Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 05-17-2007, 08:15 PM #11
nikmcjo nikmcjo is offline
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Join Date: Jan 2007
Posts: 116
15 yr Member
nikmcjo nikmcjo is offline
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Join Date: Jan 2007
Posts: 116
15 yr Member
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Hey. I was also dx with rsd at age 14 (im 15 now) so I know how your daughter feels. It almost seems as if you are describing me and how I felt after being diagnosed. I felt the same way when first got rsd in June of 2006 and was finally dx in September of the same year. I was always sad and I felt withdrawn from everyone because they didn't understand and I was just always frustrated that nobody could help and relieve any of the pain and also being a freshman in highschool, it was harder on me. I was on crutches for 7 months and in a wheelchair for 2 months before they actually started treating me. But if you want to give your daughter my email address:

nikkijo@sc.rr.com

I would be happy to email back and forth to her.

Anyways, I know how your daughter feels and I know how you feel as well. I know it is very hard for a parent to see their child go through this. It was hard for me to see my mom going through it.

For me, the things I found to help best was to try and make things seem as normal as possible. I am not one to accept change very well and I didn't like going from being normal to having everyone stare at me and treat me different and doing everything for me because I was an independent person. I was also a high level competitive gymnast before my injury leading to rsd so I pretty much lived in the gym. I thourouly enjoyed going to visit atleast once a week and I was able to do things w/o my foot (before spreading to all 4 limbs and back/head/neck area). But try taking her to see the horses atleast once a week even if she says she doesn't want to go. It will help greatly. And have her help with the grooming and brushing.

But some other things that helped me were finding an adult (not family or any really close family friends) and just talking with them. Before, I felt that just not saying anything about it to anybody was the best solution but then I started talking to my science and health teachers because they were very understanding and concerned and I never realized how much that helped. And now at my rehab place I am going to for therapy, I am in a daytreatment program with some of the nicest people you could ever meet. We all have different injuries (stroke, paralyzation, brain injuries, etc) and although we can't fully relate to how the pain feels, we all can relate to the different emotions we feel with it all (frustration, jelousy, sadness, etc).

But just have her talk with someone. She doesn't even have to bring up the rsd. Just talking to someone helps. Then after the conversations are just natural, the rsd and everything dealing with it will just come out.

I hope this helps out. Best of luck to you and your daughter.

Nikki
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