NeuroTalk Support Groups - Symptoms of Spread

Quote:

Originally Posted by AlishaE (Post 809407)

I was recently diagnosed with CRPS type I in my left leg. It was triggered by knee surgery last September (I knew something was really not right by October) and it spread to my entire left leg this summer.
My question is....
When it spreads to another limb does it just happen all of a sudden? Are there small pains that increase and then boom it's there? Or do you wake up one day and know that it's in another limb?
This is all very scary to me and I try not to think about it spreading more but it's hard not to sometimes.
Thanks! Alisha

I'm just like you and had the RSD plus accident that crushed the nerves start in my left leg. Damage went quickly all the way from the groin/mid calf to the foot within months. I then went 7 years with the damage remaining in my left leg only. Then it crossed hemispheres (correct term if you're looking for one) to my right and its done around 80% of the same damage I had in my left. The right leg has RSD only yet within 24 months nearly the same amount of damage occurred. Now the question is what kind of damage are you dealing with?

Are you dealing with just pain or are we talking about all the other goodies such as swelling, hot/cold, color changes that ranges from red to black as necrotic tissue you'd see if dealing with frostbite? Has it damaged your circulation system that then leads to blood clots, infections and then things even worse that you don't want to know about but that I've already experienced firsthand? Are you still able to bear weight on one or both of your legs or do you live in a wheelchair full time like I do?

These are the easiest ways I'd measure how fast and severe the RSD plus whatever else that got this horrible disease started. Of course RSD can spread but the odds of it are actually more rare than you think. Because people with more damage gravitate to forums such as this I've always thought that forums don't always give the average person an honest view of what RSD is since a higher average than norm is already in stage two or worse here than we'd see elsewhere.

You will learn how to live with the changes as they happen. It's never easy but you will adjust and you'll still have a life. It's going to be a different one, but it's still a life. As long as you do everything in your power to make sure you don't allow this insidious disease to overtake your entire life, you'll actually do just fine - well as fine as any gimp can that's got all sorts of implants and body parts missing.

Good days and bad are part of everyone's life. It's just ours have a few oddities that add some challenges that do wear us down a bit more at times. Best of luck.