Grateful for this support system
 

I just have to say, I'm so glad I found this forum. Even though I'm here for my son with CRPS, you've all been so much help. It's been a huge life changer for our whole family. I'm grateful for the support, information, and having people to help figure out confusing parts of this diagnosis. It helps to have people to talk to who "get it". Our family is supportive, but some have a hard time understanding why he can't just "tough it out" or "ignore the pain". I try to help them understand CRPS pain. It's important for his relationships with them, that they learn to understand it, at least to a degree. How do you help family members with this? Our family is close, and they mean well, but I've gotten everything from "He just has to take pain pills every two hours if he needs it" :eek: or "but it was just fractures" :Speechless: or "he's going to have this the rest of his life, and you both just need to learn to deal with it." :thud: It's almost comical, I suppose, but I've had to intervene for him more than once when someone was being particularly insensitive. They're trying, I think, and slowly learning. I'm just curious how others have handled this.

I think having a known nerve injury now ought to be a game changer and I would present it as such. It is not just his fractures, it was fractures then an extremely invasive surgery with a whole hardware store shoved inside and then a major nerve injured. CRPS is a painful overdrive syndrome thrown on for extra fun.

Nerve injuries are acknowledged to be devestatingly painful. When most people I talk to hear that I had a nerve torn in surgery they visibly cringe. Family may be more supportive when they learn that a nerve was injured and CRPS is a known nervous system response to injury. They also need to know that the nerve cannot recover if it is kept in a state of distress. There are chemical changes in function that result from nerve injury alone and also from CRPS. Being gentle with it allows an environment in which it may be able to settle and normalize. This may not be life long and taking pain pills every two hours just masks overdoing it, causing potential damage. Maybe as they achieve a better understanding of this, they will recognize that one has to be a super bad**s to get through this.

Hang tough Mom! Keep up the fight! :hug: