Hi everyone,

I finished an inpatient pediatric pain program recently and have made big improvements. I am now able to endure outpatient physical therapy so I'm looking for a good place, preferably a place that knows how to rehab CRPS. I've been to NYU and it was terrible, I've tried some other smaller places as well. Does anyone have any suggestions or think they can help me search? I'd greatly appreciate it! Thanks

NYM

newyorkmets,

I just wanted to post that it is good to hear you are making such wonderful progress. That is great news. I do not know the New York area at all, so I do not have any suggestions for you. Keep on working through this. You are young and still have a very good chance a making a tremendous recovery.

CRPS in children isn't "as" complicated as in adults, though as severe, but it has more chance due to there still being growth hormone. I think back then Dr. Hooshmand told us that.

Anyway, I wish you plenty of time to recover, if you can recover, but you have to keep hope alive as long as there is hope!

Good luck!

Hi NYM!

Happy to hear about your big improvements. I am afraid that I am also unable to recommend any places in New York for outpatient PT since I am from PA. When I was initially diagnosed, I had no clue what I was dealing with, but I was fortunate to have a doctor who knew where to send me. Since that time, I have learned to question everyone and everything when it comes to CRPS. Six years later I needed PT for problems not related to CRPS ( age related), but I was not going to have anyone treat me who did not have some experience or knowledge about CRPS. It is just too easy to cause a flare-up or spread to a new area. I could not use the same therapist since she was a certified hand therapist and this was back related. I went to a new center with a written list of questions before I even began therapy. They were more than willing to address all of my concerns. Fortunately I found a good place on the first try.

I don't know why you felt NYU was terrible, but you can start your list of questions with those reasons. Your pediatric pain program specialists probably made specific recommendations. Make sure that any new place will follow those recommendations. You also know what has and has not worked for you, so let them know before you get into the program. In other words you just have to be an advocate for yourself before committing to one program. You sound like you have been advocating for yourself already and are an amazing young person. Good luck with this new challenge. My thoughts and prayers will be with you.

Shay

NYM, It is so great to hear that you making such good progress! I know you have worked hard on that and your grit, grace and determination have brought you this far.

Shay gave wonderful advice on finding an outpatient therapist that is a good fit for you. I would add that finding a pool for now and keeping up the aqua therapy when you can will help you stay active. For a long time I could only do mini walks and mini workouts on land but in the pool could go much longer.

You might also consider contacting a local chapter CRPS support group to see if they can reach out to members for recommendations near you.

Best of luck to you. I know you will keep at this and keep making progress. You came a long way with a brief inpatient stay, just think what the coming months will bring. When you get frustrated just remember it is gradual but you WILL get there.

Keeping you in my thoughts and prayers,

Just yesterday I tried something that might be helpful in the future for you, too, "pool running in place with a float vest," feet do not touch the bottom of the pool. For me this was a great addition to my pool walks and leg exercises.