There are 4 members of my family with CRPS. Three are on disability and one should be (me), but I still try to do what I can to earn a little money at my desk. I don't have a lot to add, as I have tried and tried many therapies and so far, can't say that anything specific helped me. Likewise, I take various medications, but can't say anything is working well for my CRPS. I am writing because of the family members I have with CRPS, three of us are still active (that doesn't look the same as active with non CRPS people, active for us is usually confined to our houses mostly). There is one who went to bed and never got up. He got huge in the belly and everything else shrunk to nothing (arms and legs). He is doing worse than the rest of us (I believe it's because he went to bed one day and never got up again). He grew bitter, then angry, then suicidal, and is a mess.

I do things around my house as much as I can, but I don't accomplish what others do in the course of a day. I have a small career, and do desk jobs mostly. This keeps my mind and body active enough to feel like I have a piece of life happening. 22 is really young and I am so sorry to hear this has started for her so early. Your commitment to her is amazing and I am grateful for you !!!

In the USA, doctors don't agree on how to treat CRPS. Even at the large teaching hospitals, their protocols are vastly different, with none being touted as "the cure or a great treatment" for CRPS. The doctor I have now is willing to try various things to attempt to help me, (he is an anesthesiologist), but so far, nothing sticks..... Ketamine is very expensive, with a course of therapy running around 12k. My doctor says, as do many teaching hospitals, that it's results aren't stable enough to say that it truly helps CRPS patients. Also, those treatments must be repeated, and 12k a pop is ultra expensive, so for me, we've decided against it at this time.

I am being told by my doctors that a body in motion stays in motion, so their goal for me is to continue to work for mobility and function, whatever that looks like for me. I am in an electric wheelchair, but I get up and down sometimes through the day and move as best I can in it so that I stay in motion. I hope there is some way to get your wife up and moving some, so that she can participate in life to any degree. Laying in bed works for a while, but I know my mind, and it wouldn't be long until my thoughts and perceptions got the best of me.