Hi TMullen,
My daughter is 16 years old and has RSD. I joined neurotalks for support myself. Although I do not have any idea of how much pain you feel, I do know what it is doing to your life. What I can tell you as a mom of a 16 year old girl with RSD, is that you have to take every day one day at a time. I hope that you have a supportive family, mom or dad that can help you through this.
My daughter went through Ketamine infusions in July, I believe they have helped, I know that she is going to have to have boosters in the near future. Do you have someone to talk to, meaning a professional, someone to help you cope.
I see that you went to the Childrens Hospital in Boston, my daughter went to the Cleveland Clinic Childrens Pain Rehab program. Yes, as she refers to it as a word I can not use here, but, she has a different outlook about the outcome. yes it was awful and painful, but it did teach her coping techniques, there has to be something that you learned there that you can still use to help you cope. Have you tried pool therapy, I know the only thing that Dr. Kirkpatrick feels that all RSD patients should only be doing warm pool therapy, as not to re-injure or to injure yourself again. Where do you live? Are you going to school?
I am so sorry that you are where you are right now. I know that there are a lot of things that parents really don't understand, like one day of feeling so good, hanging out with friends and within an hour of being home, you have so much pain and are so tired. I do want to tell you that there are several teen boards that you may want to also try. I hope Ali12 (Alison) will see your post. She is 14 years old and must be close to 15 by now...She is very versed and a wonderful young lady. I think that she can relate to you and what you are going through. Try to find her under members and PM her ( send her a private message, she is wonderful, I do have to say, she has given me a better understanding from a teenagers perspective.
Keep your chin up sweety, and know that you do have a place to come and vent. But, remember I am a parent of a child just like you, your parents are a great place to start too, they really do understand, and if they don't we really want to. So talk to them and let them know how you feel, they are there for you too.
As Loretta says "I am sending you soft hugs!" And a hope for a better today, with less pain.
Much love and hugs
,
Sandy
Quote:
Originally Posted by tmullen
just recently i found this website and i'm so happy! i've had rsd for six years. and i'm sixteen years old. i orignally hurt my right ankle january of 2002 with an orthopedic thinking i had hurt my achilles tendon he operated on it even though all mri's showed that my achilles was fine. prior to the surgery i was casted for ten months. which we all know makes the rsd even worse. after surgery my suregon was amazed at how much pain i was in, and said he'd never seen anybody in so much pain. i went to a orthopedic at children's in san diego with them pretty much telling me it was in my head, even though the did diagnosis me with cprs. they never told us anything about it. soon after that i couldn't even get out of my wheelchair, i tried sympathtic blocks which only made me senstivity worse. i've been on cymbalta, lyrica,naurontin, and amitriptalyne. i now only take amitriptalyne and a few tylenol pm's at night. i found a clinic opening at boston's childrens hospital last summer, which me and my family went to for a total of seven weeks. it was horrible! 8 hours a day five days a week. three hours of pt. and hour of ot. phycology. and group physc. it was worse then anything, i never thought my pain could get worse after being there. even though my pain increased they got me out of my wheelchair. now after being home for a year i'm worse then ever. my pains all over my both legs and up my back. the worst i've ever had. i'm just looking for a little pick me up. and any suggestions. i'm so happy i finally found a place where i can talk to people that know exactly how i feel. its hard to find that.
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