After searching forever to find an active forum for people who have RSD/CRPS, I didn't find one. :yfaint: However I did find a site that lists local support groups and one of the support groups has a Facebook group so I joined this morning. It's so active! I've had so much information just shoved in my face all day long.
It's helped me not only understand the disease better but more importantly has helped find new treatments and has helped me to accept that this is truly what he has. It's not another illness so I can stop trying to search for another cause. He does have Complex Regional Pain Syndrome and now I can put all of my focus on doing my best at helping him get better and more importantly feeling comfortable in his own home with the quality of care that I provide. As a caregiver sometimes you get annoyed, frustrated and impatient because you don't really understand. Now with a better understanding I can have a better attitude which will hopefully also help improve my husband's mood.
It's mainly for Californians and it is a closed group so they screen you before joining and none of your facebook friends can see your posts unless they are a member. If you live in the area and have a friend or family member with RSD/CRPS, this is a wonderful group and I highly recommend it: https://www.facebook.com/groups/RSD.CRPS.CA/ There are likely more groups in other areas and it's possible that they may be able to point you in the right direction if you don't live in California.
It's helped me not only understand the disease better but more importantly has helped find new treatments and has helped me to accept that this is truly what he has. It's not another illness so I can stop trying to search for another cause. He does have Complex Regional Pain Syndrome and now I can put all of my focus on doing my best at helping him get better and more importantly feeling comfortable in his own home with the quality of care that I provide. As a caregiver sometimes you get annoyed, frustrated and impatient because you don't really understand. Now with a better understanding I can have a better attitude which will hopefully also help improve my husband's mood.
It's mainly for Californians and it is a closed group so they screen you before joining and none of your facebook friends can see your posts unless they are a member. If you live in the area and have a friend or family member with RSD/CRPS, this is a wonderful group and I highly recommend it: https://www.facebook.com/groups/RSD.CRPS.CA/ There are likely more groups in other areas and it's possible that they may be able to point you in the right direction if you don't live in California.
