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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Irish,

I've had rsd for about 3 years now. It started in my left knee and now it's my whole leg. In the course of the 3 years it's gone from hip down. It doesn't always work that way and proper treatment and the time you have it is very important. I'm not sure what the health care is where you live and the abilities you have for your treatments and well being. Lumbar nerve blocks can be very helpful in making the rsd go into remission but most of the time it needs to be done within the first 6 months of pain or diagnose.
I've had 3 nerve blocks,unfortunately the damage was to much and didn't get diagnosed in time for them to help like the doctors would of wanted.
One of the main things to remember is staying positive. This disease can really bring the worst out of someone because of pain and you need a good support system who loves you and cares for you to see you through this. I do agree with innerharbor about having a diary for your pain. It can not just help you to find those "triggers" that cause extra pain but it can help your doctors understand the fluxes in your pain and movement too.
The more information the better. You can never research this to much,it's your well being and life. There are a number of great websites that you can go to.

The mayo clinic website can be very helpful too. They have a lot of good information on different treatments that can be done and the results people get from them. You can also go to google and in the top left part of the page is a "more" section. If you go to the scholar section and type in the disease name it only gives you research and studies from doctors all around the world,you can even refine your search to your area and the time lines too. Some of them require you to pay to see the studies so you may have to do some more research to get the ones that are just pdf files.
I hope i've been some help. This is a great place for help,advice and just someone to talk to that understands,truly understands your frustration,your worries,pain and how to cope with it all. Take care and stay warm. If you have any other questions please don't hesitate to ask,we're all in this fight together.
Deanne





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