ignore my needs (as I found is done with others who have this horrible disorder/disease).

All this being said, I'm, presently, recuperating from surgery of the implant which will be a slow and long process (6-9 months). RSD/CRPS affects EVERY aspect of you and your family's life. I was a very active person before the injury. I walked 3 miles every day, worked a 60 hour a week job (and loved it), took care of my family's needs and now I'm the one needing to be taken care of on a continual basis. But, thankfully, I have a wonderful husband who knows exactly what I/we are going through and is the most supportive person in my life.

Goodness...I should just start a blog, huh? LOL!

Well...that's my story simplified for posting. But, those who suffer from it know, all too well, nothing is simple with it RSD/CRPS! Not only do you fight the disease/disorder on a moment-by-moment basis, but you have to fight for your right for treatment with the Insurance companies.

I have be in a horrible "flare" for the last three days! Such is the disease...

Kisses......
Callie45

Callie45,

There is a more than good chance that your spreading RSD symptoms and pain are caused
by an upregulation of NMDA associated central nervous system pathways in your body. What this means is that there is a more than good chance that you can halt, slow, or reverse the spread with
NMDA antagonist treatment. This has been published and documented in peer reviewed, scientific
literature for the last 10 years. Insist that all treatment options are available to you!

Better late than never, is my theme. Step back to August 4, 1987. I was hit by a van crossing the street on a motorcycle. I suffered 6 breaks to my entire left leg, a shattered knee, 2 of the breaks were compound fractures. I was impaled by the motorcycles footpeg, it went through the lower part of my calf. I'm also missing a sizeable chunk out of the inner part of my leg around the inner side of the left knee with a 14" scar in both directions up and down. My thigh muscle is completely atrophied, my knee is always swollen. My foot constsantly burn and my leg is always experiencing these electrical shock type of surges through out the leg. I'm also not to fond of the purplish hue of the leg. Also I have developed a spasm to my left arm that has the weird sort of build up and release sort of feeling to it that happens at least a 100 times a day. And because the right knee has compensated for and carried the extra burdens for the left one, it hurts too. So I've dealt with constant, unyielding pain, ever since then. In 2005 I actually tripped over where the carpet meets the tile on the floor, and re-broke my leg, giving myself a tibia plateau fracture. The surgeons grafted cadaver bone to my own and screwed three screws into my leg. 3 months later. They performed a debrievement on my knee, removed a torn chunk out of my Miniscus, in the knee. Did a lengthening to my Achilles Tendon to attempt to give me additional range of motion to my ankle and to allow my foot to sit flat on the floor (didn't work), and a release on my toes. Than in 2007 I fell at work and tore something in my knee and haven't worked since. My pain is unbareable. I have successfully managed to deal with consistant, unbarable, unyielding pain, for 20 years. I have been utterly annoyed at the fact that up until 2 weeks ago, I had never heard of RSD/CRPS. I was diagnosed with this disease 2 weeks ago, and I'm annoyed that there isn't a dedicated forum geared specifically towards sufferers of RSD/CRPS. I do know that you absolutely must have real insurance and not Medicare or your State's indegency programs to get a proper diagnosis. That's because you never see the same Doctor or rather Intern twice, and they all add to whatever file they have established for you and each one refers back to the previous doctor/intern notes to give them a base to grow from. It got annoying trying to explain to these cracker-jack doctors all my symptoms only to be treated as a pill popping junkie looking for a fix. It is strictly by chance that I applied for Disability, back in 2007 and my lawyer scheduled me for an IME and that Doctor was the one who put all the pieces together and came up with the diagnosis of RSD/CRPS. It's a relief, for me, to have a name to what is happening to me, but it is annoying that in order to really treat RSD effectively, it needs to be treated early on. So I have to deal with the fact that it's only going to get worse and it might be able to be contained to what it has turned into for me. It does spread, so hopefully the spread can be contained and maintained. But that's my story and I'm sticking to it.